December 18, 2009. Alicia Hart and I will be doing a two hour talk on picky eaters and feeding aversion at the Effingham Public Library in Effingham, Illinois from 6pm to 8pm. Cost is $40.00 and this talk is open to therapists, parents, physicians or any professional interested in this challenging topic.
To register: 217-218-0716 or email Alicia at aliciahart@consolidated.net.
January 29 and 30, 2010 Laura and I will present with Marsha Dunn Klein (WOW!) on how to combine Food Chaining with her Get Permission approach. This is our best of both worlds talk and I am so excited to repeat it. I am even more excited that it will be in beautiful, warm, fun San Antonio right on the Riverwalk.
To Register: Something to look forward to! If you would like to join us, go to the www.cepauniversity.com website to register.
Be sure and check out Marsha's websites as well, Mealtime Connections and Mealtime Notions (see link on right side of the blog). Marsha will be lecturing and she is also hosting a lecture from Rona Alexander.
Thursday, November 26, 2009
Friday, November 20, 2009
Any therapists in Florida familiar with Food Chaining?
I need to refer a couple patients for treatment to a therapist who is willing to work with our team and has been to a Food Chaining course. Contact me at fraker.cheri@mhsil.com if you are interested.
Saturday, November 14, 2009
Treatment Guidelines for Children
TREATMENT -CHILD GUIDELINES
1. Emphasize learning to eat approach, don’t say “Just take a bite”…teach the child about the food, don’t push eating
2. Expand diet by offering foods that are similar to those the child tolerates, variety is key
3. Make meals low pressure, accentuate the positive
4. Fruit can be fruit smoothies, dried fruits, fruit bread, fruit flavored chips or even the inside of a PopTart at first
5. Vegetables can be introduced in veggie flavored chips, crackers, Veggie Stix, V-8 Splash, salsa, soup, pizza or spaghetti sauce
6. Do not allow grazing on food and liquid but be aware that some children with reflux like to graze and drink high volumes of liquid due to digestive tract discomfort
7. Scheduled meals and snacks are very important to developing internal desire to eat and not dampening appetite
8. Growth slows down the second year of life, make sure your portions are age appropriate and set at a tablespoon per age (For example: 2 year olds eat 2 T of fruit, 2 T of vegetable and 2 T of meat, 3 years old=3 T). A four year old will eat ½ of a sandwich or two chicken nuggets from a McDonald’s meal
Limit short order cooking, but offer at least one food the child likes on the plate
9. Use caloric supplements wisely, work with a pediatric dietitian
1o. Monitor for signs of problems such as food allergy, Eosinophilic Esophagitis, constipation, silent reflux and swallowing problems-dysphagia is often missed!!!
10. Positioning is a key factor, First Year’s Space Saver Seat, Peg Perego high chair, Stokke Tripp Trapp Chair, One Step Ahead Chair are some of our favorites
11. Refer to occupational therapy for sensory treatment, this is key to improvement
12. Work as a team/network if you don’t have access to a team
1. Emphasize learning to eat approach, don’t say “Just take a bite”…teach the child about the food, don’t push eating
2. Expand diet by offering foods that are similar to those the child tolerates, variety is key
3. Make meals low pressure, accentuate the positive
4. Fruit can be fruit smoothies, dried fruits, fruit bread, fruit flavored chips or even the inside of a PopTart at first
5. Vegetables can be introduced in veggie flavored chips, crackers, Veggie Stix, V-8 Splash, salsa, soup, pizza or spaghetti sauce
6. Do not allow grazing on food and liquid but be aware that some children with reflux like to graze and drink high volumes of liquid due to digestive tract discomfort
7. Scheduled meals and snacks are very important to developing internal desire to eat and not dampening appetite
8. Growth slows down the second year of life, make sure your portions are age appropriate and set at a tablespoon per age (For example: 2 year olds eat 2 T of fruit, 2 T of vegetable and 2 T of meat, 3 years old=3 T). A four year old will eat ½ of a sandwich or two chicken nuggets from a McDonald’s meal
Limit short order cooking, but offer at least one food the child likes on the plate
9. Use caloric supplements wisely, work with a pediatric dietitian
1o. Monitor for signs of problems such as food allergy, Eosinophilic Esophagitis, constipation, silent reflux and swallowing problems-dysphagia is often missed!!!
10. Positioning is a key factor, First Year’s Space Saver Seat, Peg Perego high chair, Stokke Tripp Trapp Chair, One Step Ahead Chair are some of our favorites
11. Refer to occupational therapy for sensory treatment, this is key to improvement
12. Work as a team/network if you don’t have access to a team
Friday, November 13, 2009
Feeding Course with Marsha Dunn Klein in San Antonio in January 2010
We are presenting "The Best of Both Worlds: Food Chaining and the Get Permission Approach"with the wonderful Marsha Dunn Klein on January 29 and 30, 2010 in beautiful San Antonio, Texas. Hope to see you there. If you would like to attend, you may register at www.cepauniversity.com.
Friday, October 16, 2009
Treatment Tips: Summary of Intervention for the First Year of Life
Treatment Summary for the First Year of Life by Cheri Fraker
Treatment during the first year of life should focus on establishing coordination of the SSB sequence. It is very important to use the right feeding products that meet the child's needs. Here are some suggestions:
1. Pick the right products to work on coordination of the key skill of suck/swallow/breathe sequence
2. Products like a standard bottle with the Gerber silicone medium flow nipple, Dr Brown bottle using the level 1 slow or level 2 medium flow nipple may be good choices.
3. Thicken liquids only if needed. Good products for thickened liquids are the Dr. Brown level III, IV or y-cut nipple and the Gerber silicone fast flow nipple.
4. Use external pacing techniques as needed.
5. Use cervical auscultation of the swallow to monitor the quality of the swallow and gather information to determine which product has the best flow rate to meet the child’s needs.
6. Stay on track as much as possible with a Pre-Chaining program.
7. Pick a spoon that meets the child’s needs. The child may benefit from use of the Maroon spoon or a Sassy soft bowl spoon. When introducing spoon, rest the spoon on lower lip and allow the upper lip to clean the bolus off the spoon. Spoon feeding technique is very important.
8. The DuoSpoon is a great product to work on chewing skills. This product also works on desensitization of the gag reflex and increases intra-oral awareness. A Nuk brush can also be used as a spoon to encourage chewing and provide another textured utensil.
9. Dip the Nuk or DuoSpoon in strong flavor purees or smooth table foods to advance tolerance of taste but not overwhelm with texture. The child can experience the texture of the utensil while still only having to swallow a smooth texture.
10. Encourage independence with “double spooning”…child has a spoon and parent/therapist has a spoon.
11. Cups-The Nuby cups, Klean Kanteen cup, Playschool cups (reversible valves) are good products. For straw cups, the child may do well on the Munchkin straw cup or Playtex straw cup are good products. A small straw as a pipette can be used to work on skills. We teach the kids to “kiss it goodbye” using good lip seal.
12. Don’t miss those “windows of opportunity” to introduce foods in a progression. 13. Don’t stay on baby food past first year of life.
14. Do a swallow study if you have concerns about safety of intake
15. Remember how growth, changes in the oral cavity impact feeding. Babies may struggle at 4-6 months when the tongue drops down in the mouth and again around 11-12 months of age.
16. A referral to ENT may be needed if there are any concerns about the upper airway.
17. Continue to monitor your patients for signs for constipation, reflux and allergy (rash, eczema).
18. Refer to dietitian/peds GI if you feel the baby presents with signs of allergy or digestive tract disorder.
Treatment during the first year of life should focus on establishing coordination of the SSB sequence. It is very important to use the right feeding products that meet the child's needs. Here are some suggestions:
1. Pick the right products to work on coordination of the key skill of suck/swallow/breathe sequence
2. Products like a standard bottle with the Gerber silicone medium flow nipple, Dr Brown bottle using the level 1 slow or level 2 medium flow nipple may be good choices.
3. Thicken liquids only if needed. Good products for thickened liquids are the Dr. Brown level III, IV or y-cut nipple and the Gerber silicone fast flow nipple.
4. Use external pacing techniques as needed.
5. Use cervical auscultation of the swallow to monitor the quality of the swallow and gather information to determine which product has the best flow rate to meet the child’s needs.
6. Stay on track as much as possible with a Pre-Chaining program.
7. Pick a spoon that meets the child’s needs. The child may benefit from use of the Maroon spoon or a Sassy soft bowl spoon. When introducing spoon, rest the spoon on lower lip and allow the upper lip to clean the bolus off the spoon. Spoon feeding technique is very important.
8. The DuoSpoon is a great product to work on chewing skills. This product also works on desensitization of the gag reflex and increases intra-oral awareness. A Nuk brush can also be used as a spoon to encourage chewing and provide another textured utensil.
9. Dip the Nuk or DuoSpoon in strong flavor purees or smooth table foods to advance tolerance of taste but not overwhelm with texture. The child can experience the texture of the utensil while still only having to swallow a smooth texture.
10. Encourage independence with “double spooning”…child has a spoon and parent/therapist has a spoon.
11. Cups-The Nuby cups, Klean Kanteen cup, Playschool cups (reversible valves) are good products. For straw cups, the child may do well on the Munchkin straw cup or Playtex straw cup are good products. A small straw as a pipette can be used to work on skills. We teach the kids to “kiss it goodbye” using good lip seal.
12. Don’t miss those “windows of opportunity” to introduce foods in a progression. 13. Don’t stay on baby food past first year of life.
14. Do a swallow study if you have concerns about safety of intake
15. Remember how growth, changes in the oral cavity impact feeding. Babies may struggle at 4-6 months when the tongue drops down in the mouth and again around 11-12 months of age.
16. A referral to ENT may be needed if there are any concerns about the upper airway.
17. Continue to monitor your patients for signs for constipation, reflux and allergy (rash, eczema).
18. Refer to dietitian/peds GI if you feel the baby presents with signs of allergy or digestive tract disorder.
Tuesday, October 13, 2009
Plain, white divided plates for food chaining
The Feeding Team advocates use of the divided plates for our kids as we utilize the "food chaining" approach. Typically, these plates are seen in the marketplace as character-themed plates with cartoon and television icons our children are familiar with. My child, however, hit a developmental point and maturity level where he rejected dishes, or any other items that featured characters targeted at toddlers and preschoolers. Although his autism is severe, he did seem to grow out of being impressed by them.
That is why I was thrilled to discover that Corningware makes a plain, white, divided plate. They come in a small and large size. I purchased them inexpensively at the Corning/Revere Store in the Tuscola Outlet Mall. They are practically indestructible, which comes in handy when food therapy becomes a frisbee game; not that that's ever happened to me... Plain white dishes that are always the same meet with Joey's approval. The rest of my dishes are also Winter White Corningware, so now that he is taking spinach and other greens readily out of a bowl, his "eating vessels" all have the same basic look. I believe it helps him to have some variables the same. Blessings, Ellen
That is why I was thrilled to discover that Corningware makes a plain, white, divided plate. They come in a small and large size. I purchased them inexpensively at the Corning/Revere Store in the Tuscola Outlet Mall. They are practically indestructible, which comes in handy when food therapy becomes a frisbee game; not that that's ever happened to me... Plain white dishes that are always the same meet with Joey's approval. The rest of my dishes are also Winter White Corningware, so now that he is taking spinach and other greens readily out of a bowl, his "eating vessels" all have the same basic look. I believe it helps him to have some variables the same. Blessings, Ellen
Monday, October 5, 2009
iPhone and iPod Touch
Hey, have you checked out the communication possibilities and special applications available on these products for kids and adults with vision, hearing and/or motor/communication challenges? Very interesting! What possibilities! Love it!!!
Check out link on the side column.
Wave of the future?
Check out link on the side column.
Wave of the future?
Wednesday, September 30, 2009
Dallas! October 16 and 17
We would love to see you in Dallas, Texas as we teach the "What to Do and How When and Why to Do It" course. I love this course, it is all about clinical decision making and judgment. If you are interested, go to www.cepauniversity.com/.
Monday, September 28, 2009
Thank you, Nashville and Dallas, TX here we come!
We had the best time in Nashville. Thank you to Lori Scott and her team at Vanderbilt. What a beautiful facility! We also tried fried pickles and jalepeno cornbread for the first time!
Now, we are gearing up for the trip to Minnesota to speak at the Neonatal Nutrition Course and then off to Dallas October 16 and 17th for the "What To Do and How, When and Why to Do It" course.
Now, we are gearing up for the trip to Minnesota to speak at the Neonatal Nutrition Course and then off to Dallas October 16 and 17th for the "What To Do and How, When and Why to Do It" course.
Sunday, September 20, 2009
Nashville, TN Food Chaining Course Sept 25 and 26th
There are still seats available for our Food Chaining course in Nashville at Vanderbilt Medical Center. If you are interested call Art Moreau at Continuing Education Programs of America at 309-472-1292. We would love to see you there.
Thursday, September 17, 2009
Family Care for Children with Special Challenges
The more I work closely with children and their families, the more I am aware of the lessons learned when your child has a medical, physical or emotional challenge of some kind. I know for me, as the mother of a child with cyclic vomiting syndrome and as a health care professional, I often reflect on this journey.
We have been on our journey for 16 years. My emotions are always just under the surface. When touched, tears flow and that is ok, because tears dry. But the emotions run deep.
I am the mother of one child, not by choice, by circumstance. Physical for me as well as really having no choice. I don't know if I could have cared for another child when we were in the deep ocean of six years of "CVS-BD" (before diagnosis). Luke is on the most severe spectrum of CVS. Two days of literally sitting in a chair and watching him vomit over and over. Moving only to go empty the basin and return. Nothing happened but taking care of him. Life came to a standstill in our house. It was terrifying and frustrating. It changed the course of our lives, and because of those changes, our plans for a bigger family changed. I will tell you that I felt like a failure, as a mother, as a wife and as a woman. If I was stronger, I could have done it all. No matter that I had chronic pain from six discs impacted by an injury from a patient and later a car wreck, benign positional vertigo and I was on heart medication for tachycardia. I was in the throws of depression and did not even know it. Luke was hospitalized every six to twelve weeks. Dehydration and vomiting up blood became a normal thing in our home. Financially we were hit with over 50,000 dollars in our part of medical bills. There were other health issues for other members of our extended family. It was a rough time but I still felt like a failure. I couldn't hold the new, healthy babies my co-workers were having and I braced myself every time someone would say, "Oh, you only have one child?"or call me an "amateur mom."
Only...
Over the six years until Luke was diagnosed, I became quite the protective mother. I wonder how many notes are the medical record about "Luke Fraker's Mommy". I gave health professionals about 5 minutes to show me they knew what they were doing. Sometimes we were treated with total compassion and other times with total disrespect. This does not help patients. They need to be heard. I became a force to be reckoned with not because I wanted to be that way, but because I HAD to be that way. We searched and found a team of medical professionals who knew how to take care of Luke. That is what I try to provide now for my patients in feeding team clinic. I tell families I will help them, but they also have to keep in close contact so I know what is going on and how to continue to help them. As for Luke's doctors and occupational therapist, I trust them and have developed a very close, life long bond with those people. I was very active in his care. After Luke was diagnosed, it was a tremendous relief, but I still had to be on guard all the time in any ER or when someone other than my doctor was on call or we were out of town.
It is also hard to be a wife, daughter and friend when you are being a mother bear. Sometimes you look in the mirror and don't recognize who you see.
So I will share with you that Luke's CVS is tied to my deeper emotions about being a mother. When something hits that vein of emotion inside of me, it can overwhelm me for a while. We as parents feel many different emotions and have to find an outlet of some kind. For me, I needed something. That was building a feeding team. I poured that energy into my work with infants and children. There, I could hold a baby in the NICU at work or in clinic and I could take care of that child in need. I could soothe parents who were hurting like I was and through that, I started to feel whole again. I started to teach and lecture and write to inform others about CVS and help kids be diagnosed and cared for. Just the other day, I received a letter from a young wife about her husband. It sounds like he has CVS and he was never diagnosed. What Luke endured had purpose.
After re-injuring my neck and back, I was sent to pain counselor by my PT. She and I talked about my injuries and the conversation got around to family, which led to talk about my journey with Luke as well as living with pain. She told me that I needed to forgive myself that Luke does not have brothers or sisters. That Randy and I did not have the dream of another son or daughter. She helped me try to come to terms with the memory of Randy smiling across a room at me so many times after we were first married and holding up two fingers to tell me that he wanted two little girls just like me. Yes, tears come, even now, but they will dry and I will learn and move on. She asked me what my pain looked like. It took a while to answer that. I told her it was black. She asked me to keep thinking about it. I told her it was a drain. She asked me if I could see anything else in that blackness. I told her I could see baby clothes. After a long time of just sitting there together in silence, she told me that Randy and I made the best decision we could for the family we had and the situation we were in. She told me that there would be lessons learned from this walk that it would serve a purpose for me, for Randy, for Luke as well as for others. She was right. This blog is part of that. My hope is that it helps someone else.
So through all of this, I am very aware of families. As for my family, we have our Luke. Other families are large and parents must divide themselves between the needs of many. Some are single parents or grandparents caring for their grandchild 24/7. I salute them all. I admire and respect them. I listen when they tell me they feel that they are short-changing one child for the needs of the others or tell me the long list of challenges they face every day. I literally cannot imagine what that is like. As for siblings,I tell parents that over the years I have seen these kids, through caring for their brother or sister with special needs, grow up to become amazing, kind and generous adults. I have seen some become therapists themselves. It is not easy, it is not all good all the time, but I have been so moved over and over watching families grow together.
Try to include family care in your treatment. Watch what you say and how you ask questions, do it in a way that does not wound a parent. Let them tell you their child's story. If you listen long enough, they can tell you what is wrong and what their child needs. Don't overwhelm a family with a long list of tasks after therapy. Work activities into daily life. Treat in the real world. Be realistic and don't be a burden to the family you are treating. I give the siblings special activities that they, and only they, can do for their brother or sister but only if they are ready. I help other families find respite care or help from other sources so they can have those special moments of one on one time with each child in their family. Or I may work with the child and give the rest of the family books to share or a game to play together during our session while I am taking care of my patient. Maybe the rest of the family goes to our quiet area and talk or have a snack during therapy time or mom just looks through a magazine one day while we have the session.
I love this photo of Joel, Noah and Alex when he was in the NICU. It tells such a story. So much fear and uncertainty at first. I see photos of the boys now, holding Alex, hugging him, playing on the floor with him and it warms my heart. I so recommend that any of you reading this, read Alex's Blog, A New Kind of Normal. Jessica opens her heart and shares her story, her highs, her lows and knowing her has made me a better therapist and a better person. Alicia's website, The Autism Life.com is another wonderful resource. Stephanie and Jase are just wonderful and I love their comments and additions to this blog. Jase has cyclic vomiting syndrome too and Steph has been a comfort to me.
We all need to take care of each other. Take time to listen, take time to show compassion, give of yourself and by doing so, you fill yourself up in giving. Those moments, those kind words, encouragement and support may mean more than you will ever know. Give parents a place to feel safe to talk to you and share their struggles. Listen. Don't feel that you have to talk or fix what is wrong, simply listen. You will be a better person, a better therapist and your work will truly matter.
We have been on our journey for 16 years. My emotions are always just under the surface. When touched, tears flow and that is ok, because tears dry. But the emotions run deep.
I am the mother of one child, not by choice, by circumstance. Physical for me as well as really having no choice. I don't know if I could have cared for another child when we were in the deep ocean of six years of "CVS-BD" (before diagnosis). Luke is on the most severe spectrum of CVS. Two days of literally sitting in a chair and watching him vomit over and over. Moving only to go empty the basin and return. Nothing happened but taking care of him. Life came to a standstill in our house. It was terrifying and frustrating. It changed the course of our lives, and because of those changes, our plans for a bigger family changed. I will tell you that I felt like a failure, as a mother, as a wife and as a woman. If I was stronger, I could have done it all. No matter that I had chronic pain from six discs impacted by an injury from a patient and later a car wreck, benign positional vertigo and I was on heart medication for tachycardia. I was in the throws of depression and did not even know it. Luke was hospitalized every six to twelve weeks. Dehydration and vomiting up blood became a normal thing in our home. Financially we were hit with over 50,000 dollars in our part of medical bills. There were other health issues for other members of our extended family. It was a rough time but I still felt like a failure. I couldn't hold the new, healthy babies my co-workers were having and I braced myself every time someone would say, "Oh, you only have one child?"or call me an "amateur mom."
Only...
Over the six years until Luke was diagnosed, I became quite the protective mother. I wonder how many notes are the medical record about "Luke Fraker's Mommy". I gave health professionals about 5 minutes to show me they knew what they were doing. Sometimes we were treated with total compassion and other times with total disrespect. This does not help patients. They need to be heard. I became a force to be reckoned with not because I wanted to be that way, but because I HAD to be that way. We searched and found a team of medical professionals who knew how to take care of Luke. That is what I try to provide now for my patients in feeding team clinic. I tell families I will help them, but they also have to keep in close contact so I know what is going on and how to continue to help them. As for Luke's doctors and occupational therapist, I trust them and have developed a very close, life long bond with those people. I was very active in his care. After Luke was diagnosed, it was a tremendous relief, but I still had to be on guard all the time in any ER or when someone other than my doctor was on call or we were out of town.
It is also hard to be a wife, daughter and friend when you are being a mother bear. Sometimes you look in the mirror and don't recognize who you see.
So I will share with you that Luke's CVS is tied to my deeper emotions about being a mother. When something hits that vein of emotion inside of me, it can overwhelm me for a while. We as parents feel many different emotions and have to find an outlet of some kind. For me, I needed something. That was building a feeding team. I poured that energy into my work with infants and children. There, I could hold a baby in the NICU at work or in clinic and I could take care of that child in need. I could soothe parents who were hurting like I was and through that, I started to feel whole again. I started to teach and lecture and write to inform others about CVS and help kids be diagnosed and cared for. Just the other day, I received a letter from a young wife about her husband. It sounds like he has CVS and he was never diagnosed. What Luke endured had purpose.
After re-injuring my neck and back, I was sent to pain counselor by my PT. She and I talked about my injuries and the conversation got around to family, which led to talk about my journey with Luke as well as living with pain. She told me that I needed to forgive myself that Luke does not have brothers or sisters. That Randy and I did not have the dream of another son or daughter. She helped me try to come to terms with the memory of Randy smiling across a room at me so many times after we were first married and holding up two fingers to tell me that he wanted two little girls just like me. Yes, tears come, even now, but they will dry and I will learn and move on. She asked me what my pain looked like. It took a while to answer that. I told her it was black. She asked me to keep thinking about it. I told her it was a drain. She asked me if I could see anything else in that blackness. I told her I could see baby clothes. After a long time of just sitting there together in silence, she told me that Randy and I made the best decision we could for the family we had and the situation we were in. She told me that there would be lessons learned from this walk that it would serve a purpose for me, for Randy, for Luke as well as for others. She was right. This blog is part of that. My hope is that it helps someone else.
So through all of this, I am very aware of families. As for my family, we have our Luke. Other families are large and parents must divide themselves between the needs of many. Some are single parents or grandparents caring for their grandchild 24/7. I salute them all. I admire and respect them. I listen when they tell me they feel that they are short-changing one child for the needs of the others or tell me the long list of challenges they face every day. I literally cannot imagine what that is like. As for siblings,I tell parents that over the years I have seen these kids, through caring for their brother or sister with special needs, grow up to become amazing, kind and generous adults. I have seen some become therapists themselves. It is not easy, it is not all good all the time, but I have been so moved over and over watching families grow together.
Try to include family care in your treatment. Watch what you say and how you ask questions, do it in a way that does not wound a parent. Let them tell you their child's story. If you listen long enough, they can tell you what is wrong and what their child needs. Don't overwhelm a family with a long list of tasks after therapy. Work activities into daily life. Treat in the real world. Be realistic and don't be a burden to the family you are treating. I give the siblings special activities that they, and only they, can do for their brother or sister but only if they are ready. I help other families find respite care or help from other sources so they can have those special moments of one on one time with each child in their family. Or I may work with the child and give the rest of the family books to share or a game to play together during our session while I am taking care of my patient. Maybe the rest of the family goes to our quiet area and talk or have a snack during therapy time or mom just looks through a magazine one day while we have the session.
I love this photo of Joel, Noah and Alex when he was in the NICU. It tells such a story. So much fear and uncertainty at first. I see photos of the boys now, holding Alex, hugging him, playing on the floor with him and it warms my heart. I so recommend that any of you reading this, read Alex's Blog, A New Kind of Normal. Jessica opens her heart and shares her story, her highs, her lows and knowing her has made me a better therapist and a better person. Alicia's website, The Autism Life.com is another wonderful resource. Stephanie and Jase are just wonderful and I love their comments and additions to this blog. Jase has cyclic vomiting syndrome too and Steph has been a comfort to me.
We all need to take care of each other. Take time to listen, take time to show compassion, give of yourself and by doing so, you fill yourself up in giving. Those moments, those kind words, encouragement and support may mean more than you will ever know. Give parents a place to feel safe to talk to you and share their struggles. Listen. Don't feel that you have to talk or fix what is wrong, simply listen. You will be a better person, a better therapist and your work will truly matter.
Friday, August 28, 2009
Vaccines and Autism, Much to Consider, What is Your Viewpoint
Contributed by Ellen
ELLEN: This is in regard to vaccines, which, by the way, will be featured on the upcoming show on Dateline this Sunday. Yesterday, I was sent a post by a woman (Ms.M) who sought to encourage parents to "educate before they vaccinate". It was an attempt to discourage parents from following the current vaccine schedule for their children. The response I wish to share to this is below. It was written by a friend and parent of a child with autism. This parent has been a great help to me with my son and his numerous issues. She has read and studied the subject more than I, and lives daily with autism. She also teaches on autistic spectrum disorders. She has fought fearlessly for her son and helped numerous other parents of autistics in their struggle. She gave me permission to post her comments here. (See below under vaccinate)
NOTE FROM CHERI: Ms. M's post did not go into the serious health risks from not vaccinating children nor did it go into detail about research and how true evidence based research is conducted in this country, both good and bad. These are references listed below from Ms. M to be fair. I will tell you as a therapist who has worked in this field for 22 years, that I do not agree that vaccines are the cause of autistic spectrum disorder. I believe, like many who have studied this subject, that there is a cascade of variable events (not the same for everyone) that have led to an incredible increase in the number of children with autism. It is also true that we still do not know what autism is. I do not believe in simple answers to a complex problem. I feel that we need to keep our eyes open and keep looking. Sometimes you cannot see the forest for the trees. When I graduated from college, I was given a handout on autism and told that maybe I would work with a few children who had autism. That was in 1986. Do we need answers? Yes, the right answers. What I do believe and know to be true is that there is a health crisis coming in this country, unlike anything we have ever seen. Swine flu will be nothing compared to what may happen, if children are not vaccinated from deadly diseases with the ability to rapidly mutate to pandemic levels. This is a health issue that impacts us all.
-------------------------------------------------------------------------------------
VIEWPOINT 1 DO NOT VACCINATE:
Resources from Ms. M post:
www.marytocco.com
http://www.thinktwice.com
http://www.consumerhealth.org
Vaccines: Are They Really Safe & Effective?
by Neil Miller
What Every Parent Should Know About Childhood Immunization
by Jamie Murphy
The Vaccine Guide: Risks and Benefits for Children and Adults
by Randall Neustaedter
-----------------------------------------------------------------------------------
VIEWPOINT 2-VACCINATE:
"Ellen,
I want you to know that I'm right there with you on this. When I was in the history department (yep the history dept) most of my research was in the history of science and medicine / disease. One of my graduate papers was on polio epidemics in the United States and I learned two things through that experience: vaccines work very very well and there's still much of the fear-mongering puritanical pursuit of witches in the US--they've just chosen to move from the female witch persona to the invisible hand of death. While I didn't see first-hand, reading the accounts of the epidemic from parents and families put a healthy respect for vaccines in my mind and in my soul. Parents today have NO idea what a real epidemic is like. Many have no idea what it is like to lose a child, a young child to polio, typhus, or any other awful disease process. They have NO idea just how powerful the public health department becomes in a time of epidemic. I'll never forget accounts of the polio epidemics where affected children were removed from the homes and the parents clutching arms and taken to a hospital where they died, alone. Parents never had the ability to get closure, to see the body through a funeral--he or she just never came back. Parents forget about these things, or never knew about them to begin with. It saddens me that we have come so far in this respect, only to go right back.
The funny thing about this 'article' is that she constantly pushes the term 'research' and that parents should do their own research before vaccinating. I venture to guess her research is predicated upon Wakefield's flawed assumptions and poorly designed study that has sent parents running in droves away from the MMR due to the autism fears. So my question is this: does Ms. M know that Wakefield's research has been disproven time and time and time and time and time again? Does she know that his study cannot be replicated using his methodology and getting the same result? Does she know that he contaminated samples (whether knowingly or unknowingly, the effect is still contamination) in the study, thereby invalidating any result? Does she know that every study done since then has never seen a connection between autism and MMR? Does she know that thimerasol has been removed from vaccines in other countries long before the US did and their rates of ASD continue on the same trajectory as before? It changed nothing. Nothing.
People like Ms. M do not truly understand immunology. She has a popular science grasp on the concept and does not get how 'research' really works. I venture to guess she has not read much about immunology. I venture to guess she has not read much about virus mutation and how those who are unvaccinated are spreading a more virulent, mutated form of some of these diseases--look to the Carribbean to see how a brother was vaccinated against polio, sister wasn't and she became infected with polio where it then mutated and devastated the entire community. I venture to guess Ms. M doesn't fully understand that someone does a study and then someone tries to replicate it and get the same results. Then after so many such studies, we are looking at something that really takes hold and changes our belief in a process or issue. For Ms. M, one study on vaccines and autism was enough apparently.
My other thought is just exactly what kind of research is Ms. M reading? There's the kind that gets published in a journal that is peer reviewed by people who are independent and impartial and then there are journals that we created by an organization to 'push' their own research and agenda that is not peer-reviewed and if it is reviewed at all, it's reviewed by a bunch of like minded yes men who do not look at the study objectively--they don't look for flawed methodology, flawed assumptions, flawed data collection or analysis, or a series of poor references.
For me, and for those I continue to advocate for--this is a non-issue. A complete non-issue. They waste their time on a dead end street in the quest for knowledge about autism. They bang their head on an issue that will have no affect on the outcome of a autistic child's life. They spend all their time and energy yelling from the top of their lungs, 'vaccines, vaccines' and yet they do nothing about to push the quality of life for those with autism. They do nothing to push research in ways to help them communicate, learn, be social, or understand sensory aspects. They do nothing to help those with autism be more accepted by the community at large--they community now fears or pities the child because of this whipped up frenzy about vaccines and toxicity. They do nothing to help the self-esteem of a child with autism--to know that he or she is truly a gift and that we have far more to learn about him or her then they will ever learn from us.
I love her sentence about Jenny McCarthy and the fact that her son is autistic. It's ironic because Jenny McCarthy is for greening vaccines and not getting rid of them altogether. It's ironic because Jenny McCarthy believes that a gluten free diet has cured her child. There are many who say her child is clearly still autistic. Scare mongering is scare mongering. It does nothing, nothing at all constructive. Ms. M offers no other 'research' in her article that allows her readers to come to their own conclusion--she merely scares them into believing her belief. Well I for one don't believe her and what she predicates her knowledge on. So when she encourages her readers to do some research, I agree wholeheartedly. But one must understand that all research is not created equally, all studies are not created equally, and all conclusions reached from data are not created equally. So I would encourage her readers to not accept everything as fact before doing some reading of their own--including reading things that they might not always agree with. I read books from the 'biomedical' groups just as much as I try to read from the others. Too often, such extremists will not read anything but from those that agree with them--I can assure you this is not the way to go about forming an opinion, or at least not an educated one. My advice to Ms. M's readers: read them all, listen to all sides, learn for yourself and make your own opinion.
Those out there who blame parents for 'giving their child autism' because they chose to vaccinate have incredibly poor taste. Again, we have gone so far only to go right back. This is no different the 'refrigerator mother' hypothesis that we have fought to free these children and their parents from. Blame, it's a difficult cycle of grief to claw out of. For those that seek blatantly blame a mother for her child's autism can only be described as an insensitive wretch. It's not productive, it doesn't change that child's outcome in life. They make the sign of the witch as they walk by and pass judgment where judgment should not come. They pass judgment but forego compassion.
It wears on my soul that we come so far but step so far back. It wears on my soul that we have the power to be compassionate but are not. It wears on my soul that we have the power to see but do not.
Feel free to post this--someone should...
---------------------------------------------------------------------------------
MORE FROM ELLEN: I most strenuously disagree with the current trend towards not vaccinating children. As many of you know, I was employed as a nurse and staff educator at LaRabida Children's Hospital for a number of years before choosing to raise my family as a stay-at-home mother. I also have a Master's Degree in Science from DePaul University. LaRabida is located on the South side of Chicago.
Three years there were spent working in outpatient clinic. Part of my job was to administer vaccines. I gave between 10 and 100 a day, depending on the clinic. I cannot recall even one serious reaction to any vaccine that was administered there. Not one. I do, however, recall the very serious measles outbreak that occurred in the early 1990's. Over 500 children died of the measles in Chicago alone, and it was serious enough that we began giving measles vaccines to younger children. We were all incredibly relieved when the varicella vaccine became available. As I am sitting here, I am tearing up as I recall several beloved patients who died from the chicken pox.
My grandmother and mother feared polio during their lifetimes. Polio is not gone, it is simply less prevalent. The man who invented the polio vaccine was a hero in his time. Dr. Paul Offit, author of the book Autism's False Prophets, helped developed the rotovirus vaccine. He has received death threats for his efforts.
Polio, tetanus, diptheria, pertussis, Hepatitis A and B, rotovirus, bacterial meningitis, chicken pox, are all real diseases that can be prevented with vaccines. I praised God when the meningitis vaccines were developed, as I saw that illness kill children and devastate families. The writer of the post put the word "diseases" in quotes. I assumed she meant they were not real; indeed they are real. Because she has not experienced them does not make them a fantasy.
So yes, I vaccinate my children, and encourage others to do so. Why? Because unvaccinated children are a risk to public health. We are losing herd immunity to illnesses that have become more-or-less dormant. The writer of the post I referenced asked why pro-vaccine parents would worry about kids spreading illness if their kids have been vaccinated. This suggests a lack of true research in this area. The varicella vaccine has does not guarantee a person will not get the disease. Varicella is known for having strains of varying virulence (ability to cause disease). A vaccinated person may still become ill from a highly virulent strain. It may be a milder form of the illness. There are still nasty strains of varicella out there, making the rounds because people are refusing the vaccination. A respondent to the thread said "we are not responsible for anyone else's family". Well, when you spread illness, and someone else's child becomes a victim, that makes YOU responsible for what happened to them. If you talk your friend out of vaccinating, and their baby dies from pertussis, well, you're responsible again. Maybe not legally, but morally. I say we should make people responsible for these actions civilly and legally.
When I posted something similar to this on my home school message board, I actually had people respond to say they prefer their child get the chicken pox "naturally". There is no natural form of an infectious disease. Its akin to playing Russian Roulette with your precious children.
When I say I firmly believe in vaccines, I say so as the mother 3, 2 of whom suffer from autism. Regarding that issue, I have done my research, and over a dozen studies have not found a link between autism and vaccines. Even researchers who hoped to find one did not. The British doctor who started the "vaccines cause autism" controversy has not only recanted, but his studies were flawed and could never be replicated by any credible researcher. Autism rates are the same in vaccinated vs. unvaccinated children. My son Joey was quiet and immobile as a fetus, long before he received any vaccines. Thimerisol, the vaccine component most associated with a link to autism, was removed from vaccines in 2000, simply to quash concerns, not because anyone found a connection. It took about a year to clear the shelves of thimerisol-containing vials. Autism rates have continued to skyrocket despite the change.
Anyone who tells you vaccines cause autism is deceiving you or has been deceived. Anyone who tells you they can sell you a more purified form of vaccines is either deceiving you or has been deceived.
I have come to believe that this fabricated autism-vaccine link gives parents some kind of hedge that makes them feel protected against the autism epidemic. But by playing into the fear-mongering, you become part of the problem that plagues us; less children will be vaccinated, more will get sick, innocents will suffer because their parents cater to the fashionable trends or bow to peer pressure. I'm excluding from that analysis a few mothers who I know really hold firm to their beliefs and actually have some basis for it; moms whom I've agreed to disagree with and still love and who still love me.
I'd also like to affirm and validate the other mothers who support my beliefs in this area but fear the repercussions if they speak out publicly.
ELLEN: This is in regard to vaccines, which, by the way, will be featured on the upcoming show on Dateline this Sunday. Yesterday, I was sent a post by a woman (Ms.M) who sought to encourage parents to "educate before they vaccinate". It was an attempt to discourage parents from following the current vaccine schedule for their children. The response I wish to share to this is below. It was written by a friend and parent of a child with autism. This parent has been a great help to me with my son and his numerous issues. She has read and studied the subject more than I, and lives daily with autism. She also teaches on autistic spectrum disorders. She has fought fearlessly for her son and helped numerous other parents of autistics in their struggle. She gave me permission to post her comments here. (See below under vaccinate)
NOTE FROM CHERI: Ms. M's post did not go into the serious health risks from not vaccinating children nor did it go into detail about research and how true evidence based research is conducted in this country, both good and bad. These are references listed below from Ms. M to be fair. I will tell you as a therapist who has worked in this field for 22 years, that I do not agree that vaccines are the cause of autistic spectrum disorder. I believe, like many who have studied this subject, that there is a cascade of variable events (not the same for everyone) that have led to an incredible increase in the number of children with autism. It is also true that we still do not know what autism is. I do not believe in simple answers to a complex problem. I feel that we need to keep our eyes open and keep looking. Sometimes you cannot see the forest for the trees. When I graduated from college, I was given a handout on autism and told that maybe I would work with a few children who had autism. That was in 1986. Do we need answers? Yes, the right answers. What I do believe and know to be true is that there is a health crisis coming in this country, unlike anything we have ever seen. Swine flu will be nothing compared to what may happen, if children are not vaccinated from deadly diseases with the ability to rapidly mutate to pandemic levels. This is a health issue that impacts us all.
-------------------------------------------------------------------------------------
VIEWPOINT 1 DO NOT VACCINATE:
Resources from Ms. M post:
www.marytocco.com
http://www.thinktwice.com
http://www.consumerhealth.org
Vaccines: Are They Really Safe & Effective?
by Neil Miller
What Every Parent Should Know About Childhood Immunization
by Jamie Murphy
The Vaccine Guide: Risks and Benefits for Children and Adults
by Randall Neustaedter
-----------------------------------------------------------------------------------
VIEWPOINT 2-VACCINATE:
"Ellen,
I want you to know that I'm right there with you on this. When I was in the history department (yep the history dept) most of my research was in the history of science and medicine / disease. One of my graduate papers was on polio epidemics in the United States and I learned two things through that experience: vaccines work very very well and there's still much of the fear-mongering puritanical pursuit of witches in the US--they've just chosen to move from the female witch persona to the invisible hand of death. While I didn't see first-hand, reading the accounts of the epidemic from parents and families put a healthy respect for vaccines in my mind and in my soul. Parents today have NO idea what a real epidemic is like. Many have no idea what it is like to lose a child, a young child to polio, typhus, or any other awful disease process. They have NO idea just how powerful the public health department becomes in a time of epidemic. I'll never forget accounts of the polio epidemics where affected children were removed from the homes and the parents clutching arms and taken to a hospital where they died, alone. Parents never had the ability to get closure, to see the body through a funeral--he or she just never came back. Parents forget about these things, or never knew about them to begin with. It saddens me that we have come so far in this respect, only to go right back.
The funny thing about this 'article' is that she constantly pushes the term 'research' and that parents should do their own research before vaccinating. I venture to guess her research is predicated upon Wakefield's flawed assumptions and poorly designed study that has sent parents running in droves away from the MMR due to the autism fears. So my question is this: does Ms. M know that Wakefield's research has been disproven time and time and time and time and time again? Does she know that his study cannot be replicated using his methodology and getting the same result? Does she know that he contaminated samples (whether knowingly or unknowingly, the effect is still contamination) in the study, thereby invalidating any result? Does she know that every study done since then has never seen a connection between autism and MMR? Does she know that thimerasol has been removed from vaccines in other countries long before the US did and their rates of ASD continue on the same trajectory as before? It changed nothing. Nothing.
People like Ms. M do not truly understand immunology. She has a popular science grasp on the concept and does not get how 'research' really works. I venture to guess she has not read much about immunology. I venture to guess she has not read much about virus mutation and how those who are unvaccinated are spreading a more virulent, mutated form of some of these diseases--look to the Carribbean to see how a brother was vaccinated against polio, sister wasn't and she became infected with polio where it then mutated and devastated the entire community. I venture to guess Ms. M doesn't fully understand that someone does a study and then someone tries to replicate it and get the same results. Then after so many such studies, we are looking at something that really takes hold and changes our belief in a process or issue. For Ms. M, one study on vaccines and autism was enough apparently.
My other thought is just exactly what kind of research is Ms. M reading? There's the kind that gets published in a journal that is peer reviewed by people who are independent and impartial and then there are journals that we created by an organization to 'push' their own research and agenda that is not peer-reviewed and if it is reviewed at all, it's reviewed by a bunch of like minded yes men who do not look at the study objectively--they don't look for flawed methodology, flawed assumptions, flawed data collection or analysis, or a series of poor references.
For me, and for those I continue to advocate for--this is a non-issue. A complete non-issue. They waste their time on a dead end street in the quest for knowledge about autism. They bang their head on an issue that will have no affect on the outcome of a autistic child's life. They spend all their time and energy yelling from the top of their lungs, 'vaccines, vaccines' and yet they do nothing about to push the quality of life for those with autism. They do nothing to push research in ways to help them communicate, learn, be social, or understand sensory aspects. They do nothing to help those with autism be more accepted by the community at large--they community now fears or pities the child because of this whipped up frenzy about vaccines and toxicity. They do nothing to help the self-esteem of a child with autism--to know that he or she is truly a gift and that we have far more to learn about him or her then they will ever learn from us.
I love her sentence about Jenny McCarthy and the fact that her son is autistic. It's ironic because Jenny McCarthy is for greening vaccines and not getting rid of them altogether. It's ironic because Jenny McCarthy believes that a gluten free diet has cured her child. There are many who say her child is clearly still autistic. Scare mongering is scare mongering. It does nothing, nothing at all constructive. Ms. M offers no other 'research' in her article that allows her readers to come to their own conclusion--she merely scares them into believing her belief. Well I for one don't believe her and what she predicates her knowledge on. So when she encourages her readers to do some research, I agree wholeheartedly. But one must understand that all research is not created equally, all studies are not created equally, and all conclusions reached from data are not created equally. So I would encourage her readers to not accept everything as fact before doing some reading of their own--including reading things that they might not always agree with. I read books from the 'biomedical' groups just as much as I try to read from the others. Too often, such extremists will not read anything but from those that agree with them--I can assure you this is not the way to go about forming an opinion, or at least not an educated one. My advice to Ms. M's readers: read them all, listen to all sides, learn for yourself and make your own opinion.
Those out there who blame parents for 'giving their child autism' because they chose to vaccinate have incredibly poor taste. Again, we have gone so far only to go right back. This is no different the 'refrigerator mother' hypothesis that we have fought to free these children and their parents from. Blame, it's a difficult cycle of grief to claw out of. For those that seek blatantly blame a mother for her child's autism can only be described as an insensitive wretch. It's not productive, it doesn't change that child's outcome in life. They make the sign of the witch as they walk by and pass judgment where judgment should not come. They pass judgment but forego compassion.
It wears on my soul that we come so far but step so far back. It wears on my soul that we have the power to be compassionate but are not. It wears on my soul that we have the power to see but do not.
Feel free to post this--someone should...
---------------------------------------------------------------------------------
MORE FROM ELLEN: I most strenuously disagree with the current trend towards not vaccinating children. As many of you know, I was employed as a nurse and staff educator at LaRabida Children's Hospital for a number of years before choosing to raise my family as a stay-at-home mother. I also have a Master's Degree in Science from DePaul University. LaRabida is located on the South side of Chicago.
Three years there were spent working in outpatient clinic. Part of my job was to administer vaccines. I gave between 10 and 100 a day, depending on the clinic. I cannot recall even one serious reaction to any vaccine that was administered there. Not one. I do, however, recall the very serious measles outbreak that occurred in the early 1990's. Over 500 children died of the measles in Chicago alone, and it was serious enough that we began giving measles vaccines to younger children. We were all incredibly relieved when the varicella vaccine became available. As I am sitting here, I am tearing up as I recall several beloved patients who died from the chicken pox.
My grandmother and mother feared polio during their lifetimes. Polio is not gone, it is simply less prevalent. The man who invented the polio vaccine was a hero in his time. Dr. Paul Offit, author of the book Autism's False Prophets, helped developed the rotovirus vaccine. He has received death threats for his efforts.
Polio, tetanus, diptheria, pertussis, Hepatitis A and B, rotovirus, bacterial meningitis, chicken pox, are all real diseases that can be prevented with vaccines. I praised God when the meningitis vaccines were developed, as I saw that illness kill children and devastate families. The writer of the post put the word "diseases" in quotes. I assumed she meant they were not real; indeed they are real. Because she has not experienced them does not make them a fantasy.
So yes, I vaccinate my children, and encourage others to do so. Why? Because unvaccinated children are a risk to public health. We are losing herd immunity to illnesses that have become more-or-less dormant. The writer of the post I referenced asked why pro-vaccine parents would worry about kids spreading illness if their kids have been vaccinated. This suggests a lack of true research in this area. The varicella vaccine has does not guarantee a person will not get the disease. Varicella is known for having strains of varying virulence (ability to cause disease). A vaccinated person may still become ill from a highly virulent strain. It may be a milder form of the illness. There are still nasty strains of varicella out there, making the rounds because people are refusing the vaccination. A respondent to the thread said "we are not responsible for anyone else's family". Well, when you spread illness, and someone else's child becomes a victim, that makes YOU responsible for what happened to them. If you talk your friend out of vaccinating, and their baby dies from pertussis, well, you're responsible again. Maybe not legally, but morally. I say we should make people responsible for these actions civilly and legally.
When I posted something similar to this on my home school message board, I actually had people respond to say they prefer their child get the chicken pox "naturally". There is no natural form of an infectious disease. Its akin to playing Russian Roulette with your precious children.
When I say I firmly believe in vaccines, I say so as the mother 3, 2 of whom suffer from autism. Regarding that issue, I have done my research, and over a dozen studies have not found a link between autism and vaccines. Even researchers who hoped to find one did not. The British doctor who started the "vaccines cause autism" controversy has not only recanted, but his studies were flawed and could never be replicated by any credible researcher. Autism rates are the same in vaccinated vs. unvaccinated children. My son Joey was quiet and immobile as a fetus, long before he received any vaccines. Thimerisol, the vaccine component most associated with a link to autism, was removed from vaccines in 2000, simply to quash concerns, not because anyone found a connection. It took about a year to clear the shelves of thimerisol-containing vials. Autism rates have continued to skyrocket despite the change.
Anyone who tells you vaccines cause autism is deceiving you or has been deceived. Anyone who tells you they can sell you a more purified form of vaccines is either deceiving you or has been deceived.
I have come to believe that this fabricated autism-vaccine link gives parents some kind of hedge that makes them feel protected against the autism epidemic. But by playing into the fear-mongering, you become part of the problem that plagues us; less children will be vaccinated, more will get sick, innocents will suffer because their parents cater to the fashionable trends or bow to peer pressure. I'm excluding from that analysis a few mothers who I know really hold firm to their beliefs and actually have some basis for it; moms whom I've agreed to disagree with and still love and who still love me.
I'd also like to affirm and validate the other mothers who support my beliefs in this area but fear the repercussions if they speak out publicly.
Tuesday, August 25, 2009
Globus Hystericus
Globus hystericus is the term given to the complaint of sensation of a lump in the throat causing difficulty with swallowing when there is no physical cause. However, a physical cause must be excluded. Globus hystericus is a Freudian diagnosis. The most common cause of GH is gastroesophageal reflux disease. GERD treatment may include a variety of modifications to diet, change in positioning at night for sleep and medications. The PCP's concern and responsibility is to rule throat cancer or other serious disorders. Another common globus diagnosis is psychiatric, a diagnosis made in part by excluding pathology and in part by identifying the stress or other factors predisposing to the pharyngeal constrictor muscle spasms.
For those who fail the reflux treatment, a fiberoptic laryngoscopy is strongly recommended. If negative, and it is suspected that the complaint is a stress related disorder, stress reduction or psychotherapy and feeding therapy with biofeedback may be helpful. Some patients are also treated with hypnosis. A barium swallow can help with assessment of how the patient manages a variety of different types and textures of food for the feeding specialist and dietitian to help manage diet and prevent weight loss or poor nutritional status. Supplements (ScandiShakes, Boost, Boost Breeze, Boost 1.5, Nutren Jr, Ensure, Pediasure)-depending on the patient's age and nutritional status)may be needed short term while dealing with these challenging patients.
For those who fail the reflux treatment, a fiberoptic laryngoscopy is strongly recommended. If negative, and it is suspected that the complaint is a stress related disorder, stress reduction or psychotherapy and feeding therapy with biofeedback may be helpful. Some patients are also treated with hypnosis. A barium swallow can help with assessment of how the patient manages a variety of different types and textures of food for the feeding specialist and dietitian to help manage diet and prevent weight loss or poor nutritional status. Supplements (ScandiShakes, Boost, Boost Breeze, Boost 1.5, Nutren Jr, Ensure, Pediasure)-depending on the patient's age and nutritional status)may be needed short term while dealing with these challenging patients.
Saturday, August 15, 2009
Pediatric Feeding Therapy: What to Do and How When and Why to Do It?
We are starting our fall lectures in September. We will be in Kansas City, MO on September 11 and 12th and this course will also come to Dallas, Texas on October 16 and 17th, 2009.
Therapists, we need to know how to do feeding therapy based on evidence based research. We need to be able to share our treatment philosophy and know what we are doing has merit and can result in improvement in outcomes for infants, children and their families. Health care is changing and therapists need to be able to support and justify services that we deliver.
Do you know how to treat infants who aspirate? What can you do during the critical first year of life to treat infants with dysphagia and develop pre-bottle, spoon, pre-cup feeding skills?
Do you know how to do swallowing therapy with toddlers?
Can you assess the nutritional status and problems with intake patterns of the children in your care?
Are your patients making steady gains in treatment and if not, what are you going to change?
What are you basing your therapy decisions on?
MORE ON THIS COURSE: The course is focused on the specifics of implementing evidence based pediatric feeding therapy techniques for infants and children. The presenters will teach presenters approaches to feeding therapy that are effective and safe from NICU through childhood. Specific techniques will be taught to help therapists thoroughly evaluate infants and children with feeding/swallowing
disorders. The course will give a wide range of techniques to help participants develop comprehensive, multidisciplinary intervention
programs.
This course will focus on specifics about how to structure an effective enjoyable
therapy session for a child. Topics will include how to evaluate the swallow, treatment for laryngeal penetration, nasopharyngeal reflux and silent aspiration, how to read a three day food log and growth charts, what foods to select to introduce in treatment, how to introduce food in a safe manner, how to shape behavior in a positive way, what to do for specific feeding problems/medical conditions and why, when, and how to advance the program. Videotaped feeding sessions and evaluations will be used throughout the presentation.
COURSE OBJECTIVES
By the conclusion of this course, the participant will be able to:
• recognize factors in the medical history that impact feeding and develop a greater
understanding of nutritional status, swallow function, and readiness for intervention;
• demonstrate knowledge of the complexity of pediatric feeding disorders and the need
for multidisciplinary assessment and development of customized, individualized
treatment techniques for infants and children;
• develop complex multidisciplinary treatment programs for infants and children with
prematurity, complex medical history, feeding aversion, food allergies, behavioral
and/or sensory-based feeding disorders;
• demonstrate understanding of the techniques of Pre-Chainingand treatment of the
medically fragile child and/or the non-oral feeder;
• demonstrate understanding of the techniques of therapeutic utensils, feeding
products, sensory and behavioral intervention strategies and the use of Fraker,
Walbert, and Cox’s Pre-Chaining and Food Chaining©techniques.
Therapists, we need to know how to do feeding therapy based on evidence based research. We need to be able to share our treatment philosophy and know what we are doing has merit and can result in improvement in outcomes for infants, children and their families. Health care is changing and therapists need to be able to support and justify services that we deliver.
Do you know how to treat infants who aspirate? What can you do during the critical first year of life to treat infants with dysphagia and develop pre-bottle, spoon, pre-cup feeding skills?
Do you know how to do swallowing therapy with toddlers?
Can you assess the nutritional status and problems with intake patterns of the children in your care?
Are your patients making steady gains in treatment and if not, what are you going to change?
What are you basing your therapy decisions on?
MORE ON THIS COURSE: The course is focused on the specifics of implementing evidence based pediatric feeding therapy techniques for infants and children. The presenters will teach presenters approaches to feeding therapy that are effective and safe from NICU through childhood. Specific techniques will be taught to help therapists thoroughly evaluate infants and children with feeding/swallowing
disorders. The course will give a wide range of techniques to help participants develop comprehensive, multidisciplinary intervention
programs.
This course will focus on specifics about how to structure an effective enjoyable
therapy session for a child. Topics will include how to evaluate the swallow, treatment for laryngeal penetration, nasopharyngeal reflux and silent aspiration, how to read a three day food log and growth charts, what foods to select to introduce in treatment, how to introduce food in a safe manner, how to shape behavior in a positive way, what to do for specific feeding problems/medical conditions and why, when, and how to advance the program. Videotaped feeding sessions and evaluations will be used throughout the presentation.
COURSE OBJECTIVES
By the conclusion of this course, the participant will be able to:
• recognize factors in the medical history that impact feeding and develop a greater
understanding of nutritional status, swallow function, and readiness for intervention;
• demonstrate knowledge of the complexity of pediatric feeding disorders and the need
for multidisciplinary assessment and development of customized, individualized
treatment techniques for infants and children;
• develop complex multidisciplinary treatment programs for infants and children with
prematurity, complex medical history, feeding aversion, food allergies, behavioral
and/or sensory-based feeding disorders;
• demonstrate understanding of the techniques of Pre-Chainingand treatment of the
medically fragile child and/or the non-oral feeder;
• demonstrate understanding of the techniques of therapeutic utensils, feeding
products, sensory and behavioral intervention strategies and the use of Fraker,
Walbert, and Cox’s Pre-Chaining and Food Chaining©techniques.
Thursday, August 6, 2009
How do I chew? Let me count the ways?
Therapists, teach your kids how to eat. First, make sure the swallow is safe by doing a thorough swallow study using Varibar barium....but in treatment, you must eat with the child in your sessions. Tell the child what your tongue, your teeth, your lips are doing. Show them what happens when you do it wrong. Put a towel on yourself, take a drink and let it dribble out. Laugh. Tell them what happened and why in fun ways that they can understand. You have to tell kids what your mouth is doing...are your cheeks making walls, are the walls squeezing your tongue, is your tongue sweeping like a broom, pushing or rolling or making the big slide? No kid wants to stare inside your mouth, but have fun with mirrors too. One of my patients had food collecting under his tongue. He, on his own, decided that the tongue was like a bridge and had to push the food out that got under the bridge. Then all I would have to say is, "uh-oh, oh boy, oh boy, there are chips trying to go under the bridge." He would laugh and push them out.
As for teeth, are your teeth just crunching up and down or are they crushing food up and down and side to side? I have some McDonald's chicken nuggets with faces. I dress them up in Halloween hats, etc. But they are great for me to show kids what the teeth do. I have them pretend one nugget is like a tooth. I put a cracker on the table and tap up and down. Well, just up and down is not enough. Your teeth saw food back and forth and crush and rip and tear. So, I show them the grinding motion of the teeth and the side to side. I teach them what foods you need to work your teeth hard with. I show them that all food becomes mashed up by the hard work our teeth do, so you really don't have to be afraid of soft or mashed food because that is what your teeth do anyway. Then we decide what we can do to make those soft foods better and safer to taste. I always use my puppets that eat (mine is Starvin' Marvin) and that nasty mouth from Super Duper together and show kids what happens inside the mouth too. For example, show them what your mouth does for crunchy food (Triscuits). Tell them the other teeth think that food is too loud vs. frosting. Giggle about cold food on the teeth or sips of warm hot cocoa. Make a social story about your mouth and teeth.
My absolute favorite thing in the world is the DuoSpoon, designed by my dear friend Marsha Dunn Klein. You can order these on Marsha's website. I have used this with so many kids and dipped so many things on it and I see progress. It is an amazing product. I absolutely love it and the TriChew teether. Thank you Marsha for bringing us all your gifts and talents and products.
These things may help you in your treatment plans.
As for teeth, are your teeth just crunching up and down or are they crushing food up and down and side to side? I have some McDonald's chicken nuggets with faces. I dress them up in Halloween hats, etc. But they are great for me to show kids what the teeth do. I have them pretend one nugget is like a tooth. I put a cracker on the table and tap up and down. Well, just up and down is not enough. Your teeth saw food back and forth and crush and rip and tear. So, I show them the grinding motion of the teeth and the side to side. I teach them what foods you need to work your teeth hard with. I show them that all food becomes mashed up by the hard work our teeth do, so you really don't have to be afraid of soft or mashed food because that is what your teeth do anyway. Then we decide what we can do to make those soft foods better and safer to taste. I always use my puppets that eat (mine is Starvin' Marvin) and that nasty mouth from Super Duper together and show kids what happens inside the mouth too. For example, show them what your mouth does for crunchy food (Triscuits). Tell them the other teeth think that food is too loud vs. frosting. Giggle about cold food on the teeth or sips of warm hot cocoa. Make a social story about your mouth and teeth.
My absolute favorite thing in the world is the DuoSpoon, designed by my dear friend Marsha Dunn Klein. You can order these on Marsha's website. I have used this with so many kids and dipped so many things on it and I see progress. It is an amazing product. I absolutely love it and the TriChew teether. Thank you Marsha for bringing us all your gifts and talents and products.
These things may help you in your treatment plans.
Tuesday, August 4, 2009
Question of the Week: Structuring Your Treatment for Success
Q. What should you do as a therapist if you have a patient who is approaching school age who can drink liquids successfully, has tried a bite of two of Jell-O (a solid that becomes liquid in your mouth) and enjoys licking flavor off of high flavor solids but cannot bite, chew and swallow? Treatment so far has worked on desensitization, exploration from a sensory perspective and the child has made gains, but not expanded the diet.
A. We would use a combination of Marsha Dunn Klein's Get Permission Approach and Food Chaining. We would focus on teaching the child about eating, theme based activities such as Luau's, bake sales, cooking "shows" and teaching the child about health, food and nutrition in fun ways.
For this particular case, things are not progressing with food repertoire because there is too much of a gulf between what liquids are and what the solids are like. The child does not know how to chew. The patient likes to lick but has no motor plan to know how to chew. Food is not liquid. Liquid for the most part is always liquid and does not change except it gets a bit thicker at time. You chew all foods differently. Some foods are always different (one banana is smooth and more green, the other is mushy and ripe) and it is those changes in ripeness, texture and so on that throw many of our kids off. This is why so many of our kids like processed foods that are always the same (chips, crackers, etc). A child cannot be expected to know how to chew who has not ever successfully chewed up a bite of food and swallowed it. You have to break it down to a level where he can succeed. Not just at the level of the food and combining foods for food chains, it is much, much more than that.
First of all I would focus on helping the child be successful again with Jell-O. I would not push it, because once you are successful with a food you want it to happen again and the child feels it. If you push, he will never, ever again try that food. So in sessions, play around with Jell-O. Different flavors,different colors, different shapes (make those fun Jell-O molds, make a Jell-O rainbow, use the Jell-O cups and make them your volcanoes for your Luau theme). Poke them with toothpicks and see which one you like the taste of the best. Cut and slice Jell-O. Watch it melt and turn to liquid again. Put a straw in it and suck the Jell-O out of the base of your straw for your oral motor activities that are fun. There is a lot you can do. Add carbonation so they have a bit of fizzy taste and see if the child likes that or not. Cookie cutters...so on. But don't do Jell-O every day, every session, just keep adding fun ways to explore it in treatment while introducing some new things too.
Like, for example Cool Whip or Reddi-Whip in the fun cans. You can work on it on the top of your Jell-O or on your divided plate and work toward tasting this very easy to eat fluffed texture food. Not with a spoon, dip tasting spoons, DuoSpoons, curly straws, toothpicks and other fun utensils in it. It does not coat like heavy puddings or other dense thick consistencies that may be too much to handle. If that is handled, explore whipped fluff style desserts and yogurts. I also have a lot of kids who like lemon, lemonade, lemon juice from a real lemon, later whipped lemon fluff dessert, lemon sherbet (much different that ice cream), lemon pie filling (not creamy, the gel type filling) and later to Key Lime Pie filling. I have had many, many kids do this successfully.
But how do you get kids to taste? First of all, get some other kids in there. Make your own cooking show. Have Chef hats, aprons and cook and play. Use a video camera and film them cooking, stirring and tasting to see if their food is too "hot" or too cold...have fun. Use puppets that eat in your sessions. Children learn so much from other kids. Children learn by play, they model each other and play...well that is their way to explore, learn and grow. Get someone who can model tasting, don't push it, don't say "take a bite" to the child you are working with...but what can you do? Get some little tiny paint brushes and brush a bit of flavor on the pads of your fingers or your fingernails if you want to have fun with "nail polish." Say "I am going to take my polish off now" and lick the "paint" off two fingers and tell the child about how it tasted...don't put too much on, just a tiny amount. Or have the child paint it on for you. Or dip a chopstick and a Nuk brush as your tasting utensils or dip a straw in the flavors you are going to try. Have the child hand it to a parent, sibling or friend. Say "I am going to put a dot of this on the top or on the side of my tongue" and put it on. Say mmmmm! Take a photo with the digital camera of yourself with taste on your tongue, or take a picture of the other child, not the child in treatment, getting a taste. Make silly faces and have fun but at no time direct the child in treatment to eat or take a bite.
Talk about bites by size, the wonderful Marsha Dunn Klein does this with mouse bites, bunny bites to elephant bites as size increases. Once the pressure is off, some children will go ahead and taste it just being allowed to choose and having this model. I have had dress up activities where I have fun hats, feather boas,clunky jewelry and I have pureed fruit as our lipstick. We look in the mirror and use a tiny sponge to put on red lipstick. We take our pictures. The kids get a taste of pureed fruit on the lip without being pushed to take a bite. You may only be swallowing flavored saliva at this point but it is a start. You are moving in the right direction.
Make a solid crunchy food something the child has a chance to be able to "chew" by crumbing programs. Crush the solid food with rolling pins in Ziploc bags or with toy cars, etc (tell the kids our teeth do this) and get tiny specks of it on the finger and taste it. Follow the same low pressure approach with lots of modeling. Put the crumbs on a variety of utensils, fingers, in ladels and see if you can get your tongue inside and lick it out. See if you can work your way up to larger crumbs. This progresses to meltable solids like graham cracker or vanilla wafer. You try to run your teeth over it and get a crumb off with your teeth. See if the child will try to do the same thing.
Keep offering new foods to learn about, look at and explore. Use your divided plates and consider tastes of other liquids such as broth soups (tortilla, onion, chicken noodle, Egg drop, tomato) and you put one drop from an eye dropper of Mommy's soup (cream based or cheese soup) into the spoon or mix a bit of thickened cream chicken soup into the chicken broth in a separate small bowl. See if you like it (how it looks, how it smells, have the child give mommy a bite or a sister or brother a bite).
These are just some ideas of how to get started. I would like to see a child like this work toward other foods such as watermelon (puree to a slushie), strawberry ice cream topping/ice/ real strawberries in the Magic Bullet as a drink, other fruit slush drinks, Fruit Chillers, Dole 100% fruit bars, Icees, shaved ice, Ice Pops and work toward thicker texture of frozen Go-gurts, to fudge bars, orange dream pops, ice milk and later to things like cantaloupe, watermelon, mango, salsa, spaghetti sauce, chocolate sauce, pureed fruits and gradually keep working to expand the diet.
These types of patients are very challenging and it is very important to work on the swallow and teach the child what you have to do to taste and swallow these food items. Take the mystery out of chewing. Teach the child where to put the food in the mouth, how to bite down (sensory wise this feels freaky!), what teeth you use, what your tongue does next, what happens when you swallow...use puppets that eat and model, model, model...cut tiny slivers off of a food and make it something that is not so intimidating and overwhelming. Work up in bite size and texture as tolerated.
Is this easy? No
Does it take a lot of work and a lot of patience? Yes
Can it be done? Yes!!
A. We would use a combination of Marsha Dunn Klein's Get Permission Approach and Food Chaining. We would focus on teaching the child about eating, theme based activities such as Luau's, bake sales, cooking "shows" and teaching the child about health, food and nutrition in fun ways.
For this particular case, things are not progressing with food repertoire because there is too much of a gulf between what liquids are and what the solids are like. The child does not know how to chew. The patient likes to lick but has no motor plan to know how to chew. Food is not liquid. Liquid for the most part is always liquid and does not change except it gets a bit thicker at time. You chew all foods differently. Some foods are always different (one banana is smooth and more green, the other is mushy and ripe) and it is those changes in ripeness, texture and so on that throw many of our kids off. This is why so many of our kids like processed foods that are always the same (chips, crackers, etc). A child cannot be expected to know how to chew who has not ever successfully chewed up a bite of food and swallowed it. You have to break it down to a level where he can succeed. Not just at the level of the food and combining foods for food chains, it is much, much more than that.
First of all I would focus on helping the child be successful again with Jell-O. I would not push it, because once you are successful with a food you want it to happen again and the child feels it. If you push, he will never, ever again try that food. So in sessions, play around with Jell-O. Different flavors,different colors, different shapes (make those fun Jell-O molds, make a Jell-O rainbow, use the Jell-O cups and make them your volcanoes for your Luau theme). Poke them with toothpicks and see which one you like the taste of the best. Cut and slice Jell-O. Watch it melt and turn to liquid again. Put a straw in it and suck the Jell-O out of the base of your straw for your oral motor activities that are fun. There is a lot you can do. Add carbonation so they have a bit of fizzy taste and see if the child likes that or not. Cookie cutters...so on. But don't do Jell-O every day, every session, just keep adding fun ways to explore it in treatment while introducing some new things too.
Like, for example Cool Whip or Reddi-Whip in the fun cans. You can work on it on the top of your Jell-O or on your divided plate and work toward tasting this very easy to eat fluffed texture food. Not with a spoon, dip tasting spoons, DuoSpoons, curly straws, toothpicks and other fun utensils in it. It does not coat like heavy puddings or other dense thick consistencies that may be too much to handle. If that is handled, explore whipped fluff style desserts and yogurts. I also have a lot of kids who like lemon, lemonade, lemon juice from a real lemon, later whipped lemon fluff dessert, lemon sherbet (much different that ice cream), lemon pie filling (not creamy, the gel type filling) and later to Key Lime Pie filling. I have had many, many kids do this successfully.
But how do you get kids to taste? First of all, get some other kids in there. Make your own cooking show. Have Chef hats, aprons and cook and play. Use a video camera and film them cooking, stirring and tasting to see if their food is too "hot" or too cold...have fun. Use puppets that eat in your sessions. Children learn so much from other kids. Children learn by play, they model each other and play...well that is their way to explore, learn and grow. Get someone who can model tasting, don't push it, don't say "take a bite" to the child you are working with...but what can you do? Get some little tiny paint brushes and brush a bit of flavor on the pads of your fingers or your fingernails if you want to have fun with "nail polish." Say "I am going to take my polish off now" and lick the "paint" off two fingers and tell the child about how it tasted...don't put too much on, just a tiny amount. Or have the child paint it on for you. Or dip a chopstick and a Nuk brush as your tasting utensils or dip a straw in the flavors you are going to try. Have the child hand it to a parent, sibling or friend. Say "I am going to put a dot of this on the top or on the side of my tongue" and put it on. Say mmmmm! Take a photo with the digital camera of yourself with taste on your tongue, or take a picture of the other child, not the child in treatment, getting a taste. Make silly faces and have fun but at no time direct the child in treatment to eat or take a bite.
Talk about bites by size, the wonderful Marsha Dunn Klein does this with mouse bites, bunny bites to elephant bites as size increases. Once the pressure is off, some children will go ahead and taste it just being allowed to choose and having this model. I have had dress up activities where I have fun hats, feather boas,clunky jewelry and I have pureed fruit as our lipstick. We look in the mirror and use a tiny sponge to put on red lipstick. We take our pictures. The kids get a taste of pureed fruit on the lip without being pushed to take a bite. You may only be swallowing flavored saliva at this point but it is a start. You are moving in the right direction.
Make a solid crunchy food something the child has a chance to be able to "chew" by crumbing programs. Crush the solid food with rolling pins in Ziploc bags or with toy cars, etc (tell the kids our teeth do this) and get tiny specks of it on the finger and taste it. Follow the same low pressure approach with lots of modeling. Put the crumbs on a variety of utensils, fingers, in ladels and see if you can get your tongue inside and lick it out. See if you can work your way up to larger crumbs. This progresses to meltable solids like graham cracker or vanilla wafer. You try to run your teeth over it and get a crumb off with your teeth. See if the child will try to do the same thing.
Keep offering new foods to learn about, look at and explore. Use your divided plates and consider tastes of other liquids such as broth soups (tortilla, onion, chicken noodle, Egg drop, tomato) and you put one drop from an eye dropper of Mommy's soup (cream based or cheese soup) into the spoon or mix a bit of thickened cream chicken soup into the chicken broth in a separate small bowl. See if you like it (how it looks, how it smells, have the child give mommy a bite or a sister or brother a bite).
These are just some ideas of how to get started. I would like to see a child like this work toward other foods such as watermelon (puree to a slushie), strawberry ice cream topping/ice/ real strawberries in the Magic Bullet as a drink, other fruit slush drinks, Fruit Chillers, Dole 100% fruit bars, Icees, shaved ice, Ice Pops and work toward thicker texture of frozen Go-gurts, to fudge bars, orange dream pops, ice milk and later to things like cantaloupe, watermelon, mango, salsa, spaghetti sauce, chocolate sauce, pureed fruits and gradually keep working to expand the diet.
These types of patients are very challenging and it is very important to work on the swallow and teach the child what you have to do to taste and swallow these food items. Take the mystery out of chewing. Teach the child where to put the food in the mouth, how to bite down (sensory wise this feels freaky!), what teeth you use, what your tongue does next, what happens when you swallow...use puppets that eat and model, model, model...cut tiny slivers off of a food and make it something that is not so intimidating and overwhelming. Work up in bite size and texture as tolerated.
Is this easy? No
Does it take a lot of work and a lot of patience? Yes
Can it be done? Yes!!
Saturday, August 1, 2009
My Luke...Our journey treating Cyclic Vomiting Syndrome Continues
Hi All
Luke's Mom, Cheri, here. When dealing with Luke, I am not "Cheri Fraker: International Feeding Specialist"...I am just Mom.
Wow, what a week we had for Luke's 16th birthday. My Luke is the reason I do what I do as a therapist. But to understand what we just found out, requires a bit of background information... Starting at 8 months, Luke started having severe vomiting spells. It started early in the morning hours and he would vomit over and over again for about 2 days. I want to make this clear...this can kill a baby. We did not get the help we needed. We were told "bowel rest" in other words, don't feed him and let the illness pass. We were not directed to come to the hospital. We were not given IV's. I remember telling the doctor that there was no smell of bile. I was just brushed off. Now, Luke is alive because God is good. No baby can vomit like that without serious risks. So if your baby vomits severely, get medical help. I was told stupid things like "he is ok if he is still producing tears or urine." A baby will still produce tears and urine and at the same time be dangerously dehydrated. How Luke did not die of a stroke or heart attack is simply that God saved him. I just survived these episodes. I sat in a chair and held him, towels on everything around us and Randy emptied the bowl and brought it back to me. Because we didn't know what to do and every moment we were tending to him, we listened. I didn't know better, I was in mommy brain. I did not think like a peds GI or a therapist. I hadn't been taught yet about what Luke had or how to care for him. Or about feeding...those days were ahead for me. I was just a mom with a sick baby. Then it went away. He was just fine. For about 8 weeks and then it happened again. This pattern repeated itself over and over until he was 2 years old. We were completely healthy between these episodes. He always had something, an ear infection, strep throat or something and I was told that was why. But it never made sense to me, never felt right. When he was two, one morning he started vomiting at about 4 am. It was bad. Peaked at 50 times per hour. There was almost no break. Relentless. He looked at me and said, "I am going to die now Mommy, goodbye Mommy." And he went into hypovolemic shock. We were in the ER. It was horrible. I knew something was wrong. Again, no answers. The vomiting persisted and Luke would tell me, "the monster is coming" and we would get out the bowl and towels again.
Fast forward to age 6....After another horrific vomiting spell and no one acting, we made a change. We now had our wonderful pediatrician Michelle Miner, MD and we went to see Mark Fishbein, MD, peds GI, who evaluated Luke and diagnosed him with Cyclic Vomiting Syndrome. He saved us. I write more about how all this happened in our book. He started a treatment plan for Luke. Luke got better. I started working with Mark. I told him to teach me how to help Luke, other kids and let no other parent and child go through what Randy, Luke and I went through. Luke was started on reflux meds, Imitrex nasal spray for the vomiting spells, Zofran for the nausea and IV's and hospitalization if the attacks could not be stopped. He did great. We loved Dr Fishbein, he was always there for us too. Holidays and in the middle of the night, he put Luke right in the hospital and had standing orders for his care, down to the Emla cream to numb him so the IV's would not hurt my dehydrated boy. When he moved to Chicago (Children's Memorial Hospital) several years ago, it killed us. But that is another story for another day...
Now fast forward to age 16... Luke, for all his life, did not gain weight well. Now, he ate all kinds of food, but he never ate a lot. It made sense to me...imagine what vomiting an estimated 65,000 times in your life (no joke here, this is for real) will do to your esophagus? Well, as a teenager, he would stop eating in the middle of a meal. He has been very healthy, maybe has a cyclic attack a couple times a year. Most of them we can stop. But, he recently had a vomiting spell that took us to the hospital by ambulance. He was vomiting up blood and I think he aspirated it. He couldn't get a deep breath and his side hurt very bad. This is not typical for us. He also had been diagnosed with "exercise induced asthma" and sleep problems, chronic sinus problems, so after all of this settled down again, I took him to my another of my favorite doctors in the world, Sandra Ettema, MD, otolaryngologist at the SIU School of Medicine. She scoped him and found that his upper airway had signs of damage from reflux. Luke had a cobblestoned appearance to the tissue up to the level of the nasopharynx. So Prevacid was not controlling Luke's reflux, he had damage to the level of his upper airway, he was likely aspirating gastric content at night (this is what was going on instead of exercise induced asthma) and he wasn't eating well from pain. Dr Ettema started him on Nexium and Zantac at night. Did it help? In three weeks, Luke is a different kid. He is eating me out of house and home. No pain, sleeping well and healing a very angry esophagus and upper airway. Now I just have to deal with mommy guilt all over again.
You get used to chronic health issues, for me and for our family, abnormal..vomiting over and over for days... became normal. It became normal to have a kid who didn't eat well. It was understandable and we were on medications. We thought we were doing everything we could do, but we were wrong. It does not mean that more could not be done for him. Remember, esophagitis, esophageal discomfort, reflux esophagitis can be a major component of feeding problems in ALL kids. Especially kids with CVS, but I am seeing huge improvement in young children who are given a trial of reflux meds. Don't underestimate the underlying medical issues when dealing with feeding problems.
Luke's Mom, Cheri, here. When dealing with Luke, I am not "Cheri Fraker: International Feeding Specialist"...I am just Mom.
Wow, what a week we had for Luke's 16th birthday. My Luke is the reason I do what I do as a therapist. But to understand what we just found out, requires a bit of background information... Starting at 8 months, Luke started having severe vomiting spells. It started early in the morning hours and he would vomit over and over again for about 2 days. I want to make this clear...this can kill a baby. We did not get the help we needed. We were told "bowel rest" in other words, don't feed him and let the illness pass. We were not directed to come to the hospital. We were not given IV's. I remember telling the doctor that there was no smell of bile. I was just brushed off. Now, Luke is alive because God is good. No baby can vomit like that without serious risks. So if your baby vomits severely, get medical help. I was told stupid things like "he is ok if he is still producing tears or urine." A baby will still produce tears and urine and at the same time be dangerously dehydrated. How Luke did not die of a stroke or heart attack is simply that God saved him. I just survived these episodes. I sat in a chair and held him, towels on everything around us and Randy emptied the bowl and brought it back to me. Because we didn't know what to do and every moment we were tending to him, we listened. I didn't know better, I was in mommy brain. I did not think like a peds GI or a therapist. I hadn't been taught yet about what Luke had or how to care for him. Or about feeding...those days were ahead for me. I was just a mom with a sick baby. Then it went away. He was just fine. For about 8 weeks and then it happened again. This pattern repeated itself over and over until he was 2 years old. We were completely healthy between these episodes. He always had something, an ear infection, strep throat or something and I was told that was why. But it never made sense to me, never felt right. When he was two, one morning he started vomiting at about 4 am. It was bad. Peaked at 50 times per hour. There was almost no break. Relentless. He looked at me and said, "I am going to die now Mommy, goodbye Mommy." And he went into hypovolemic shock. We were in the ER. It was horrible. I knew something was wrong. Again, no answers. The vomiting persisted and Luke would tell me, "the monster is coming" and we would get out the bowl and towels again.
Fast forward to age 6....After another horrific vomiting spell and no one acting, we made a change. We now had our wonderful pediatrician Michelle Miner, MD and we went to see Mark Fishbein, MD, peds GI, who evaluated Luke and diagnosed him with Cyclic Vomiting Syndrome. He saved us. I write more about how all this happened in our book. He started a treatment plan for Luke. Luke got better. I started working with Mark. I told him to teach me how to help Luke, other kids and let no other parent and child go through what Randy, Luke and I went through. Luke was started on reflux meds, Imitrex nasal spray for the vomiting spells, Zofran for the nausea and IV's and hospitalization if the attacks could not be stopped. He did great. We loved Dr Fishbein, he was always there for us too. Holidays and in the middle of the night, he put Luke right in the hospital and had standing orders for his care, down to the Emla cream to numb him so the IV's would not hurt my dehydrated boy. When he moved to Chicago (Children's Memorial Hospital) several years ago, it killed us. But that is another story for another day...
Now fast forward to age 16... Luke, for all his life, did not gain weight well. Now, he ate all kinds of food, but he never ate a lot. It made sense to me...imagine what vomiting an estimated 65,000 times in your life (no joke here, this is for real) will do to your esophagus? Well, as a teenager, he would stop eating in the middle of a meal. He has been very healthy, maybe has a cyclic attack a couple times a year. Most of them we can stop. But, he recently had a vomiting spell that took us to the hospital by ambulance. He was vomiting up blood and I think he aspirated it. He couldn't get a deep breath and his side hurt very bad. This is not typical for us. He also had been diagnosed with "exercise induced asthma" and sleep problems, chronic sinus problems, so after all of this settled down again, I took him to my another of my favorite doctors in the world, Sandra Ettema, MD, otolaryngologist at the SIU School of Medicine. She scoped him and found that his upper airway had signs of damage from reflux. Luke had a cobblestoned appearance to the tissue up to the level of the nasopharynx. So Prevacid was not controlling Luke's reflux, he had damage to the level of his upper airway, he was likely aspirating gastric content at night (this is what was going on instead of exercise induced asthma) and he wasn't eating well from pain. Dr Ettema started him on Nexium and Zantac at night. Did it help? In three weeks, Luke is a different kid. He is eating me out of house and home. No pain, sleeping well and healing a very angry esophagus and upper airway. Now I just have to deal with mommy guilt all over again.
You get used to chronic health issues, for me and for our family, abnormal..vomiting over and over for days... became normal. It became normal to have a kid who didn't eat well. It was understandable and we were on medications. We thought we were doing everything we could do, but we were wrong. It does not mean that more could not be done for him. Remember, esophagitis, esophageal discomfort, reflux esophagitis can be a major component of feeding problems in ALL kids. Especially kids with CVS, but I am seeing huge improvement in young children who are given a trial of reflux meds. Don't underestimate the underlying medical issues when dealing with feeding problems.
Diagnosed with Oral Aversion or Feeding Aversion? Getting Started: Parents, Therapists have you covered your bases? Ask the right questions!
Hi All
Had a very nice mom write to me today and I decided to post some of this information to help others trying to sort out what it means to have a child with feeding aversion or oral aversion. Please know, most kids are not aversive to EVERYTHING or EVERY food. Define the aversion. The child that happily eats chicken nuggets is not aversive to eating nuggets. What else can we give that child to increase the happiness factor while eating a wider range of foods. Why are chicken nuggets ok and other foods are not? There are reasons why children do this. That is what Food Chaining is all about. Forming a chain between what you eat well and what you can't eat well...yet.
WHAT ARE THE KEY FACTORS IN DIAGNOSIS AND TREATMENT OF A FEEDING DISORDER? FIND OUT THE FOLLOWING...
-What does your child eat? What does he enjoy eating? Are you still offering new food or did you give up? He can't eat it if you don't offer it. Offer it in a fun way, don't pressure. Think of how you learn to eat a new food (oysters on the half shell, frog legs, sushi)...did pressure help you eat it? Did anyone force you?
-Do you feel something else is going on? Listen to your instincts as a parent!
-Is his health ok? This is huge. Health issues, medications all impact eating.
-Is the child constipated? If so, is he on Miralax or some other treatment regimen consistently? These things only work if given daily. Reduce amount but give daily when weaning off.
-Does the child have reflux? "Silent" reflux? This is like we adults have, we don't "spit up" but we reflux and have heartburn and discomfort. On Prevacid or Zantac?
-Weight/growth ok? Too low and food can taste funny and odd after-taste. Some of our little ones are built up a bit with Carnation Instant Breakfast or Pediasure.
-Portions ok? Kid portions at this age are a T per age. So a two year old child would eat 2T of fruit, 2T of veg and 2 T of meat for a correctly portioned meal. Too much can overwhelm.
-Are you on a schedule of meals and snacks or does your child graze (nibble or sip food all day?)
-Juice should be limited to 4 to 6 ounces per day. Juice kills appetite and is no more nutrition than soda (unless you are doing Pomegranate juice, V-8 splash, tomato juice or a real juice). Get rid of soda, tea and Kool Aid. Water between meals and snacks. Flavored water is ok.
-Milk where it should be (for example a toddler needs 16-24 ounces) per day? Too much milk can lead to anemia and kill appetite too. Give milk with meals and snacks. Flavored milk or drinkable yogurt is just fine too.
-Eczema or red rashes that may indicate food allergy? Eczema, vomiting and constipation during the first year of life? These are big red flags for allergic processes. See a peds GI or pediatric dietitian (not a nutritionist, a dietitian)
-Congestion or limited intake of liquid (example: won't take more than 4 ounces of liquid no matter what) that may indicate problems with swallowing?
-Sensitive to tags in clothing, noises, smells, textures, touch, difficulty tolerating stimulating environments or seem to always be on "crash and burn" mode, climbing the walls that may indicate a sensory issue?
-Is his behavior ok, all the time except at meals?
Children refuse for a reason. Always. My job is to listen to their reasons.
Now, many of the things I suggested for Z in earlier posts would likely work for many children. Just taking the pressure out of this, using a divided plate, learning about food, no pressure at meals...(sounds impossible, I know, when you feel such stress at each meal to make sure he eats.) But look at it from his perspective, does coming to the table bring him joy or discomfort and fear? Is he the focus of every meal? Does he eat better in one environment over another?
These are the things you need a firm handle on before starting therapy. You need to keep looking at these issues and not just assume the child has a behavior problem. Behaviors can rise out of a physical, emotional, oral motor or sensory based feeding disorder, but that is not the root of the problem.
THERAPY SESSIONS: Do I need therapy? That depends on what is going on with eating, is it typical picky eating that does not interfere with life or is it more problem eating. More on this in this blog posts and in the Food Chaining book. There is no substitute for assessment by a skilled feeding team. These disorders are very challenging and I know I need my team members to help me when I evaluate children. Now, not all therapy is good therapy and parents need to be a major part of the treatment program. Who is treating? OT or Speech? Hopefully both! How experienced is the team? What is their treatment philosophy? Are sessions fun? Do they respect the child? There should be no crying, gagging or vomiting in a session. Is the session length kid friendly (about 30-45 min which about 25 of that is a meal), therapist eat with your child, are they cooking with him? Is someone poking around his mouth like a dentist chair session or letting him chew on fun things that help desensitize his mouth? Is there a reason behind what they are doing? Are you seeing gains after a few weeks of treatment? Months of treatment, no report of or sign of true progress? Something needs to change.
ABOUT THE FOOD CHAINING BOOK: Parents ask me about the book a lot. We wrote this for parents but it benefits therapists too. The book is also on Amazon or see if your library will order it for you. I am not in the "book selling" business, we wrote this to give parents a very affordable guide from all of our team (peds GI, dietitian, OT, ST, psychology) to help parents negotiate that wild and twisting road that is "Feeding Aversion." I did not get the help I needed for my Luke until he was 6 years old. My job, while God lets me live on this earth, is to stop that from happening to other children and their parents.
Hope this helps!
Had a very nice mom write to me today and I decided to post some of this information to help others trying to sort out what it means to have a child with feeding aversion or oral aversion. Please know, most kids are not aversive to EVERYTHING or EVERY food. Define the aversion. The child that happily eats chicken nuggets is not aversive to eating nuggets. What else can we give that child to increase the happiness factor while eating a wider range of foods. Why are chicken nuggets ok and other foods are not? There are reasons why children do this. That is what Food Chaining is all about. Forming a chain between what you eat well and what you can't eat well...yet.
WHAT ARE THE KEY FACTORS IN DIAGNOSIS AND TREATMENT OF A FEEDING DISORDER? FIND OUT THE FOLLOWING...
-What does your child eat? What does he enjoy eating? Are you still offering new food or did you give up? He can't eat it if you don't offer it. Offer it in a fun way, don't pressure. Think of how you learn to eat a new food (oysters on the half shell, frog legs, sushi)...did pressure help you eat it? Did anyone force you?
-Do you feel something else is going on? Listen to your instincts as a parent!
-Is his health ok? This is huge. Health issues, medications all impact eating.
-Is the child constipated? If so, is he on Miralax or some other treatment regimen consistently? These things only work if given daily. Reduce amount but give daily when weaning off.
-Does the child have reflux? "Silent" reflux? This is like we adults have, we don't "spit up" but we reflux and have heartburn and discomfort. On Prevacid or Zantac?
-Weight/growth ok? Too low and food can taste funny and odd after-taste. Some of our little ones are built up a bit with Carnation Instant Breakfast or Pediasure.
-Portions ok? Kid portions at this age are a T per age. So a two year old child would eat 2T of fruit, 2T of veg and 2 T of meat for a correctly portioned meal. Too much can overwhelm.
-Are you on a schedule of meals and snacks or does your child graze (nibble or sip food all day?)
-Juice should be limited to 4 to 6 ounces per day. Juice kills appetite and is no more nutrition than soda (unless you are doing Pomegranate juice, V-8 splash, tomato juice or a real juice). Get rid of soda, tea and Kool Aid. Water between meals and snacks. Flavored water is ok.
-Milk where it should be (for example a toddler needs 16-24 ounces) per day? Too much milk can lead to anemia and kill appetite too. Give milk with meals and snacks. Flavored milk or drinkable yogurt is just fine too.
-Eczema or red rashes that may indicate food allergy? Eczema, vomiting and constipation during the first year of life? These are big red flags for allergic processes. See a peds GI or pediatric dietitian (not a nutritionist, a dietitian)
-Congestion or limited intake of liquid (example: won't take more than 4 ounces of liquid no matter what) that may indicate problems with swallowing?
-Sensitive to tags in clothing, noises, smells, textures, touch, difficulty tolerating stimulating environments or seem to always be on "crash and burn" mode, climbing the walls that may indicate a sensory issue?
-Is his behavior ok, all the time except at meals?
Children refuse for a reason. Always. My job is to listen to their reasons.
Now, many of the things I suggested for Z in earlier posts would likely work for many children. Just taking the pressure out of this, using a divided plate, learning about food, no pressure at meals...(sounds impossible, I know, when you feel such stress at each meal to make sure he eats.) But look at it from his perspective, does coming to the table bring him joy or discomfort and fear? Is he the focus of every meal? Does he eat better in one environment over another?
These are the things you need a firm handle on before starting therapy. You need to keep looking at these issues and not just assume the child has a behavior problem. Behaviors can rise out of a physical, emotional, oral motor or sensory based feeding disorder, but that is not the root of the problem.
THERAPY SESSIONS: Do I need therapy? That depends on what is going on with eating, is it typical picky eating that does not interfere with life or is it more problem eating. More on this in this blog posts and in the Food Chaining book. There is no substitute for assessment by a skilled feeding team. These disorders are very challenging and I know I need my team members to help me when I evaluate children. Now, not all therapy is good therapy and parents need to be a major part of the treatment program. Who is treating? OT or Speech? Hopefully both! How experienced is the team? What is their treatment philosophy? Are sessions fun? Do they respect the child? There should be no crying, gagging or vomiting in a session. Is the session length kid friendly (about 30-45 min which about 25 of that is a meal), therapist eat with your child, are they cooking with him? Is someone poking around his mouth like a dentist chair session or letting him chew on fun things that help desensitize his mouth? Is there a reason behind what they are doing? Are you seeing gains after a few weeks of treatment? Months of treatment, no report of or sign of true progress? Something needs to change.
ABOUT THE FOOD CHAINING BOOK: Parents ask me about the book a lot. We wrote this for parents but it benefits therapists too. The book is also on Amazon or see if your library will order it for you. I am not in the "book selling" business, we wrote this to give parents a very affordable guide from all of our team (peds GI, dietitian, OT, ST, psychology) to help parents negotiate that wild and twisting road that is "Feeding Aversion." I did not get the help I needed for my Luke until he was 6 years old. My job, while God lets me live on this earth, is to stop that from happening to other children and their parents.
Hope this helps!
Sunday, July 26, 2009
Fall Courses
Feeding Therapy for Infants & Children: What to Do & How, When & Why To Do It!
Cheri Fraker, MS, CCC/SLP-L, CLC & Laura Walbert, MS, CCC/SLP-L, CLC
Two Dates:
Kansas City, MO - September 11 & 12, 2009 -
Dallas, Texas - October 16 & 17, 2009
Food Chaining: A Multidisciplinary Approach to Treating Feeding Aversion
Cheri Fraker, MS, CCC/SLP-L, CLC; & Laura Walbert, MS, CCC/SLP-L, CLC and Sibyl Cox, RD, LD, CLC
September 25 & 26, 2009 - Vanderbilt University - Nashville, TN
We will also be in beautiful San Antonio, Texas January 29 and 30th. More details soon!
Cheri Fraker, MS, CCC/SLP-L, CLC & Laura Walbert, MS, CCC/SLP-L, CLC
Two Dates:
Kansas City, MO - September 11 & 12, 2009 -
Dallas, Texas - October 16 & 17, 2009
Food Chaining: A Multidisciplinary Approach to Treating Feeding Aversion
Cheri Fraker, MS, CCC/SLP-L, CLC; & Laura Walbert, MS, CCC/SLP-L, CLC and Sibyl Cox, RD, LD, CLC
September 25 & 26, 2009 - Vanderbilt University - Nashville, TN
We will also be in beautiful San Antonio, Texas January 29 and 30th. More details soon!
Saturday, July 11, 2009
Food Clusters
Hi. I wanted to share a technique I have used for years now, especially good with older kids. Food Clusters can be used in treatment. If you have a patient who has eaten only a few foods for many years it can be very challenging knowing how to start and teach a child about food. Eliot ate peanut butter and bread from age 18 m to 11 years, my latest patient has eaten primarily pasta noodles/one type of bread for years. So what can you do?
Well, say you have bread to work with. It is easier to expand this food as it isn't of a complex texture like fruit, vegetables and meats. So I did some clusters. My patient wanted to learn to eat pizza so socially that was very important. Thick crust pizza or breadsticks were in a similar cluster to his preferred hot bread. Aunt Annie's pretzels can be eaten out socially when a kid is at the mall with friends and is another cluster. Panera Bread bagels can also be targeted, biscuits at numerous fast food restaurants can be targeted and now, not only are you expanding breads, but you are expanding the places a child can go and eat with family and friends. Imagine how slow and how labor intensive it would be to only tackle one food at a time. Potato products...if you have French fries, yippee! Tackle fries at numerous restaurants and work in therapy or at home comparing potato chips, shoestring potato sticks, French fries, Tator Tots, potato wedges and baked potato, mashed potato or even scalloped or twice baked potatoes. Cook only a few on a baking stone, break them open, talk about how they all come from potatoes. If you can add Tator Tots from Sonic, potato wedges from Hardees and McDonald's Hash Browns you also have places a child can go socially and be successful. You have clustered a food group and you chain quickly this way.
Try this and see what happens. It is also a great way to desensitize to new tastes and reduce anxiety from a new food. Again, you are not pushing the child to eat, just tiny tastes or exploring with the senses in a fun way. This should not be scary or hard. If it is too much, you are pushing too hard. Keep that comfort zone. Make this exploration and make it fun.
Happy Chaining Everyone!!
Well, say you have bread to work with. It is easier to expand this food as it isn't of a complex texture like fruit, vegetables and meats. So I did some clusters. My patient wanted to learn to eat pizza so socially that was very important. Thick crust pizza or breadsticks were in a similar cluster to his preferred hot bread. Aunt Annie's pretzels can be eaten out socially when a kid is at the mall with friends and is another cluster. Panera Bread bagels can also be targeted, biscuits at numerous fast food restaurants can be targeted and now, not only are you expanding breads, but you are expanding the places a child can go and eat with family and friends. Imagine how slow and how labor intensive it would be to only tackle one food at a time. Potato products...if you have French fries, yippee! Tackle fries at numerous restaurants and work in therapy or at home comparing potato chips, shoestring potato sticks, French fries, Tator Tots, potato wedges and baked potato, mashed potato or even scalloped or twice baked potatoes. Cook only a few on a baking stone, break them open, talk about how they all come from potatoes. If you can add Tator Tots from Sonic, potato wedges from Hardees and McDonald's Hash Browns you also have places a child can go socially and be successful. You have clustered a food group and you chain quickly this way.
Try this and see what happens. It is also a great way to desensitize to new tastes and reduce anxiety from a new food. Again, you are not pushing the child to eat, just tiny tastes or exploring with the senses in a fun way. This should not be scary or hard. If it is too much, you are pushing too hard. Keep that comfort zone. Make this exploration and make it fun.
Happy Chaining Everyone!!
Thursday, July 2, 2009
Food Chaining for Older Children....Magic Moments
This week I am working with an older child from out of state. We are doing an intensive program. Now, this is after treating him by telemed for a year and working with a great OT locally. This work we do is very challenging but there are moments when I absolutely love my job. Magic Moments when you connect with a child and what you do as a therapist is truly spiritual. The trust, the bond with a family is there and then the good stuff happens. When I met them in the waiting area, I said, "Are you scared?" all serious and then laughed. The tension started to reduce. We had laughter and we had tears yesterday.
He was such a hero yesterday. He tried so many new things and I mean bites here..I didn't push it, I suggested it a couple times because we were in an intensive program, but he did this for us, he did this for himself. He went above and beyond. I WAS nervous though, what if I blew it for them? I prayed a lot and turned it over. I went to the store with a basically no agenda and went on instinct to select a variety of foods that he had some type of flavor or texture connection with and I focused heavily on the ideas of social eating and nutritional rehab.
Yesterday we did Coke float with carnation instant breakfast mixed with the ice cream. I put too much CIB in it at first, but I wanted to start strong and keep modifying it to back off. This was done to add much needed calories. He loves Coke. So he had his Coke and the high cal version and alternated sips back and forth. We did his waffles at breakfast but also explored some other foods like PoppyCock caramel corn. We are working on regular syrup vs lite syrup as we need the calories, but too sweet is hard for him. He only eats a few foods (primarily pasta plain, popcorn, hot bread). The popcorn had the syrup type flavor, so we explored it. I had a biscuit from Mc D's that his mom brought in so we could explore another bread and also one you can eat at a restaurant, remember making the social and functional side of this a primary goal. I then had one more food to learn about (NOT TO EAT this food as his breakfast). It was hostess Dunkin Stix. A doughnut with a sweet syrupy flavor family and a bread, but novel to him.
We just talked and had a regular meal. The family commented on this, how our sessions did not feel like "work" and as I always do that and am not really aware of it, that was quite illuminating for me. Because of that style of treatment, there were "breaks" for him as we just talked and told stories. Isn't that how meals are with your friends and family? I kept letting him eat his normal breakfast like it was no big deal and then we took time to learn about food. Now, think about this my friends, using a food that a child feels comfortable in sessions or at home, keeps eating normal and safe and isn't that we all want. You have a model to build on. And would you want to try to learn to eat 5 new things at once (think oysters on the half shell, sushi, frog legs, kiwi and lobster all at the same meal)? No, you need that regular pattern, that motor plan that is familiar of eating what you know to refer to as you learn to eat something new. It also takes some of the huge amount of pressure off.
Some people would ask me how many times would you introduce these foods. I am asked this all the time. No numbers live in my head, I don't think that way. Just go to the store and pick up one of these foods another time. I bought Cracker Jacks after our session to keep expanding and showing him that foods may be the same, but taste different by brand and type. I sent the PoppyCock home with him and told him to explore it on his own or put some in with his regular popcorn or pretzels that he loves and go back and forth between the two.
So by the end of our day with the three sessions, he tried the following: Dunkin Stix, Poppycock, McDonald's biscuit (all rated a two or two plus on the 1-5 chaining rating scale), cashew, snack mix, chocolate sauce, breadsticks at Pizza Hut and cheese pizza (he liked the sauce and breadsticks and crusts. He ate 3 breadsticks! I rated it as a 4). He would do better without so much seasoning on his breadsticks. Praise the Lord. I did not have to push him. I just gave him a thumbs up in the middle of the meal and I ate my pizza. We all had a meal just like anyone else in the restaurant. I told him now he has another place he can eat with his friends or if someone has a party, he is almost there. He will be able to eat breadsticks, part of a cheese pizza and have a Coke. He also likes baked potatoes so we are great at many restaurants, if we can get him a baked potato and bread, then we can keep targeting one more food to add to a meal he can get through and enjoy.
I am so proud of him, there are no words. What a brave young man! If you don't do this, you don't know how hard it is. I hate it when these kids are mismanaged, this is my mission in life ("I am on a mission from God"as the Blues Brothers would say) to help those children who, like my new dear friend, and like little Z are off track. Food is joyous and fellowship is part of it. Make your treatments fun, take the pressure off, set the child up for success. Be functional in your approach. Use common sense and build success. Each success leads to more success. Now when he gets home, everyone needs to chill and not push it. Just let it unfold. He will get there. But if he feels the expectation is too high, the bar is too out of reach, he won't make it. So I am going to be there via Tok Box video emails and video chat to remain his cheerleader. But by having the whole family there, everyone sees how it should be and I think the potential is unlimited.
So what else have I selected for today and tomorrow? I am trying to work on Carnation in yogurt and hopefully ice cream or shakes. Wouldn't that be cool? Sonic has floats and he has a Sonic at home. Another place to go with friends. Calories too! I bought Edy's 100% fruit bars to work on fruit. I am going to try to take that and make it a ice based fruit smoothie, hopefully a yogurt based smoothie soon. I am introducing chocolate in dipping sauce at Pizza Hut and in M and M's and hopefully it will become a chocolate fondue or a chocolate birthday cake (if it does, I will cry!). I am introducing a variety of snack mix foods so he can carry and eat something on an airplane. THERE IS NO SUCH THING AS JUNK FOOD! These are important textures of food and tastes to explore. It is something he can put in his lunch as school. Nuts are a great protein for me to add to his diet. Exploring variety is therapy. I also took the bright white spotlight off him at meals. He needs to just get out there and eat. We are going to Chili's (his sister's favorite restaurant) and I can explore salsa (a veggie) and find one more thing to try. We are starting our day at Bob Evans to target pancakes, waffles without his brand x. He can go home and eat more of his regular food after the session if needed. We are just going to explore the world of food, the store, the mall and see what happens. Food Courts are great my friends. Explore them. It is important to eat and have a sense of community and social norm.
So no Bubba Gump food chains, my therapist friends, don't do this! Don't make food an assignment. We tease one therapist about her chains until we helped her (peach, peach slice, mashed peach, baked peach, peach pie, peach on a stick...zzzzzz) I am introducing a wide range this week and seeing where we can find successes for him. I do not do the same thing for every child. My programs are snowflakes, individualized to each child who passes through our doors. I also worked to try to lift the enormous burden of stress that this family feels about intake, growth, nutrition needs and how to make this better. Joy at meals has been stolen from them. I want it to come back. Keep us in your thoughts and prayers.
He was such a hero yesterday. He tried so many new things and I mean bites here..I didn't push it, I suggested it a couple times because we were in an intensive program, but he did this for us, he did this for himself. He went above and beyond. I WAS nervous though, what if I blew it for them? I prayed a lot and turned it over. I went to the store with a basically no agenda and went on instinct to select a variety of foods that he had some type of flavor or texture connection with and I focused heavily on the ideas of social eating and nutritional rehab.
Yesterday we did Coke float with carnation instant breakfast mixed with the ice cream. I put too much CIB in it at first, but I wanted to start strong and keep modifying it to back off. This was done to add much needed calories. He loves Coke. So he had his Coke and the high cal version and alternated sips back and forth. We did his waffles at breakfast but also explored some other foods like PoppyCock caramel corn. We are working on regular syrup vs lite syrup as we need the calories, but too sweet is hard for him. He only eats a few foods (primarily pasta plain, popcorn, hot bread). The popcorn had the syrup type flavor, so we explored it. I had a biscuit from Mc D's that his mom brought in so we could explore another bread and also one you can eat at a restaurant, remember making the social and functional side of this a primary goal. I then had one more food to learn about (NOT TO EAT this food as his breakfast). It was hostess Dunkin Stix. A doughnut with a sweet syrupy flavor family and a bread, but novel to him.
We just talked and had a regular meal. The family commented on this, how our sessions did not feel like "work" and as I always do that and am not really aware of it, that was quite illuminating for me. Because of that style of treatment, there were "breaks" for him as we just talked and told stories. Isn't that how meals are with your friends and family? I kept letting him eat his normal breakfast like it was no big deal and then we took time to learn about food. Now, think about this my friends, using a food that a child feels comfortable in sessions or at home, keeps eating normal and safe and isn't that we all want. You have a model to build on. And would you want to try to learn to eat 5 new things at once (think oysters on the half shell, sushi, frog legs, kiwi and lobster all at the same meal)? No, you need that regular pattern, that motor plan that is familiar of eating what you know to refer to as you learn to eat something new. It also takes some of the huge amount of pressure off.
Some people would ask me how many times would you introduce these foods. I am asked this all the time. No numbers live in my head, I don't think that way. Just go to the store and pick up one of these foods another time. I bought Cracker Jacks after our session to keep expanding and showing him that foods may be the same, but taste different by brand and type. I sent the PoppyCock home with him and told him to explore it on his own or put some in with his regular popcorn or pretzels that he loves and go back and forth between the two.
So by the end of our day with the three sessions, he tried the following: Dunkin Stix, Poppycock, McDonald's biscuit (all rated a two or two plus on the 1-5 chaining rating scale), cashew, snack mix, chocolate sauce, breadsticks at Pizza Hut and cheese pizza (he liked the sauce and breadsticks and crusts. He ate 3 breadsticks! I rated it as a 4). He would do better without so much seasoning on his breadsticks. Praise the Lord. I did not have to push him. I just gave him a thumbs up in the middle of the meal and I ate my pizza. We all had a meal just like anyone else in the restaurant. I told him now he has another place he can eat with his friends or if someone has a party, he is almost there. He will be able to eat breadsticks, part of a cheese pizza and have a Coke. He also likes baked potatoes so we are great at many restaurants, if we can get him a baked potato and bread, then we can keep targeting one more food to add to a meal he can get through and enjoy.
I am so proud of him, there are no words. What a brave young man! If you don't do this, you don't know how hard it is. I hate it when these kids are mismanaged, this is my mission in life ("I am on a mission from God"as the Blues Brothers would say) to help those children who, like my new dear friend, and like little Z are off track. Food is joyous and fellowship is part of it. Make your treatments fun, take the pressure off, set the child up for success. Be functional in your approach. Use common sense and build success. Each success leads to more success. Now when he gets home, everyone needs to chill and not push it. Just let it unfold. He will get there. But if he feels the expectation is too high, the bar is too out of reach, he won't make it. So I am going to be there via Tok Box video emails and video chat to remain his cheerleader. But by having the whole family there, everyone sees how it should be and I think the potential is unlimited.
So what else have I selected for today and tomorrow? I am trying to work on Carnation in yogurt and hopefully ice cream or shakes. Wouldn't that be cool? Sonic has floats and he has a Sonic at home. Another place to go with friends. Calories too! I bought Edy's 100% fruit bars to work on fruit. I am going to try to take that and make it a ice based fruit smoothie, hopefully a yogurt based smoothie soon. I am introducing chocolate in dipping sauce at Pizza Hut and in M and M's and hopefully it will become a chocolate fondue or a chocolate birthday cake (if it does, I will cry!). I am introducing a variety of snack mix foods so he can carry and eat something on an airplane. THERE IS NO SUCH THING AS JUNK FOOD! These are important textures of food and tastes to explore. It is something he can put in his lunch as school. Nuts are a great protein for me to add to his diet. Exploring variety is therapy. I also took the bright white spotlight off him at meals. He needs to just get out there and eat. We are going to Chili's (his sister's favorite restaurant) and I can explore salsa (a veggie) and find one more thing to try. We are starting our day at Bob Evans to target pancakes, waffles without his brand x. He can go home and eat more of his regular food after the session if needed. We are just going to explore the world of food, the store, the mall and see what happens. Food Courts are great my friends. Explore them. It is important to eat and have a sense of community and social norm.
So no Bubba Gump food chains, my therapist friends, don't do this! Don't make food an assignment. We tease one therapist about her chains until we helped her (peach, peach slice, mashed peach, baked peach, peach pie, peach on a stick...zzzzzz) I am introducing a wide range this week and seeing where we can find successes for him. I do not do the same thing for every child. My programs are snowflakes, individualized to each child who passes through our doors. I also worked to try to lift the enormous burden of stress that this family feels about intake, growth, nutrition needs and how to make this better. Joy at meals has been stolen from them. I want it to come back. Keep us in your thoughts and prayers.
Getting Started with Food Chaining: "Z" Continues to Make Gains
UPDATE: Taja and I talked more about Z's eating and I explored his daily intake. Liquid intake of the caloric supplement and other liquids is still quite high. We reduced it gradually, still giving him his drink but with less in the cup. This should give him a gentle sense of appetite stimulation. The GI wanted to use Periactin, however, without looking at the liquid intake, that would have been a mistake. Z's little belly is full of liquid and like a gas tank, when he is full there is no need to eat. I also want to clone Z's new therapist! She is doing a great job.
TAJA: How are you? Today has been a big day for Z. First of all the GI finally got back to me and told me that the biopsy is normal! So I guess that rules out medical reasons except for the reflux. She also told me that the the University of ___ GI team does not feel that the facility we discussed has an approach that is good. They feel that Food chaining is a much better method and told my GI that they have known several success cases by using this approach. Go Food Chaining!!! She told me that she is willing to write a script for Z if we decide to go to the Koke Mill Clinic. I called today and was told that your psychologist would call us next week.
As for Z's eating.We have added an additional occupational therapy session, so Z is going 3 times a week now. Twice with the therapist that he has been seeing and now with another therapist who worked with our daughter, A, when she was a baby. Today was the first day with the new therapist. It was a great session, for one thing is made it very fun. I remembered what you said about that there should be no gagging, or vomiting in any session and I guess that by making it fun you can alleviate the anxiety that can cause these reactions. She first she had Z play in the ball pit and go down the slide a couple of times. I am guessing that this was for sensory warm-ups. Then she brought out some stuff that looked like play-doh, but was more gooey. Z played with it no problem. Then she brought out a box full of different spoons. A and Z picked one. Then she had them play kiss the spoon, counting their teeth with the spoon etc. This brought on a lot of laughs. I am believe that she was doing oral stimulation, but Z was doing it to himself, giving him total control. Then she brought out bowls and had him pour some Gerber puffs into a bowl. He loves Gerber puffs. Then she had every one eat one. Then she had him eat more and told him to make sure that he put it on the side. Z has an overactive gag reflex and will gag if the food is placed on the tongue even the front of the tongue. Then she had him open some baby food. Here is when I thought the gagging would start. Then she had him use his spoon and put some in his bowl. Then she had everyone dip their spoon in the baby food and just lick it off the spoon with their tongue. Z just took some quick pokes of his tongue to the spoon, but no gagging at all. I was so amazed. They keep on laughing and making it playful.He did ask her are we were going to do this a lot and she said no. Then he asked how many times and she said 5 times. So they took turns licking the spoon and counting. The therapist was so amazed by A, because the last time she saw her, A refused everything. Now she was licking the spoon mixing the puffs and baby food and taking it no problem. Goes to show that feeding disorder can be overcome, with therapy and time. Next the therapist had everyone dip their finger in the baby food and lick it off their finger. Z at first still wanted to use the spoon and then she said just try your finger. So he did, he only make faces when he licked it like it was bitter. Overall I couldn't believe it.
Later that day the therapist called me and said that she wanted to try to make a plan to transition the eating to home. She told me to bring an apple and toast to the next session. She also went through exactly what Z would eat with me. I told her that Z likes foods that tend to be orange or yellow. She said that they would try some carrots. I mentioned how he would say that he wants carrots and how I gave him canned carrots and you had said that raw ones were better and she said yes. Just like you she said that we should buy carrots and just have him play with them hold them or touch his teeth with them, not to even think about him eating them right now just playing with them. She also suggested that we make french fries at home. Let Z watch how we cut them and season them and bake them and see if he would eat them. So my husband did this today he said that he cut them and Z kept on saying that isn't french fries that is a potato. So my husband told him yes the potato is mom and the french fries are her babies. But Z started to have a fit over it and didn't want to look at them so my husband started to throw them and make a game of catch the fries and Z loved the game.So he didn't eat them, but at least he touched them. Now that Z eats Tator tots and hash browns what should we chain next? I tried steak fries, but he saw the potato skin and said it was dirty and refused to eat them. So he didn't eat them.
Also I thought that I would mention how I think that Z is very sensitive to the smell of food. I notice that some days he won't sit at the dinner table with us, because he says that the food we are eating smells.
Well here is another long update, but I had a a lot to share:)
Hope all is well with you,
Thanks
Taja
CHERI:Taja
That is great news. I think your therapist sounds wonderful. We can hold off having you come see us for now if you want. If you need us we can be there for you. Just think it over. Cheryl can go ahead and call you and do the intake though. Why don't we see how this goes for a few more sessions and then have you come if needed. I don't know if I want to interrupt this process.
I would also suggest having the therapist explore pureed "real" food using the Magic Bullet instead of baby food. That can be fun and very educational about food like real fruit and veggies. The kids like to push down on the Magic Bullet and see food mixed. I have done watermelon and strawberry slushies (strawberry-real strawberries 1 or 2 of them, ice, strawberry ice cream topping and process for a few seconds, add decorative straws, etc). Yogurt, ice cream or ice based drinks...lots of fun. Laura put a chicken nugget in the Magic Bullet and she had a dry type crumble that the kids ate as crumbs on their fingers. They laughed and laughed about what happened to the chicken nugget and soon the child was eating regular ones. (Note: these flakes can also be added to gravy, mashed potato or pasta sauce-think Chicken Parmesan in your mind- to introduce meat flake to food)
I am ok, been a rough week. So impressed with what you are doing. I am so happy to hear that someone knows about us in your area. I wish more people knew and understood Food Chaining. The time will come I hope. When people do it wrong it does not work. When done right, it can turn things around so quickly.
TAJA: How are you? Today has been a big day for Z. First of all the GI finally got back to me and told me that the biopsy is normal! So I guess that rules out medical reasons except for the reflux. She also told me that the the University of ___ GI team does not feel that the facility we discussed has an approach that is good. They feel that Food chaining is a much better method and told my GI that they have known several success cases by using this approach. Go Food Chaining!!! She told me that she is willing to write a script for Z if we decide to go to the Koke Mill Clinic. I called today and was told that your psychologist would call us next week.
As for Z's eating.We have added an additional occupational therapy session, so Z is going 3 times a week now. Twice with the therapist that he has been seeing and now with another therapist who worked with our daughter, A, when she was a baby. Today was the first day with the new therapist. It was a great session, for one thing is made it very fun. I remembered what you said about that there should be no gagging, or vomiting in any session and I guess that by making it fun you can alleviate the anxiety that can cause these reactions. She first she had Z play in the ball pit and go down the slide a couple of times. I am guessing that this was for sensory warm-ups. Then she brought out some stuff that looked like play-doh, but was more gooey. Z played with it no problem. Then she brought out a box full of different spoons. A and Z picked one. Then she had them play kiss the spoon, counting their teeth with the spoon etc. This brought on a lot of laughs. I am believe that she was doing oral stimulation, but Z was doing it to himself, giving him total control. Then she brought out bowls and had him pour some Gerber puffs into a bowl. He loves Gerber puffs. Then she had every one eat one. Then she had him eat more and told him to make sure that he put it on the side. Z has an overactive gag reflex and will gag if the food is placed on the tongue even the front of the tongue. Then she had him open some baby food. Here is when I thought the gagging would start. Then she had him use his spoon and put some in his bowl. Then she had everyone dip their spoon in the baby food and just lick it off the spoon with their tongue. Z just took some quick pokes of his tongue to the spoon, but no gagging at all. I was so amazed. They keep on laughing and making it playful.He did ask her are we were going to do this a lot and she said no. Then he asked how many times and she said 5 times. So they took turns licking the spoon and counting. The therapist was so amazed by A, because the last time she saw her, A refused everything. Now she was licking the spoon mixing the puffs and baby food and taking it no problem. Goes to show that feeding disorder can be overcome, with therapy and time. Next the therapist had everyone dip their finger in the baby food and lick it off their finger. Z at first still wanted to use the spoon and then she said just try your finger. So he did, he only make faces when he licked it like it was bitter. Overall I couldn't believe it.
Later that day the therapist called me and said that she wanted to try to make a plan to transition the eating to home. She told me to bring an apple and toast to the next session. She also went through exactly what Z would eat with me. I told her that Z likes foods that tend to be orange or yellow. She said that they would try some carrots. I mentioned how he would say that he wants carrots and how I gave him canned carrots and you had said that raw ones were better and she said yes. Just like you she said that we should buy carrots and just have him play with them hold them or touch his teeth with them, not to even think about him eating them right now just playing with them. She also suggested that we make french fries at home. Let Z watch how we cut them and season them and bake them and see if he would eat them. So my husband did this today he said that he cut them and Z kept on saying that isn't french fries that is a potato. So my husband told him yes the potato is mom and the french fries are her babies. But Z started to have a fit over it and didn't want to look at them so my husband started to throw them and make a game of catch the fries and Z loved the game.So he didn't eat them, but at least he touched them. Now that Z eats Tator tots and hash browns what should we chain next? I tried steak fries, but he saw the potato skin and said it was dirty and refused to eat them. So he didn't eat them.
Also I thought that I would mention how I think that Z is very sensitive to the smell of food. I notice that some days he won't sit at the dinner table with us, because he says that the food we are eating smells.
Well here is another long update, but I had a a lot to share:)
Hope all is well with you,
Thanks
Taja
CHERI:Taja
That is great news. I think your therapist sounds wonderful. We can hold off having you come see us for now if you want. If you need us we can be there for you. Just think it over. Cheryl can go ahead and call you and do the intake though. Why don't we see how this goes for a few more sessions and then have you come if needed. I don't know if I want to interrupt this process.
I would also suggest having the therapist explore pureed "real" food using the Magic Bullet instead of baby food. That can be fun and very educational about food like real fruit and veggies. The kids like to push down on the Magic Bullet and see food mixed. I have done watermelon and strawberry slushies (strawberry-real strawberries 1 or 2 of them, ice, strawberry ice cream topping and process for a few seconds, add decorative straws, etc). Yogurt, ice cream or ice based drinks...lots of fun. Laura put a chicken nugget in the Magic Bullet and she had a dry type crumble that the kids ate as crumbs on their fingers. They laughed and laughed about what happened to the chicken nugget and soon the child was eating regular ones. (Note: these flakes can also be added to gravy, mashed potato or pasta sauce-think Chicken Parmesan in your mind- to introduce meat flake to food)
I am ok, been a rough week. So impressed with what you are doing. I am so happy to hear that someone knows about us in your area. I wish more people knew and understood Food Chaining. The time will come I hope. When people do it wrong it does not work. When done right, it can turn things around so quickly.
Saturday, May 30, 2009
More Food Chaining Ideas for Z
TAJA: Hi Cheri, Sorry it has taken me so long to respond, we were on a short trip to Disney these past few days:) I totally understand how that mom felt. It is very sad and frustrating when most of the medical world doesn't understand what a feeding disorder is. You feel very alone. I am so glad that I contacted you. I think that you are one of the few therapists that specializes in feeding disorders. I think that is great, because from what I understand treating a child with a feeding disorder is most dfficult problem that a Speech therapist has to deal with.
As for Z he is pretty much the same food wise. It is hard to get him to drink all the miralax, it is a real guessing game to know if he will drink the full 4oz. This is a problem, because he gets constipated without it. Like on our trip to Disney he was constipated the whole time and we were giving him juice and water etc. Plus, trying to get him to take the Miralax everyday. He was able to go on the day we returned home, and has been going fine everyday since. You mentioned that we can't put it in milk right, so I am assuming that we can't put it in the pediasure either? On a positive note he went to therapy today and ate cake and some whip cream. He is starting to become more accepting, so we are happy and still keeping our fingers crossed that this continues. Also, I had a question. I was reading your book on the different foods to chain, but I was wondering. How often or how many times should we try the new food? For example I place Captain Chrunch cereal on his plate every morning, but he never touches it. Should I be switching it with other cereals, or still continue with the same one? Thanks again
CHERI:
Hi Taja. Disney is my favorite place on earth. I hope you had a great time. I don't know why, but I just "get" this about kids, maybe because I have sensory processing disorder myself and therefore, I am extremely empathetic to people. I think many times the child is not understood or their feelings respected, it is just forced upon them and they become more guarded as a result. Or if you don't understand how it feels, it is very hard to treat. I have foods that if I touch them it literally gives me physical pain. I feel like you are scraping all your nails down the biggest blackboard on the planet. It feels like being shocked up your spinal cord, especially at the base of my neck. I have foods that the after-taste completely makes me want to stop eating. Fruit is always tricky and there are many times (though I love it taste wise) I can't eat all of it. See my post about Peaches.
As for offering new food, I have no rules in my head whatsoever about number of times, etc. Don't you love it when I say things like that? It is observation, intuition and focusing more on the experience of learning than it is about getting him to eat. Eat is the final step. Every child I treat is different. I shape a program around the child not the other way around.
So what do we do? We used to have a big "cat in the hat" hat and I would put the food items under it and whip the hat off, voila' or we would race to the table to see who could take the hat off first. With food like cereals, I just put stuff out there. Sometimes with cereal we crush it with our toy cars or fingers (Marsha Dunn Klein's crumbing program) -we crush in or out of little baggies and you taste little crumbs or mix them all together in a pile of crumbs and look for the orange ones, etc. I have used chopsticks as tasting sticks or a curly straw as a tasting stick. Or I put a variety of different cereals out (1 of each) and roll the Cheerios or stack the Cheerios on the Apple Jax. Or I put pieces on the chopstick and then crunch into them. Anything to make it fun, so the anxiety stays low. With Pringles I make duck bills and put them in my mouth and quack and when we are all done we play the game Lucky Ducks or something where I can pull all types of language and learning into the sessions. When I do new flavors of chips, for example, I put one new flavored Pringle between two regular. I think the kids trust me so much, I rarely have to formally "chain" for very long, though I continually assess and analyze what they like to eat. They just try it, usually I am saying "I can touch this one" or "I can crunch this food really, really loud" and I am doing it and they already have picked it up and eaten it. We always have a food to eat that is either a core food or an accepted food but not eaten enough to be a true core food and maybe something completely new to cook or learn about. Our sessions are mini meals, not all play. But we enjoy ourselves with food every time. Sometimes I bring foods into the meals so there they are offered more frequently. LIke the mom says, they will eat deli meat but it isn't offered very often. I bring it into sessions so they child becomes really comfortable with it and the diet expands. It can be placed in the lunch box, etc. This also helps desensitize, because you have added variety. (See Cheri's Fun Version of Feeding Therapy in the archive-for more ideas on Deli Meat and core foods such as Frito Scoops)
The cake and whipped cream is awesome. He can decorate other types of cakes or put "snow" on fruits with whipped cream, most kids LOVE spraying Reddi-Whip out of a can! If we get to fruit breads, muffins, etc that is a great way to draw fruits into the diet. Or pureed strawberries (just a few) and add to the Cool Whip to make it pink, blueberries for blue...do you see how you can keep going? I finger paint with pureed fruits too. You only need a little bit too, so as not to waste food or money. I make ice cubes of pureed fruit and just pop on out. Marsha D sells these great little ice cube trays of hearts, characters, cars, etc and that is fun to put in drinks or to make popsicles, etc.
As for the big C, Miralax is most effective in clear liquids, not supposed to be mixed with milk products, that being said, I would talk to the doctor's office about it. Some MD's use Milk of Magnesia (can be added to milk products) but Miralax is best. It is not a stimulant and just "pulls water" so to speak, into to the tract. He also sounds to me like he is withholding a bit. Probably because it is hard for him to go. Constipation really impacts eating. It is a big challenge. Keep track of the time of day when he does go successfully. The body is supposed to have a rhythm to it, try to put him on the potty at that time. There are a lot of books and suggestions about toileting programs to help with withholding. Poor little guy. This is an issue to try to resolve because it is a roadblock to progress.
Thanks Taja...I hope this helps!
As for Z he is pretty much the same food wise. It is hard to get him to drink all the miralax, it is a real guessing game to know if he will drink the full 4oz. This is a problem, because he gets constipated without it. Like on our trip to Disney he was constipated the whole time and we were giving him juice and water etc. Plus, trying to get him to take the Miralax everyday. He was able to go on the day we returned home, and has been going fine everyday since. You mentioned that we can't put it in milk right, so I am assuming that we can't put it in the pediasure either? On a positive note he went to therapy today and ate cake and some whip cream. He is starting to become more accepting, so we are happy and still keeping our fingers crossed that this continues. Also, I had a question. I was reading your book on the different foods to chain, but I was wondering. How often or how many times should we try the new food? For example I place Captain Chrunch cereal on his plate every morning, but he never touches it. Should I be switching it with other cereals, or still continue with the same one? Thanks again
CHERI:
Hi Taja. Disney is my favorite place on earth. I hope you had a great time. I don't know why, but I just "get" this about kids, maybe because I have sensory processing disorder myself and therefore, I am extremely empathetic to people. I think many times the child is not understood or their feelings respected, it is just forced upon them and they become more guarded as a result. Or if you don't understand how it feels, it is very hard to treat. I have foods that if I touch them it literally gives me physical pain. I feel like you are scraping all your nails down the biggest blackboard on the planet. It feels like being shocked up your spinal cord, especially at the base of my neck. I have foods that the after-taste completely makes me want to stop eating. Fruit is always tricky and there are many times (though I love it taste wise) I can't eat all of it. See my post about Peaches.
As for offering new food, I have no rules in my head whatsoever about number of times, etc. Don't you love it when I say things like that? It is observation, intuition and focusing more on the experience of learning than it is about getting him to eat. Eat is the final step. Every child I treat is different. I shape a program around the child not the other way around.
So what do we do? We used to have a big "cat in the hat" hat and I would put the food items under it and whip the hat off, voila' or we would race to the table to see who could take the hat off first. With food like cereals, I just put stuff out there. Sometimes with cereal we crush it with our toy cars or fingers (Marsha Dunn Klein's crumbing program) -we crush in or out of little baggies and you taste little crumbs or mix them all together in a pile of crumbs and look for the orange ones, etc. I have used chopsticks as tasting sticks or a curly straw as a tasting stick. Or I put a variety of different cereals out (1 of each) and roll the Cheerios or stack the Cheerios on the Apple Jax. Or I put pieces on the chopstick and then crunch into them. Anything to make it fun, so the anxiety stays low. With Pringles I make duck bills and put them in my mouth and quack and when we are all done we play the game Lucky Ducks or something where I can pull all types of language and learning into the sessions. When I do new flavors of chips, for example, I put one new flavored Pringle between two regular. I think the kids trust me so much, I rarely have to formally "chain" for very long, though I continually assess and analyze what they like to eat. They just try it, usually I am saying "I can touch this one" or "I can crunch this food really, really loud" and I am doing it and they already have picked it up and eaten it. We always have a food to eat that is either a core food or an accepted food but not eaten enough to be a true core food and maybe something completely new to cook or learn about. Our sessions are mini meals, not all play. But we enjoy ourselves with food every time. Sometimes I bring foods into the meals so there they are offered more frequently. LIke the mom says, they will eat deli meat but it isn't offered very often. I bring it into sessions so they child becomes really comfortable with it and the diet expands. It can be placed in the lunch box, etc. This also helps desensitize, because you have added variety. (See Cheri's Fun Version of Feeding Therapy in the archive-for more ideas on Deli Meat and core foods such as Frito Scoops)
The cake and whipped cream is awesome. He can decorate other types of cakes or put "snow" on fruits with whipped cream, most kids LOVE spraying Reddi-Whip out of a can! If we get to fruit breads, muffins, etc that is a great way to draw fruits into the diet. Or pureed strawberries (just a few) and add to the Cool Whip to make it pink, blueberries for blue...do you see how you can keep going? I finger paint with pureed fruits too. You only need a little bit too, so as not to waste food or money. I make ice cubes of pureed fruit and just pop on out. Marsha D sells these great little ice cube trays of hearts, characters, cars, etc and that is fun to put in drinks or to make popsicles, etc.
As for the big C, Miralax is most effective in clear liquids, not supposed to be mixed with milk products, that being said, I would talk to the doctor's office about it. Some MD's use Milk of Magnesia (can be added to milk products) but Miralax is best. It is not a stimulant and just "pulls water" so to speak, into to the tract. He also sounds to me like he is withholding a bit. Probably because it is hard for him to go. Constipation really impacts eating. It is a big challenge. Keep track of the time of day when he does go successfully. The body is supposed to have a rhythm to it, try to put him on the potty at that time. There are a lot of books and suggestions about toileting programs to help with withholding. Poor little guy. This is an issue to try to resolve because it is a roadblock to progress.
Thanks Taja...I hope this helps!
Thursday, May 28, 2009
One Day Course June 6th Peoria, Illinois
Come see us for a one day course presented for Professional Therapy Services in Peoria, Illinois. Hope to see you there.
Contact:
Stacy Rassi
Continuing Education Coordinator
Professional Therapy Services, Inc.
(309) 674-7874
Contact:
Stacy Rassi
Continuing Education Coordinator
Professional Therapy Services, Inc.
(309) 674-7874
Tuesday, May 12, 2009
Laura and I are going to Athens, Greece to present August 2010
Our wonderful pediatric otolaryngologist, Sandra Ettema, MD, just asked Laura and I to go to Athens, Greece to present with her on pediatric dysphagia! How exciting! Details will be posted soon.
We are off to Spokane, Washington tomorrow to present a two day food chaining course. Then one more this spring in Peoria, Illinois...a one day course on Pre-Chaining and Food Chaining. I will post our fall courses soon. If you are going to the National Neonatal Conference in Minnesota, we will be speaking there on October 9th. Take care everyone!
We are off to Spokane, Washington tomorrow to present a two day food chaining course. Then one more this spring in Peoria, Illinois...a one day course on Pre-Chaining and Food Chaining. I will post our fall courses soon. If you are going to the National Neonatal Conference in Minnesota, we will be speaking there on October 9th. Take care everyone!
Monday, May 4, 2009
Update on "Z"...Using Food Chaining at Home
TAJA: Hi Cheri,Thanks for the encouragement:) Here is a little mini update, that I wanted to share with you. First of all, I just wanted to let you know that the divided tray, where you put foods there that a child won't eat, but just looks at,really does make a difference even if he won't try it. I had proof of that the other day. Every day ever since the therapist had Z__ try Captain Crunch cereal"orange squares" (and it took a lot of prompting), I have been putting some in one section of Z's divided tray. Every day, Z tells me that he doesn't want it, but he lets it stay there. So the other day the therapist puts out three foods; Captain crunch squares (She had no idea that I have been putting it out every day), a piece of banana bread and a piece of brownie. She told him that he needed to try one and she would let him pick. So he pointed to the Captain Crunch cereal, and he picked up the three pieces and ate them quickly, no crying, no hesitation. The therapist looked so surprised and I told her that I had been putting it out everyday. I put it out the next morning and he told me again that he didn't want it and wouldn't eat it, LOL, so maybe he really doesn't like it. But in any case this just proves to me that just having the food there to look at takes away some of the fear.
The second thing that I wanted to mention was that I tried to take away the focus of meals on Z. So today, I cooked chicken nuggets, and waffle fries for myself. I sat in front of Z to see what would happen. I started eating and Z looked at me and said "Mommy, I am hungry." I said "Do you want a waffle fry?" He nodded his head and took one. Now these are the same ones that he wouldn't eat on fry night. He ate one and then he took another one off my plate. He ate half of it and one part was a little over cooked so it was crispy. He said "Mommy, I can't eat this." I said" here try this part, he said "No let me try it again." He tried to bite it. Gave up and set it down. I gave him another one and told him that this one was soft. He bit it and said he didn't want anymore. In any case he ate the waffle fry without a fuss:)
I just wanted to share, thanks for all the advice. I am glad that you had fun in San Diego!
CHERI: Taja, I am pleased with Z's progress. Keep up the good work. Try to work on building stress-free meals with foods that Z can tolerate easily. Good meals lead to more good meals. He is moving beyond his limits and trying new things, this is a great sign. Now really focus on offering things very, very similar to what he already likes to eat (the food chains I suggested) and see if you can have a series of meals with foods presented and he just eats. It is great that you are not focusing too much attention on him. Z should not gag or cry in his therapy sessions either. He should have fun in all of his sessions and look forward to coming. Keep up the good work!
The second thing that I wanted to mention was that I tried to take away the focus of meals on Z. So today, I cooked chicken nuggets, and waffle fries for myself. I sat in front of Z to see what would happen. I started eating and Z looked at me and said "Mommy, I am hungry." I said "Do you want a waffle fry?" He nodded his head and took one. Now these are the same ones that he wouldn't eat on fry night. He ate one and then he took another one off my plate. He ate half of it and one part was a little over cooked so it was crispy. He said "Mommy, I can't eat this." I said" here try this part, he said "No let me try it again." He tried to bite it. Gave up and set it down. I gave him another one and told him that this one was soft. He bit it and said he didn't want anymore. In any case he ate the waffle fry without a fuss:)
I just wanted to share, thanks for all the advice. I am glad that you had fun in San Diego!
CHERI: Taja, I am pleased with Z's progress. Keep up the good work. Try to work on building stress-free meals with foods that Z can tolerate easily. Good meals lead to more good meals. He is moving beyond his limits and trying new things, this is a great sign. Now really focus on offering things very, very similar to what he already likes to eat (the food chains I suggested) and see if you can have a series of meals with foods presented and he just eats. It is great that you are not focusing too much attention on him. Z should not gag or cry in his therapy sessions either. He should have fun in all of his sessions and look forward to coming. Keep up the good work!
Saturday, April 25, 2009
More On How to Use Food Chaining At Home: An Update on Our Little "Z" Just getting started with Food Chaining
Hi All
Taja just sent me an update on how things are going with some of the suggestions I gave her in just a few emails back and forth. As you can see, she really applied what I suggested to her. Medically, Z now has a new GI and he will have an EGD, blood work, increase in reflux meds and start with constipation management via Miralax (FYI: which must be mixed in juice or water, not milk by the way). These are great interventions as all of these underlying issues can make children aversive and prevent progress in treatment. Here are excerpts from Taja's email. I loved what she had to say about her GI visit, because she followed everything and remembered that I do scheduled meals and snacks, no nibble trays as grazing dampens appetite and sets kids up to be able to say no to everything because they don't need to eat and are not hungry. I am so impressed with Taja. She listened to everything!!!! I would just like to see him do less directing mom what to do about taking food away or giving it back. I would like to see the food presented and he eats what he wants with less focus on him at meals, but I am very happy with his progress. Cheri
TAJA: "GI wants us to try this for 6 weeks to see if this helps and she is going to make sure that all possible medical reasons have been covered. She also suggest a nibble tray which she says to keep out with some of his favorite foods and always a new food. I guess this is what you would suggest also, but not all day just meals and snack time.
We did the fry night, like you suggested. I had his regular fries, tater tots and waffle fries. He ate a whole tater tot (Hooray), which I thought he would,because he likes Burger King hash browns, so we are going to start giving him them along with his fries. Then I gave him the waffle fry. He said "Mommy, I am scared." I told him that it was a fry just like the other fries. I said look it has holes, I can see you through them. Then I asked Amira, his sister if she wanted one. She said yes and she started to eat hers. I said wait Amiria we need to do the waffle fry dance and I made up some song and we sang it and wiggled around. Z then decided it's not so scary and took a bite of the waffle fry, said "I don't like it and put it back on his plate. I said that is o.k. and gave him a high five for trying it. I asked him if he wanted more tater tots or french fries, but he said he didn't want anymore.
I thought that he was still hungry and we were going to have spaghetti that night. So I made Z a divided tray of food, his normal food Cheetos puffs, quaker rice cakes and then in the other compartments; I put one string of spaghetti, cheese combos, since he likes pretzels and some bugles the last 3 are all new to him. First, thing he did was point to the spaghetti string and say" mommy. I don't like them". I said that's o.k. it is only to look at, not eat. He said "No, take it off." So I took it away. Then he pointed to the cheese combos, and said take them. I said but they are just like pretzels. Again "No take them away." Next came the bugles, same reaction, but I took them and put them on my finger and said look a hat. My mom was home with me and she said yeah just like a witch's hat. (Z likes the Wizard of OZ). Anyway, I took them away. Then he immediately asked for them. I want them he said. I gave him one and he put one on his finger and we laughed and said look you have a witch's finger. He smiled and put the bugle to his mouth,like he was going to eat it and took it away. He did this 2 times, before he took a bite, said "I don't like them" (Which surprised me, since it is salty and crunchy his favorite). Anyway I high fived for trying.
Earlier, that day my Mom was watching him and she told me that she took the Super market ads and looked through them with Z and ask him what he wanted to try. He pointed out orange sherbet ice cream, yogurt, and little mini muffins. So I stopped at the store and picked them up. Later that night. I brought out the boxes of mini muffins, I bought two different kinds. I said guess what? I have a surprise and I showed him the boxes. I saw a look of hesitation, but then Amira started jumping up and down shouting "muffins I want some!" and Z said I want some. I let him choose which kind and he picked the chocolate chip, Amira picked blueberry. I gave them each a bag. Z looked in the bag and took one out and started eating it. (We saw him once take a bite of a blueberry muffin at Sweet Tomato,but that never happened again.) So I was just thrilled to see him chomping away. I ran to tell my mom "Z is eating the muffin!" I went back to him and the muffin started to crumble in his hand. Z has a real problem with food that crumbles, when he was younger he would squeeze any food given to him and if it crumbled he refused to eat it. So he threw it down and said I don't want it. He then proceeded to look in the bag for another muffin. Two were stuck together,so he pull them away, but he didn't like the way they looked and threw them down. He looked in the bag and said happily"just one left" and pull that one out. Took a look and put it back in the bag and said "I don't want it." Anyway, he tried lots of new things that day, so that was progress. Sorry, that this e-mails so long. Just wanted to let you know what was going on.
Thanks so much,
Taja
Taja just sent me an update on how things are going with some of the suggestions I gave her in just a few emails back and forth. As you can see, she really applied what I suggested to her. Medically, Z now has a new GI and he will have an EGD, blood work, increase in reflux meds and start with constipation management via Miralax (FYI: which must be mixed in juice or water, not milk by the way). These are great interventions as all of these underlying issues can make children aversive and prevent progress in treatment. Here are excerpts from Taja's email. I loved what she had to say about her GI visit, because she followed everything and remembered that I do scheduled meals and snacks, no nibble trays as grazing dampens appetite and sets kids up to be able to say no to everything because they don't need to eat and are not hungry. I am so impressed with Taja. She listened to everything!!!! I would just like to see him do less directing mom what to do about taking food away or giving it back. I would like to see the food presented and he eats what he wants with less focus on him at meals, but I am very happy with his progress. Cheri
TAJA: "GI wants us to try this for 6 weeks to see if this helps and she is going to make sure that all possible medical reasons have been covered. She also suggest a nibble tray which she says to keep out with some of his favorite foods and always a new food. I guess this is what you would suggest also, but not all day just meals and snack time.
We did the fry night, like you suggested. I had his regular fries, tater tots and waffle fries. He ate a whole tater tot (Hooray), which I thought he would,because he likes Burger King hash browns, so we are going to start giving him them along with his fries. Then I gave him the waffle fry. He said "Mommy, I am scared." I told him that it was a fry just like the other fries. I said look it has holes, I can see you through them. Then I asked Amira, his sister if she wanted one. She said yes and she started to eat hers. I said wait Amiria we need to do the waffle fry dance and I made up some song and we sang it and wiggled around. Z then decided it's not so scary and took a bite of the waffle fry, said "I don't like it and put it back on his plate. I said that is o.k. and gave him a high five for trying it. I asked him if he wanted more tater tots or french fries, but he said he didn't want anymore.
I thought that he was still hungry and we were going to have spaghetti that night. So I made Z a divided tray of food, his normal food Cheetos puffs, quaker rice cakes and then in the other compartments; I put one string of spaghetti, cheese combos, since he likes pretzels and some bugles the last 3 are all new to him. First, thing he did was point to the spaghetti string and say" mommy. I don't like them". I said that's o.k. it is only to look at, not eat. He said "No, take it off." So I took it away. Then he pointed to the cheese combos, and said take them. I said but they are just like pretzels. Again "No take them away." Next came the bugles, same reaction, but I took them and put them on my finger and said look a hat. My mom was home with me and she said yeah just like a witch's hat. (Z likes the Wizard of OZ). Anyway, I took them away. Then he immediately asked for them. I want them he said. I gave him one and he put one on his finger and we laughed and said look you have a witch's finger. He smiled and put the bugle to his mouth,like he was going to eat it and took it away. He did this 2 times, before he took a bite, said "I don't like them" (Which surprised me, since it is salty and crunchy his favorite). Anyway I high fived for trying.
Earlier, that day my Mom was watching him and she told me that she took the Super market ads and looked through them with Z and ask him what he wanted to try. He pointed out orange sherbet ice cream, yogurt, and little mini muffins. So I stopped at the store and picked them up. Later that night. I brought out the boxes of mini muffins, I bought two different kinds. I said guess what? I have a surprise and I showed him the boxes. I saw a look of hesitation, but then Amira started jumping up and down shouting "muffins I want some!" and Z said I want some. I let him choose which kind and he picked the chocolate chip, Amira picked blueberry. I gave them each a bag. Z looked in the bag and took one out and started eating it. (We saw him once take a bite of a blueberry muffin at Sweet Tomato,but that never happened again.) So I was just thrilled to see him chomping away. I ran to tell my mom "Z is eating the muffin!" I went back to him and the muffin started to crumble in his hand. Z has a real problem with food that crumbles, when he was younger he would squeeze any food given to him and if it crumbled he refused to eat it. So he threw it down and said I don't want it. He then proceeded to look in the bag for another muffin. Two were stuck together,so he pull them away, but he didn't like the way they looked and threw them down. He looked in the bag and said happily"just one left" and pull that one out. Took a look and put it back in the bag and said "I don't want it." Anyway, he tried lots of new things that day, so that was progress. Sorry, that this e-mails so long. Just wanted to let you know what was going on.
Thanks so much,
Taja
Thursday, April 23, 2009
Case Study: "Z" How Do I as a Parent Get Started Trying Food Chaining Programs?
Hi All
Just had a lovely mom, Taja, write to me for information about Food Chaining, she wanted to know what we do and how we do it. She needed information to understand our approach vs other facilities in the US who work with feeding. I helped with the basics, rule out underlying disorders, questions about swallowing skills, setting up a schedule of three meals and two to three snacks, no grazing on liquid or nibbling on food all day as this dampens appetite, no force feeding, understanding toddler eating and portion sizes before we got started.
This little boy "Z" is coming to our clinic (217-862-0403) so I am getting his mom started in the right direction. We ended up writing back and forth and decided that this might be a great post to help others 'get it' when trying to actually do this and get started with this type of intervention. People make a lot of mistakes with chaining without guidance and that is why we do the blog and courses to try to supplement the book. This wonderful mom gave me permission to post, thank you so much for that. Anyone working in her area (she is from Florida)...I am looking for therapists who have attended a chaining course or are interested in learning and working with us....
Taja and I wrote back and forth for several days to help problem solve our way through expanding food. This is how I deal with my patients and shape their attempts, so they don't have to do this alone.
_______________
Taja: My name is Taja I have a 2 1/2 year old son with a feeding disorder.I hope you don't mind me writing to you,but I saw your blog and I am trying to gather info on different approaches to feeding disorders. My son has severe reflux and sensory integration dysfunction. He basically lives off of pediasure and will only eat french fries, chips, crackers,and a cinnamon roll from cinnabon ( but sometimes only a few bites). Currently, he is receiving occupational therapy using the S.O.S. approach, but we are not seeing any major improvements, we started speech therapy, but she was using the medical approach and we were not happy,so we stopped the sessions. We are looking into the Kennedy Krieger Institute, but I believe that their approach is more behavioral and doesn't really address the sensory issues. Is the multidisplinary team at koke mills any different from KKI? Any advice would be very appreciated?
Thank you for your time,
Taja
Cheri: Hi. We are extremely different from Kennedy Krieger and many other programs. We do not force a child or take away all the foods a child enjoys eating like some other programs recommend. We do not feel that is necessary to do that or that an approach like that respects the sensory system sufficiently. Imagine eating a food you cannot tolerate? Our goal is to build enjoyment of food and eating for life. We feel children eat the way they do for a real, valid reason. We build on what we consider success, in your case, the foods your child eats.
You can ask your library to order our food chaining book and in it, you hear from each of the professionals on our team (our OT is on maternity leave but another OT is with the team).
What I would want to know is:
Does your child have any chewing/biting swallowing issues?
Untreated reflux? It can be silent, any grimacing when swallowing or eating and suddenly stopping?
Constipation? Diarrhea?
Signs of food allergy?
Phobic reactions to new food?
I assume your therapists have checked this all out, but people miss things. Where are you from? We have people come from other countries, so distance is not an issue.
For your son, I would leave the Pediasure alone as my anchor food (unchanged food) to be his source of nutrition and minerals/vitamins. I would offer it with meals and snacks and not let him graze on it or drink it on and off all day. Some children with sensory issues drink to help self regulate their system. I would branch out to other flavors of chips and crackers and other types of fries (baked Ore Ida fast food fries, waffle, crinkles, crispy or foods like Smiles, Tator Tots or Tator crowns, Hash browns) . With chips, crackers and snacks, there are many of these products made from vegetables or have fruit flavor (Terra Chips, Veggie Stix, Pirate's Booty, Seneca apple chips). Just offering different flavors of chips exposes a child to tastes like cheddar, BBQ, sour cream and onion, salt and vinegar and later we can use those tastes to build to new foods. In time, your cinnamon rolls could become cinnamon roll pop tarts and then we could address other flavors of fruit by trying other types of PopTarts. It could be cinnamon bread, cinnamon toast, cinnamon in french toast or waffle pieces, later to pastries with fruit. Some kids like chocolate and you can do a chocolate fondue with little bites of fruit like banana, strawberry. Some kids like to sprinkle cinnamon sugar on fruit, then we fade the chocolate or sugar over a short period of time. Fruit can be fruit smoothies or shakes, Edy's all fruit popsicles, V-8 splash made into little popsicles, yogurt fruit smoothies, frozen GoGurts.....we would keep layering the chains until your son was branching out each of the food items more and more.
The biggest hurdle is not to push when you start. We only offer a bite or two on the plate. Step one is to learn about the food with the senses other than the mouth. If you push him to taste, you know what will happen, a big and resounding no. We let kids crumble a new food, maybe put a bit on the finger (some kids will go ahead and taste it)...just having new foods in front of you is progress. I always tell people to pretend food is not something to eat, pretend that it is a toy or something else to explore and have fun with. When the emphasis is off the mouth, things tend to improve.
If you are interested in a consult, feel free to have your doctor send you a script to us at 217-862-0440 attn: Michelle. Hope this helps a bit, I know how hard this can be. My work email is fraker.cheri@mhsil.com.
_________________
TAJA: The therapist that my son sees told me that she has taken the course in sensory integration therapy for children and she told me that not all therapist have. She tries to get my son to play with the food, break bread and touch liquids. Bbq sauce since he loves bbq chips and maple syrup because she is trying to get him to eat sweet things since m & m's and the cinnamon roll is the only sweet foods that he will eat.So she has him dip his finger in the sauce and she tries to persuade him into just putting his finger in his mouth, if he won't do that then she tells him to kiss it. He will somtimes do this but it takes a lot of persuading and recently she has been using gerber crunchies since he loves them as a reward. Is this a similar approach to what you would do? Interestingly enough he can play with finger paints (loves them), but if it is a food that he has to touch, he cries and has a meltdown. So he has a great fear of food. He is on medicine for reflux, he had an endosopy done and that was normal and he has been tested for food allgeries he has none. He can swallow and chew fine. He is just stuck on the limited foods that he eats. I asked Z's therapist if food chaining was the same as the S.O.S.approach and she said no,but that I could try and use the food chaining technique. Have you seen a high success rate with this approach?
If someone goes to the Koke clinic do they have a day treatment for 6 weeks like Kennedy Krieger? I know that all children are different but on an average using the food chaining technique how long does the process take before a child moves on to a new food? And when to you advance to a new food? Like if my son is willing to take 2 bites of a steak fry, when he usual eats fast food fries then do you move on to sweet potato fries? and what if he tastes, but spits it out and says he doesn't like it, what is the next step?
Oh, and also the pediasure, most days he will eat his fries or chips then say that he is done and ask for pediasure. Some days he won't eat hardly anything and only want pediasure. Is that what you mean by offering it with meals? We have been offering it after we try to get him to eat some solid foods.
Thanks so much for all your information and time.
Thanks again,
Taja
Cheri:Ohhhh...syrup and sauces are so different from what he likes. You are just deepening the aversion when a child turns away from a taste...it is clearly too much. We change taste before texture....I would do an art based activity with pureed fruit as paint and just have fun with exposure. We use sponges and fingers and paint pictures of real fruit. We teach about food rainbows (play fruits and vegetables matched to plastic plates of different colors) and that food of all colors are good for us. keep teaching about food and nutrition, even though he is little. It is so important. The Dole 5 a Day website has fun games on line for kids and teaches about healthy eating.
I don't reward with food. I put out a food or two on the plate that I know a child likes to eat and one tiny amount of something new on a divided plate in the looking place. The expectation is not to eat it yet just to learn about it. I try to get meals back to normal again.
Imagine if you felt challenged and fearful or aversive, every single time you sat down to eat...??? Wouldn't that be awful. Simply taking the pressure off, scheduling meals and snacks, no long meals, shape appetite by keeping meals and snacks under 20 minutes or so....often turns things around a lot. Your son should have one good meal a day as a toddler. Toddlers eat very differently second year of life growth slows way, way down. Portions need to be the right size too. Take the fight out of food, put things out there, don't be afraid to offer a new food in a tiny amount on a small plate beside his plate. Offer foods that are in his chains...the things I suggested that match his sensory needs.
No I don't do lengthy treatments. We do consults and long distance patients come for a three hour assessment and we put a home program together for you. We may have you return in 12 weeks but we do keep up with you via videos and emails and phone calls. You have access to the entire team. We also work with the local therapy team. We send you home with a plan. The vast majority of our families do this themselves in the natural environment. There is no force used and many of our parents are very, very successful. Jase and Stephanie are on the blog and Steph is his mom and she did all of it on her own with us helping guide her. Pull yourself out of paying too much attention to this. Praise him for eating the foods he likes, you may just want to start by cooling down and offering his favorites for a week in a rotation (not the same food every day) and tell him what a good boy he is for eating. Take the stress factor out. I buy cute divided plates (Target has great ones that are inexpensive) and I start by putting a piece of a really visually interesting food on the plate (Bugles for example) and I put them on my fingers and have fun at a meal. Usually the child follows right along and does what I did. Soon we are breaking them apart or filling them up with different foods (look up my fun version of feeding therapy on the blog) and that will show you what I do. Hope this helps!
Taja:Thanks so much Cheri for taking the time to explain the food chaining approach, I am going to try it. It makes sense to me. Today, my daughter, my son, and myself finger painted with pudding. Z__ would only dip one finger in the pudding and put it on the paper and he was done, but at least he tried. I am going to have us finger paint with baby food every day to see if that will help. We also cooked sweet potato fries for him. He tasted it, but spit it out and said that he didn'tlike it. So we gave him his regular fries. I guess maybe next time we will try steak fries. Thanks again for all your time, you have been wonderful!
Cheri: Wow....he went all the way to tasting...so don't stop there. That is fantastic!!! Really praise him for trying! Offer them again next week or something, just like you would cook any other food. Talk about the orange fry...make up a story about the orange fry and see who gets one on their plate next week. Maybe your daughter gets it and make a big deal of it. Just cook one or two and put just one orange fry on the table on someone's plate. Not his yet... Look over on the stove and say, hey there is another one...who gets it? If he doesn't volunteer, you or your husband say "I want it" and eat it. Or cut it in pieces and share if that is what he wants... That is another exposure. Try it again a week later as a game. Whip sweet potatoes or make a sweet potato casserole...He might like it in time, he has to learn to tolerate tastes. The taste is different for him. Expect a rejection on anything new (neophobia-fear of new) is the toddler way.
I would do waffle fries sometimes too. I love to call them baskets or take them apart and make tiny baby fries by pulling little sections off. Smiles are the potatoes that have little smiley faces on them. Don't cook many of them either. That is what is great about fries on a baking stone, you don't have to put too many out and waste food. Or let the kids pick some different fries to put on the baking stone before you cook them. Waffle, crinkle, fast food, sweet, tator tot...just a few of each.....crazy fry night....get it? Food is to be enjoyed.
Loved the paint with pudding, but I would puree real frozen fruit (blueberries for the sky or sea, strawberries or peaches for flowers) in your picture as we want him to eat real fruit and not baby food (which is mainly water). It is fun to get them out, talk about how cold they are, sit them out to warm up, put it in the blender, smell the food and so on....
You can also paint with Cool Whip and add fruit to color parts of the Cool Whip or put some out an a cookie sheet and make all kinds of colors in the Cool Whip snow....
Do you mind if I put some of this on the blog, no names or anything as tips for other parents? C
Taja:Wow, thanks so much for all your time and kindness. Your ideas are great! I am going to try them. We want to help our son so much, but we often get lost or don't know what to do next, like when he ate it then rejected it, your guidance has been a true blessing. Today, Z insisted that he wanted "orange carrots", He has a thing for orange, he likes goldfish crackers, cheetos, gerber crunchies which are really yellow, but you get the idea. So we brought him some cut up carrots, from a can that way it wouldn't be too hard or too soft. We put a piece on a fork and gave it to him. He put the carrots to his lips and then threw the fork down, saying that he didn't like it. So I am assuming that we should try the same method as the sweet potato fry and offer it a later time, maybe to someone else and make a big deal out of it. Yet, we are still happy that he was the one that came up with the idea of trying a carrot. I don't mind at all if you put this up on your blog, you can even use our names we don't mind.
Cheri's comment on this last email:
To Taja and the Readers:
I love the last email about the carrots, she picked canned carrots trying not to go too hard or too soft, he was interested, he was motivated by yellow/orange color and picked this food himself, but at his lip it all fell apart. Why? Now think about all the hard teethers and items children mouth as babies and toddlers. I think he would have had much more success with narrow strips of raw carrot or lightly salted raw carrot. Think of the feel of a raw carrot on your lip vs a cooked one. Think about all the learning opportunities about carrots (Bugs Bunny always has a carrot, Rabbit from Winnie the Pooh or you could go feed horses carrots, my dog Shadow goes crazy when given a baby carrot)...coloring pictures of carrots in coloring books, looking up a video on how they grow on www.cosmeo.com or Dole 5 a Day website. The teaching part is key. A bag of shredded carrots could have also been used for very small pieces. Carrot cake....but the kids have to learn about the food. He is already showing you this with the interest in the food item.
I think our little "Z" has great, great potential...Food Chaining isn't rocket science, but it works because it makes sense.
Thank you Taja! Hopefully other parents and therapists will find this helpful!!!
Just had a lovely mom, Taja, write to me for information about Food Chaining, she wanted to know what we do and how we do it. She needed information to understand our approach vs other facilities in the US who work with feeding. I helped with the basics, rule out underlying disorders, questions about swallowing skills, setting up a schedule of three meals and two to three snacks, no grazing on liquid or nibbling on food all day as this dampens appetite, no force feeding, understanding toddler eating and portion sizes before we got started.
This little boy "Z" is coming to our clinic (217-862-0403) so I am getting his mom started in the right direction. We ended up writing back and forth and decided that this might be a great post to help others 'get it' when trying to actually do this and get started with this type of intervention. People make a lot of mistakes with chaining without guidance and that is why we do the blog and courses to try to supplement the book. This wonderful mom gave me permission to post, thank you so much for that. Anyone working in her area (she is from Florida)...I am looking for therapists who have attended a chaining course or are interested in learning and working with us....
Taja and I wrote back and forth for several days to help problem solve our way through expanding food. This is how I deal with my patients and shape their attempts, so they don't have to do this alone.
_______________
Taja: My name is Taja I have a 2 1/2 year old son with a feeding disorder.I hope you don't mind me writing to you,but I saw your blog and I am trying to gather info on different approaches to feeding disorders. My son has severe reflux and sensory integration dysfunction. He basically lives off of pediasure and will only eat french fries, chips, crackers,and a cinnamon roll from cinnabon ( but sometimes only a few bites). Currently, he is receiving occupational therapy using the S.O.S. approach, but we are not seeing any major improvements, we started speech therapy, but she was using the medical approach and we were not happy,so we stopped the sessions. We are looking into the Kennedy Krieger Institute, but I believe that their approach is more behavioral and doesn't really address the sensory issues. Is the multidisplinary team at koke mills any different from KKI? Any advice would be very appreciated?
Thank you for your time,
Taja
Cheri: Hi. We are extremely different from Kennedy Krieger and many other programs. We do not force a child or take away all the foods a child enjoys eating like some other programs recommend. We do not feel that is necessary to do that or that an approach like that respects the sensory system sufficiently. Imagine eating a food you cannot tolerate? Our goal is to build enjoyment of food and eating for life. We feel children eat the way they do for a real, valid reason. We build on what we consider success, in your case, the foods your child eats.
You can ask your library to order our food chaining book and in it, you hear from each of the professionals on our team (our OT is on maternity leave but another OT is with the team).
What I would want to know is:
Does your child have any chewing/biting swallowing issues?
Untreated reflux? It can be silent, any grimacing when swallowing or eating and suddenly stopping?
Constipation? Diarrhea?
Signs of food allergy?
Phobic reactions to new food?
I assume your therapists have checked this all out, but people miss things. Where are you from? We have people come from other countries, so distance is not an issue.
For your son, I would leave the Pediasure alone as my anchor food (unchanged food) to be his source of nutrition and minerals/vitamins. I would offer it with meals and snacks and not let him graze on it or drink it on and off all day. Some children with sensory issues drink to help self regulate their system. I would branch out to other flavors of chips and crackers and other types of fries (baked Ore Ida fast food fries, waffle, crinkles, crispy or foods like Smiles, Tator Tots or Tator crowns, Hash browns) . With chips, crackers and snacks, there are many of these products made from vegetables or have fruit flavor (Terra Chips, Veggie Stix, Pirate's Booty, Seneca apple chips). Just offering different flavors of chips exposes a child to tastes like cheddar, BBQ, sour cream and onion, salt and vinegar and later we can use those tastes to build to new foods. In time, your cinnamon rolls could become cinnamon roll pop tarts and then we could address other flavors of fruit by trying other types of PopTarts. It could be cinnamon bread, cinnamon toast, cinnamon in french toast or waffle pieces, later to pastries with fruit. Some kids like chocolate and you can do a chocolate fondue with little bites of fruit like banana, strawberry. Some kids like to sprinkle cinnamon sugar on fruit, then we fade the chocolate or sugar over a short period of time. Fruit can be fruit smoothies or shakes, Edy's all fruit popsicles, V-8 splash made into little popsicles, yogurt fruit smoothies, frozen GoGurts.....we would keep layering the chains until your son was branching out each of the food items more and more.
The biggest hurdle is not to push when you start. We only offer a bite or two on the plate. Step one is to learn about the food with the senses other than the mouth. If you push him to taste, you know what will happen, a big and resounding no. We let kids crumble a new food, maybe put a bit on the finger (some kids will go ahead and taste it)...just having new foods in front of you is progress. I always tell people to pretend food is not something to eat, pretend that it is a toy or something else to explore and have fun with. When the emphasis is off the mouth, things tend to improve.
If you are interested in a consult, feel free to have your doctor send you a script to us at 217-862-0440 attn: Michelle. Hope this helps a bit, I know how hard this can be. My work email is fraker.cheri@mhsil.com.
_________________
TAJA: The therapist that my son sees told me that she has taken the course in sensory integration therapy for children and she told me that not all therapist have. She tries to get my son to play with the food, break bread and touch liquids. Bbq sauce since he loves bbq chips and maple syrup because she is trying to get him to eat sweet things since m & m's and the cinnamon roll is the only sweet foods that he will eat.So she has him dip his finger in the sauce and she tries to persuade him into just putting his finger in his mouth, if he won't do that then she tells him to kiss it. He will somtimes do this but it takes a lot of persuading and recently she has been using gerber crunchies since he loves them as a reward. Is this a similar approach to what you would do? Interestingly enough he can play with finger paints (loves them), but if it is a food that he has to touch, he cries and has a meltdown. So he has a great fear of food. He is on medicine for reflux, he had an endosopy done and that was normal and he has been tested for food allgeries he has none. He can swallow and chew fine. He is just stuck on the limited foods that he eats. I asked Z's therapist if food chaining was the same as the S.O.S.approach and she said no,but that I could try and use the food chaining technique. Have you seen a high success rate with this approach?
If someone goes to the Koke clinic do they have a day treatment for 6 weeks like Kennedy Krieger? I know that all children are different but on an average using the food chaining technique how long does the process take before a child moves on to a new food? And when to you advance to a new food? Like if my son is willing to take 2 bites of a steak fry, when he usual eats fast food fries then do you move on to sweet potato fries? and what if he tastes, but spits it out and says he doesn't like it, what is the next step?
Oh, and also the pediasure, most days he will eat his fries or chips then say that he is done and ask for pediasure. Some days he won't eat hardly anything and only want pediasure. Is that what you mean by offering it with meals? We have been offering it after we try to get him to eat some solid foods.
Thanks so much for all your information and time.
Thanks again,
Taja
Cheri:Ohhhh...syrup and sauces are so different from what he likes. You are just deepening the aversion when a child turns away from a taste...it is clearly too much. We change taste before texture....I would do an art based activity with pureed fruit as paint and just have fun with exposure. We use sponges and fingers and paint pictures of real fruit. We teach about food rainbows (play fruits and vegetables matched to plastic plates of different colors) and that food of all colors are good for us. keep teaching about food and nutrition, even though he is little. It is so important. The Dole 5 a Day website has fun games on line for kids and teaches about healthy eating.
I don't reward with food. I put out a food or two on the plate that I know a child likes to eat and one tiny amount of something new on a divided plate in the looking place. The expectation is not to eat it yet just to learn about it. I try to get meals back to normal again.
Imagine if you felt challenged and fearful or aversive, every single time you sat down to eat...??? Wouldn't that be awful. Simply taking the pressure off, scheduling meals and snacks, no long meals, shape appetite by keeping meals and snacks under 20 minutes or so....often turns things around a lot. Your son should have one good meal a day as a toddler. Toddlers eat very differently second year of life growth slows way, way down. Portions need to be the right size too. Take the fight out of food, put things out there, don't be afraid to offer a new food in a tiny amount on a small plate beside his plate. Offer foods that are in his chains...the things I suggested that match his sensory needs.
No I don't do lengthy treatments. We do consults and long distance patients come for a three hour assessment and we put a home program together for you. We may have you return in 12 weeks but we do keep up with you via videos and emails and phone calls. You have access to the entire team. We also work with the local therapy team. We send you home with a plan. The vast majority of our families do this themselves in the natural environment. There is no force used and many of our parents are very, very successful. Jase and Stephanie are on the blog and Steph is his mom and she did all of it on her own with us helping guide her. Pull yourself out of paying too much attention to this. Praise him for eating the foods he likes, you may just want to start by cooling down and offering his favorites for a week in a rotation (not the same food every day) and tell him what a good boy he is for eating. Take the stress factor out. I buy cute divided plates (Target has great ones that are inexpensive) and I start by putting a piece of a really visually interesting food on the plate (Bugles for example) and I put them on my fingers and have fun at a meal. Usually the child follows right along and does what I did. Soon we are breaking them apart or filling them up with different foods (look up my fun version of feeding therapy on the blog) and that will show you what I do. Hope this helps!
Taja:Thanks so much Cheri for taking the time to explain the food chaining approach, I am going to try it. It makes sense to me. Today, my daughter, my son, and myself finger painted with pudding. Z__ would only dip one finger in the pudding and put it on the paper and he was done, but at least he tried. I am going to have us finger paint with baby food every day to see if that will help. We also cooked sweet potato fries for him. He tasted it, but spit it out and said that he didn'tlike it. So we gave him his regular fries. I guess maybe next time we will try steak fries. Thanks again for all your time, you have been wonderful!
Cheri: Wow....he went all the way to tasting...so don't stop there. That is fantastic!!! Really praise him for trying! Offer them again next week or something, just like you would cook any other food. Talk about the orange fry...make up a story about the orange fry and see who gets one on their plate next week. Maybe your daughter gets it and make a big deal of it. Just cook one or two and put just one orange fry on the table on someone's plate. Not his yet... Look over on the stove and say, hey there is another one...who gets it? If he doesn't volunteer, you or your husband say "I want it" and eat it. Or cut it in pieces and share if that is what he wants... That is another exposure. Try it again a week later as a game. Whip sweet potatoes or make a sweet potato casserole...He might like it in time, he has to learn to tolerate tastes. The taste is different for him. Expect a rejection on anything new (neophobia-fear of new) is the toddler way.
I would do waffle fries sometimes too. I love to call them baskets or take them apart and make tiny baby fries by pulling little sections off. Smiles are the potatoes that have little smiley faces on them. Don't cook many of them either. That is what is great about fries on a baking stone, you don't have to put too many out and waste food. Or let the kids pick some different fries to put on the baking stone before you cook them. Waffle, crinkle, fast food, sweet, tator tot...just a few of each.....crazy fry night....get it? Food is to be enjoyed.
Loved the paint with pudding, but I would puree real frozen fruit (blueberries for the sky or sea, strawberries or peaches for flowers) in your picture as we want him to eat real fruit and not baby food (which is mainly water). It is fun to get them out, talk about how cold they are, sit them out to warm up, put it in the blender, smell the food and so on....
You can also paint with Cool Whip and add fruit to color parts of the Cool Whip or put some out an a cookie sheet and make all kinds of colors in the Cool Whip snow....
Do you mind if I put some of this on the blog, no names or anything as tips for other parents? C
Taja:Wow, thanks so much for all your time and kindness. Your ideas are great! I am going to try them. We want to help our son so much, but we often get lost or don't know what to do next, like when he ate it then rejected it, your guidance has been a true blessing. Today, Z insisted that he wanted "orange carrots", He has a thing for orange, he likes goldfish crackers, cheetos, gerber crunchies which are really yellow, but you get the idea. So we brought him some cut up carrots, from a can that way it wouldn't be too hard or too soft. We put a piece on a fork and gave it to him. He put the carrots to his lips and then threw the fork down, saying that he didn't like it. So I am assuming that we should try the same method as the sweet potato fry and offer it a later time, maybe to someone else and make a big deal out of it. Yet, we are still happy that he was the one that came up with the idea of trying a carrot. I don't mind at all if you put this up on your blog, you can even use our names we don't mind.
Cheri's comment on this last email:
To Taja and the Readers:
I love the last email about the carrots, she picked canned carrots trying not to go too hard or too soft, he was interested, he was motivated by yellow/orange color and picked this food himself, but at his lip it all fell apart. Why? Now think about all the hard teethers and items children mouth as babies and toddlers. I think he would have had much more success with narrow strips of raw carrot or lightly salted raw carrot. Think of the feel of a raw carrot on your lip vs a cooked one. Think about all the learning opportunities about carrots (Bugs Bunny always has a carrot, Rabbit from Winnie the Pooh or you could go feed horses carrots, my dog Shadow goes crazy when given a baby carrot)...coloring pictures of carrots in coloring books, looking up a video on how they grow on www.cosmeo.com or Dole 5 a Day website. The teaching part is key. A bag of shredded carrots could have also been used for very small pieces. Carrot cake....but the kids have to learn about the food. He is already showing you this with the interest in the food item.
I think our little "Z" has great, great potential...Food Chaining isn't rocket science, but it works because it makes sense.
Thank you Taja! Hopefully other parents and therapists will find this helpful!!!
Tuesday, April 7, 2009
Food Chaining Course Oak Brook, IL April 24 and 25th
Hi All
Come and see us in Oak Brook, Illinois for the Food Chaining Course. Details available at www.cepauniversity.com.
Come and see us in Oak Brook, Illinois for the Food Chaining Course. Details available at www.cepauniversity.com.
Saturday, March 21, 2009
Way to go, Jase!
Hello all, Stephanie and Jase here! We have some exciting news to share about his eating over the past couple of weeks.
I will start with the first new food and then work up until today! A few months ago, Jase decided it was safe to try some scrambled hamburger with salt and pepper (he LOVES salt and pepper!) After this, he joined us one night for taco's! O'le! He had shredded cheese tacos the first night. But, the next time we had it he tried the taco meat. Then it was cheese tacos with very few crumbles of taco meat mixed in. The next time...yep! equal parts cheese and meat in a taco! He ate 5! That's about how many he eats anytime we have tacos now!
Okay, the next thing...pork roast. We've been making shredded pork in the crock pot and he ate a piece of pork the other night that was approximately the size of an adult fist! He kept asking for more and more and more! We've tried pork chops, but the texture for the pork chops isn't something he likes and ends up gagging. We've just been trying different flavors of the shredded pork...lemon pepper, teriyaki, salt and pepper, etc. He doesn't seem to mind the flavor change!
He has found a love of Ding Dongs, fancy cakes, brownies, and rice crispy treats!!! I know, a lot of sugar but it's variety!
He has always struggled with cold/frozen food so he's always turned down ice cream. However, we found that he will tolerate Dippin Dots Icecream...specifically, oreo, and he loves it now! (You can buy a generic type of dippin dots at Wal-Mart). BUT, lastnight we were at McDonald's (because I was lazy) and I asked him after he finished eating if he wanted an Oreo McFlurry. I wasn't sure if he understood what it was, but I showed him the picture and he said he wanted one. HE ATE IT! It was pretty big so he finished it tonight after eating his supper! Now, we've talked about going to Dairy King (yes, we have Dairy King here) and getting their version of an Oreo Blizzard. It's a little thinner than the McFlurry and can be eaten as a milkshake...but a spoon is still called for. From there, hopefully we can make our own shakes and slowly start thinning it out to take on the consistency of milk. Maybe even dunk some Oreo's here and there in a big glass of cold milk. This is the closest we've ever came to getting him to like milk! I'm very relieved that an avenue has presented itself that will help us get this done!
Also, today he ate a real homemade cupcake!!! In the past, he'd lick the icing, but not eat the cake unless it was angelfood...today he just asked if I would cut it up and he proceeded to eat the whole thing!
Another great feat we've put behind us in the past month is Jase's first trip to the dentist! Yes, I said the dentist. Anyone with a kiddo with/or who has had sensory issues knows what my hesitation was about this. But, he surprised me and was the best little patient ever! He let them take FULL mouth x-rays...yes, when you bite down on the stick and that "space ship" circles all the way around your head..yep, he did that! He let them clean his teeth and do the fluoride, too! And...no cavities! Hooray!
I know this post was long, but so much to share!
Take care everyone!
I will start with the first new food and then work up until today! A few months ago, Jase decided it was safe to try some scrambled hamburger with salt and pepper (he LOVES salt and pepper!) After this, he joined us one night for taco's! O'le! He had shredded cheese tacos the first night. But, the next time we had it he tried the taco meat. Then it was cheese tacos with very few crumbles of taco meat mixed in. The next time...yep! equal parts cheese and meat in a taco! He ate 5! That's about how many he eats anytime we have tacos now!
Okay, the next thing...pork roast. We've been making shredded pork in the crock pot and he ate a piece of pork the other night that was approximately the size of an adult fist! He kept asking for more and more and more! We've tried pork chops, but the texture for the pork chops isn't something he likes and ends up gagging. We've just been trying different flavors of the shredded pork...lemon pepper, teriyaki, salt and pepper, etc. He doesn't seem to mind the flavor change!
He has found a love of Ding Dongs, fancy cakes, brownies, and rice crispy treats!!! I know, a lot of sugar but it's variety!
He has always struggled with cold/frozen food so he's always turned down ice cream. However, we found that he will tolerate Dippin Dots Icecream...specifically, oreo, and he loves it now! (You can buy a generic type of dippin dots at Wal-Mart). BUT, lastnight we were at McDonald's (because I was lazy) and I asked him after he finished eating if he wanted an Oreo McFlurry. I wasn't sure if he understood what it was, but I showed him the picture and he said he wanted one. HE ATE IT! It was pretty big so he finished it tonight after eating his supper! Now, we've talked about going to Dairy King (yes, we have Dairy King here) and getting their version of an Oreo Blizzard. It's a little thinner than the McFlurry and can be eaten as a milkshake...but a spoon is still called for. From there, hopefully we can make our own shakes and slowly start thinning it out to take on the consistency of milk. Maybe even dunk some Oreo's here and there in a big glass of cold milk. This is the closest we've ever came to getting him to like milk! I'm very relieved that an avenue has presented itself that will help us get this done!
Also, today he ate a real homemade cupcake!!! In the past, he'd lick the icing, but not eat the cake unless it was angelfood...today he just asked if I would cut it up and he proceeded to eat the whole thing!
Another great feat we've put behind us in the past month is Jase's first trip to the dentist! Yes, I said the dentist. Anyone with a kiddo with/or who has had sensory issues knows what my hesitation was about this. But, he surprised me and was the best little patient ever! He let them take FULL mouth x-rays...yes, when you bite down on the stick and that "space ship" circles all the way around your head..yep, he did that! He let them clean his teeth and do the fluoride, too! And...no cavities! Hooray!
I know this post was long, but so much to share!
Take care everyone!
Thursday, March 5, 2009
When a Child Aspirates...Dealing with Silent Aspiration
Suzanne Evans Morris has a great article explaining silent aspiration on her New Visions website. I will post a link to this article on the right side of my blog. It is so very hard to for parents to understand the results of a swallow study when silent aspiration is diagnosed. Hope this great resource helps.
Friday, February 27, 2009
What are the Differences between the Food Chaining Course and The What to Do and How When and Why To Do It Course
About the Presenters:
Cheri Fraker, CCC/SLP, CLC and Laura Walbert, CCC/SLP, CLC are speech pathologists, certified lactation consultants who specialize in feeding and swallowing disorders in infants and children. Cheri and Laura have co-authored “Evaluation and Treatment of Pediatric Feeding Disorders from NICU to Childhood.” Cheri and Laura work at Memorial Medical Center’s The Center for Selective Eating and Pediatric Feeding Disorders, a multidisciplinary feeding team clinic in Springfield, Illinois. They are co-owners of Preemietalk and ANEW Way Images. Sibyl Cox, RD, LD, CLC is a pediatric dietitian. Sibyl works at The SIU School of Medicine in Springfield, Illinois. Cheri, Laura and Sibyl were joined by Mark Fishbein, MD, pediatric gastroenterologist from Children’s Memorial Hospital in Chicago, Illinois to write “Food Chaining: The Six Step Solution to Solve Feeding Problems, Stop Picky Eating and Expand Your Child’s Diet.” They have published and presented on feeding disorders internationally.
The following descriptions help differentiate the Food Chaining Course from the What to Do and How When and Why To Do It Course:
More Than “Picky”: Take the Fight Out of Food with Food Chaining©
Presented by: Cheri Fraker, CCC/SLP, CLC, Laura Walbert, CCC/SLP, CLC
Sibyl Cox, RD, LD, CLC
More About This Course: This advanced course focuses on multidisciplinary therapy strategies to help a therapist develop Pre and Food Chaining© programs for infants and children with severe feeding disorders. Pre-Chaining programs focus on precautionary care during the first year of life to decrease the risk of or reduce the severity of feeding disorders. Pre-Chaining programs also focus on treatment to improve swallow function in infants who aspirate. Food Chaining is presented as a six step, comprehensive biobehavioral and sensory based program to expand the food repertoire in children with severely restricted food repertoires. This course also provides invaluable information regarding nutritional assessment and intervention for children with food allergies or needing special diets. Videotaped feeding sessions and evaluations will be used throughout the presentation. Fraker, Walbert and Cox’s Food Chaining therapy programs have been presented as effective therapy techniques at The World Congress of Gastroenterology, Hepatology and Nutrition, The North American Society for Gastroenterology, Hepatology and Nutrition, The American Speech Language and Hearing Convention, The UCLA/MCH Nutrition Leadership Conference and The American Academy for Cerebral Palsy and Developmental Medicine. This course is appropriate for all medical professionals/therapists involved in treatment of infants and children with feeding disorders.
Feeding Therapy for Infants and Children: What to Do and How, When and Why To Do It Presented by: Cheri Fraker, CCC/SLP, CLC and Laura Walbert, CCC/SLP, CLC
More About This Course: This is an intermediate feeding course is focused on the specifics of implementing appropriate evidence-based treatment of pediatric feeding and swallowing disorders. The presenters will teach best practices to feeding therapy that are effective from NICU through childhood. Presentations covers evaluation and treatment of infants and children with feeding/swallowing disorders, with a focus on the specifics of how to structure therapy sessions, feeding products, how to introduce food, what to do for specific feeding problems and why, when and how to advance the program. Videotaped feeding sessions and evaluations will be used throughout the presentation.
Cheri Fraker, CCC/SLP, CLC and Laura Walbert, CCC/SLP, CLC are speech pathologists, certified lactation consultants who specialize in feeding and swallowing disorders in infants and children. Cheri and Laura have co-authored “Evaluation and Treatment of Pediatric Feeding Disorders from NICU to Childhood.” Cheri and Laura work at Memorial Medical Center’s The Center for Selective Eating and Pediatric Feeding Disorders, a multidisciplinary feeding team clinic in Springfield, Illinois. They are co-owners of Preemietalk and ANEW Way Images. Sibyl Cox, RD, LD, CLC is a pediatric dietitian. Sibyl works at The SIU School of Medicine in Springfield, Illinois. Cheri, Laura and Sibyl were joined by Mark Fishbein, MD, pediatric gastroenterologist from Children’s Memorial Hospital in Chicago, Illinois to write “Food Chaining: The Six Step Solution to Solve Feeding Problems, Stop Picky Eating and Expand Your Child’s Diet.” They have published and presented on feeding disorders internationally.
The following descriptions help differentiate the Food Chaining Course from the What to Do and How When and Why To Do It Course:
More Than “Picky”: Take the Fight Out of Food with Food Chaining©
Presented by: Cheri Fraker, CCC/SLP, CLC, Laura Walbert, CCC/SLP, CLC
Sibyl Cox, RD, LD, CLC
More About This Course: This advanced course focuses on multidisciplinary therapy strategies to help a therapist develop Pre and Food Chaining© programs for infants and children with severe feeding disorders. Pre-Chaining programs focus on precautionary care during the first year of life to decrease the risk of or reduce the severity of feeding disorders. Pre-Chaining programs also focus on treatment to improve swallow function in infants who aspirate. Food Chaining is presented as a six step, comprehensive biobehavioral and sensory based program to expand the food repertoire in children with severely restricted food repertoires. This course also provides invaluable information regarding nutritional assessment and intervention for children with food allergies or needing special diets. Videotaped feeding sessions and evaluations will be used throughout the presentation. Fraker, Walbert and Cox’s Food Chaining therapy programs have been presented as effective therapy techniques at The World Congress of Gastroenterology, Hepatology and Nutrition, The North American Society for Gastroenterology, Hepatology and Nutrition, The American Speech Language and Hearing Convention, The UCLA/MCH Nutrition Leadership Conference and The American Academy for Cerebral Palsy and Developmental Medicine. This course is appropriate for all medical professionals/therapists involved in treatment of infants and children with feeding disorders.
Feeding Therapy for Infants and Children: What to Do and How, When and Why To Do It Presented by: Cheri Fraker, CCC/SLP, CLC and Laura Walbert, CCC/SLP, CLC
More About This Course: This is an intermediate feeding course is focused on the specifics of implementing appropriate evidence-based treatment of pediatric feeding and swallowing disorders. The presenters will teach best practices to feeding therapy that are effective from NICU through childhood. Presentations covers evaluation and treatment of infants and children with feeding/swallowing disorders, with a focus on the specifics of how to structure therapy sessions, feeding products, how to introduce food, what to do for specific feeding problems and why, when and how to advance the program. Videotaped feeding sessions and evaluations will be used throughout the presentation.
Sunday, February 22, 2009
Infant Reflexes
Infant Reflexes
Reflexes are involuntary movements or actions. Some movements are spontaneous, occurring as part of the baby's usual activity. Others are responses to certain actions. Reflexes are markers that help identify normal brain and nerve activity. Some reflexes occur only in specific periods of development and then are integrated and fade away. These are some of the normal reflexes seen in newborn babies:
Root reflex
This reflex begins when the corner of the baby's mouth is stroked or touched. It may also be elicited by stroking down the middle of the lower lip. The baby should turn his/her head and open his/her mouth to follow and "root" in the direction of the stroking. This reflex helps the baby find the breast or bottle to begin feeding. It is a very important step in feeding and should not be bypassed. It usually goes away by age 3-4 months, but may persist with some infants. You may also elicit root with a pacifier dipped in breastmilk or formula if your baby is a non-oral feeder or this may help prepare a baby prior to nippling if the infant is having difficulty with oral feedings. Babies also have a hand-to-mouth reflex that goes with rooting and sucking and may suck on fingers or hands. This may also help prepare the baby for nippling.
Suck reflex
When the roof of the baby's mouth is touched, the baby will begin to suck. This reflex does not begin until about the 32nd week of pregnancy and is not fully developed until about 36 weeks. This is why we suggest waiting until approximately 34-36 weeks for active nippling attempts in the NICU. The sensory receptors in the throat are not fully active until after 34 weeks. The baby needs to be able to feel liquid in the throat to swallow well. Premature babies may have a weak or immature sucking ability.
Moro reflex
The Moro reflex is often called a startle reflex because it usually occurs when a baby is startled by a loud sound or movement. In response to sound, the baby throws back his/her head, extends out the arms and legs, cries, then pulls the arms and legs back in. A baby's own cry can startle him/her and begin this reflex. This reflex ends at about five to six months.
Tonic neck reflex
When a baby's head is turned to one side, the arm on that side stretches out and the opposite arm bends up at the elbow. This is often called the "fencing" position. The tonic neck reflex ends at about six to seven months.
Grasp reflex
Stroking the palm of a baby's hand causes the baby to close his/her fingers in a grasp. The grasp reflex lasts only a couple of months. Grasp is also a good reflex to elicit while feeding. It may be stronger in premature babies.
Babinski reflex
When the sole of the foot is firmly stroked, the big toe bends back toward the top of the foot and the other toes fan out. This is a normal reflex up that lasts until about 2 years of age.
Step reflex
This reflex is also called the walking or dance reflex because a baby appears to take steps when held upright with his/her feet touching a solid surface.
Reflexes are involuntary movements or actions. Some movements are spontaneous, occurring as part of the baby's usual activity. Others are responses to certain actions. Reflexes are markers that help identify normal brain and nerve activity. Some reflexes occur only in specific periods of development and then are integrated and fade away. These are some of the normal reflexes seen in newborn babies:
Root reflex
This reflex begins when the corner of the baby's mouth is stroked or touched. It may also be elicited by stroking down the middle of the lower lip. The baby should turn his/her head and open his/her mouth to follow and "root" in the direction of the stroking. This reflex helps the baby find the breast or bottle to begin feeding. It is a very important step in feeding and should not be bypassed. It usually goes away by age 3-4 months, but may persist with some infants. You may also elicit root with a pacifier dipped in breastmilk or formula if your baby is a non-oral feeder or this may help prepare a baby prior to nippling if the infant is having difficulty with oral feedings. Babies also have a hand-to-mouth reflex that goes with rooting and sucking and may suck on fingers or hands. This may also help prepare the baby for nippling.
Suck reflex
When the roof of the baby's mouth is touched, the baby will begin to suck. This reflex does not begin until about the 32nd week of pregnancy and is not fully developed until about 36 weeks. This is why we suggest waiting until approximately 34-36 weeks for active nippling attempts in the NICU. The sensory receptors in the throat are not fully active until after 34 weeks. The baby needs to be able to feel liquid in the throat to swallow well. Premature babies may have a weak or immature sucking ability.
Moro reflex
The Moro reflex is often called a startle reflex because it usually occurs when a baby is startled by a loud sound or movement. In response to sound, the baby throws back his/her head, extends out the arms and legs, cries, then pulls the arms and legs back in. A baby's own cry can startle him/her and begin this reflex. This reflex ends at about five to six months.
Tonic neck reflex
When a baby's head is turned to one side, the arm on that side stretches out and the opposite arm bends up at the elbow. This is often called the "fencing" position. The tonic neck reflex ends at about six to seven months.
Grasp reflex
Stroking the palm of a baby's hand causes the baby to close his/her fingers in a grasp. The grasp reflex lasts only a couple of months. Grasp is also a good reflex to elicit while feeding. It may be stronger in premature babies.
Babinski reflex
When the sole of the foot is firmly stroked, the big toe bends back toward the top of the foot and the other toes fan out. This is a normal reflex up that lasts until about 2 years of age.
Step reflex
This reflex is also called the walking or dance reflex because a baby appears to take steps when held upright with his/her feet touching a solid surface.
General Tips for Feeding Preemies and Preemie Graduates
NOTE: If your baby is experiencing long difficult feedings, gulpy swallows, liquid spilling from the mouth, spitting up excessively after feeding, choking, cough, congestion that increases with feeding, feeding aversion, clamping down on the nipple to stop flow rate...contact your physician. These are signs of problems with feeding and possibly issues with safety of the swallow.
1. Swaddle the baby securely. A larger baby can be swaddled firmly around the hips and the blanket can go around the mid-upper arms for good stability to the body. Swaddling provides boundaries around the body and is good for helping the baby maintain an organized state while feeding. It also supports the body and lets the muscles of the mouth work optimally.
2. Elicit the root reflex by stroking down the lip with the bottle nipple, stroke twice, rather firmly and wait and see if the baby opens the mouth and drops the tongue. Elicit the root again. This reflex is very important when feeding. You may also want to briefly offer a pacifier and get your baby sucking well and then transition to bottle. But elicit the root reflex again, don't just poke the bottle in the mouth.
3. A slight side tilt position can be very helpful. This mimics breastfeeding positioning and the milk will move to the side of the cheek and then back for swallowing instead of falling right over the base of the tongue and into the throat.
4. Tip the bottle nipple down for a few seconds to empty it of formula or breastmilk if your baby is gulpy or getting too much. This is called pacing of the feeding. Your baby needs to learn to stop and take a break and swallow. External pacing by the feeder allows the baby to get a much needed breath. Yes, there is some air ingestion, but this is a non-issue compared to aspirating the feeding.
5. Use a good slow flow or medium flow nipple if your baby can handle that rate. The baby should not have milk spilling from the mouth. You do not want to see wide eyes, watery eyes or hear gulpy swallows. Many babies do better on a slow flow product. We like the Gerber silicone products in slow and medium, Parent's Choice 0+ for babies with reduced lip seal, the Dr Brown Level I slow, level II medium flow nipples. If you are using cereal, blenderize the flakes so the cereal is a fine powder. The Dr Brown Level III and IV nipples can be used for cereal feedings. If you are using Simply Thick, we have concerns about this product (see blog for articles). Make sure you are whisking this product with a fork or mixer. Do not shake. We do not like using thickened feedings unless absolutely necessary and recommend instead that therapy begin to work on improving swallowing skills. Never, under any circumstances slit, cut or enlarge the hole of a nipple. This is an unsafe practice and in the hospital, considered tampering with medical equipment. Flow rate will continue to increase and cannot be regulated. This creates a risk for aspiration.
6. Keep feedings within 20 to 30 minutes maximum. Long feedings burn energy and calories. If your baby is struggling with growth, contact your physician and see about a visit to a pediatric dietitian for assistance.
1. Swaddle the baby securely. A larger baby can be swaddled firmly around the hips and the blanket can go around the mid-upper arms for good stability to the body. Swaddling provides boundaries around the body and is good for helping the baby maintain an organized state while feeding. It also supports the body and lets the muscles of the mouth work optimally.
2. Elicit the root reflex by stroking down the lip with the bottle nipple, stroke twice, rather firmly and wait and see if the baby opens the mouth and drops the tongue. Elicit the root again. This reflex is very important when feeding. You may also want to briefly offer a pacifier and get your baby sucking well and then transition to bottle. But elicit the root reflex again, don't just poke the bottle in the mouth.
3. A slight side tilt position can be very helpful. This mimics breastfeeding positioning and the milk will move to the side of the cheek and then back for swallowing instead of falling right over the base of the tongue and into the throat.
4. Tip the bottle nipple down for a few seconds to empty it of formula or breastmilk if your baby is gulpy or getting too much. This is called pacing of the feeding. Your baby needs to learn to stop and take a break and swallow. External pacing by the feeder allows the baby to get a much needed breath. Yes, there is some air ingestion, but this is a non-issue compared to aspirating the feeding.
5. Use a good slow flow or medium flow nipple if your baby can handle that rate. The baby should not have milk spilling from the mouth. You do not want to see wide eyes, watery eyes or hear gulpy swallows. Many babies do better on a slow flow product. We like the Gerber silicone products in slow and medium, Parent's Choice 0+ for babies with reduced lip seal, the Dr Brown Level I slow, level II medium flow nipples. If you are using cereal, blenderize the flakes so the cereal is a fine powder. The Dr Brown Level III and IV nipples can be used for cereal feedings. If you are using Simply Thick, we have concerns about this product (see blog for articles). Make sure you are whisking this product with a fork or mixer. Do not shake. We do not like using thickened feedings unless absolutely necessary and recommend instead that therapy begin to work on improving swallowing skills. Never, under any circumstances slit, cut or enlarge the hole of a nipple. This is an unsafe practice and in the hospital, considered tampering with medical equipment. Flow rate will continue to increase and cannot be regulated. This creates a risk for aspiration.
6. Keep feedings within 20 to 30 minutes maximum. Long feedings burn energy and calories. If your baby is struggling with growth, contact your physician and see about a visit to a pediatric dietitian for assistance.
Friday, February 20, 2009
GER in Infants and Children
Journal of Pediatric Gastroenterology and Nutrition :Volume 32 Supplement 2January 2001pp S1-S31
Guidelines for Evaluation and Treatment of Gastroesophageal Reflux in Infants and Children: Recommendations of the North American Society for Pediatric Gastroenterology and Nutrition
Rudolph, Colin D. MD, PhD; Mazur, Lynnette J. MD; Liptak, Gregory S. MD; Baker, Robert D. MD, PhD; Boyle, John T. MD; Colletti, Richard B. MD; Gerson, William T. MD; Werlin, Steven L. MD
Abstract
Gastroesophageal reflux (GER), defined as passage of gastric contents into the esophagus, and GER disease (GERD), defined as symptoms or complications of GER, are common pediatric problems encountered by both primary and specialty medical providers. Clinical manifestations of GERD in children include vomiting, poor weight gain, dysphagia, abdominal or substernal pain, esophagitis and respiratory disorders. The GER Guideline Committee of the North American Society for Pediatric Gastroenterology and Nutrition has formulated a clinical practice guideline for the management of pediatric GER. The GER Guideline Committee, consisting of a primary care pediatrician, two clinical epidemiologists (who also practice primary care pediatrics) and five pediatric gastroenterologists, based its recommendations on an integration of a comprehensive and systematic review of the medical literature combined with expert opinion. Consensus was achieved through Nominal Group Technique, a structured quantitative method.
The Committee examined the value of diagnostic tests and treatment modalities commonly used for the management of GERD, and how those interventions can be applied to clinical situations in the infant and older child. The guideline provides recommendations for management by the primary care provider, including evaluation, initial treatment, follow-up management and indications for consultation by a specialist. The guideline also provides recommendations for management by the pediatric gastroenterologist.
This document represents the official recommendations of the North American Society for Pediatric Gastroenterology and Nutrition on the evaluation and treatment of gastroesophageal reflux in infants and children. The American Academy of Pediatrics has also endorsed these recommendations. The recommendations are summarized in a synopsis within the article. This review and recommendations are a general guideline and are not intended as a substitute for clinical judgment or as a protocol for the management of all patients with this problem.
Guidelines for Evaluation and Treatment of Gastroesophageal Reflux in Infants and Children: Recommendations of the North American Society for Pediatric Gastroenterology and Nutrition
Rudolph, Colin D. MD, PhD; Mazur, Lynnette J. MD; Liptak, Gregory S. MD; Baker, Robert D. MD, PhD; Boyle, John T. MD; Colletti, Richard B. MD; Gerson, William T. MD; Werlin, Steven L. MD
Abstract
Gastroesophageal reflux (GER), defined as passage of gastric contents into the esophagus, and GER disease (GERD), defined as symptoms or complications of GER, are common pediatric problems encountered by both primary and specialty medical providers. Clinical manifestations of GERD in children include vomiting, poor weight gain, dysphagia, abdominal or substernal pain, esophagitis and respiratory disorders. The GER Guideline Committee of the North American Society for Pediatric Gastroenterology and Nutrition has formulated a clinical practice guideline for the management of pediatric GER. The GER Guideline Committee, consisting of a primary care pediatrician, two clinical epidemiologists (who also practice primary care pediatrics) and five pediatric gastroenterologists, based its recommendations on an integration of a comprehensive and systematic review of the medical literature combined with expert opinion. Consensus was achieved through Nominal Group Technique, a structured quantitative method.
The Committee examined the value of diagnostic tests and treatment modalities commonly used for the management of GERD, and how those interventions can be applied to clinical situations in the infant and older child. The guideline provides recommendations for management by the primary care provider, including evaluation, initial treatment, follow-up management and indications for consultation by a specialist. The guideline also provides recommendations for management by the pediatric gastroenterologist.
This document represents the official recommendations of the North American Society for Pediatric Gastroenterology and Nutrition on the evaluation and treatment of gastroesophageal reflux in infants and children. The American Academy of Pediatrics has also endorsed these recommendations. The recommendations are summarized in a synopsis within the article. This review and recommendations are a general guideline and are not intended as a substitute for clinical judgment or as a protocol for the management of all patients with this problem.
Classifying Complex Feeding Disorders
"Classifying Complex Pediatric Feeding Disorders
Burklow, Kathleen A.*†‡; Phelps, Anne N.†; Schultz, Janet R.*§; McConnell, Keith†; Rudolph, Colin†‡
*Division of Psychology and †Interdisciplinary Feeding Team, Children's Center for Motility Disorders, Division of Gastroenterology and Nutrition, Children's Hospital Medical Center; ‡Department of Pediatrics, University of Cincinnati College of Medicine; and §Department of Psychology, Xavier University, Cincinnati, Ohio, U.S.A.
Address correspondence and requests for reprints to Dr. K. A. Burklow, Division of Psychology, Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, 45229, U.S.A.
Received April 14, 1997; revised November 18, 1997; accepted December 31, 1997.
ABSTRACT
Background: This study defines the multiple characteristics associated with complex pediatric feeding problems and determines the relative frequency of each classification in a population referred to an interdisciplinary feeding team.
Methods: The written reports from team evaluations on 103 children (64 males, 39 females; age range 4 months to 17 years) were reviewed. Prematurity and/or presence of developmental delay was coded. Identified factors related to current feeding problems were coded according to five categories: structural abnormalities, neurological conditions, behavioral issues, cardiorespiratory problems, metabolic dysfunction.
Results: Interrater reliability for the classification coding was 88%. Thirty-eight percent of the children had a history of prematurity and 74% were reported to have evidence of developmental delay. The following five categories or combinations were coded most frequently: structural-neurological-behavioral(30%), neurological-behavioral (27%), behavioral (12%), structural-behavioral(9%), and structural-neurological (8%). Overall, behavioral issues were coded more often (85%) than neurological conditions (73%), structural abnormalities(57%), cardiorespiratory problems (7%), or metabolic dysfunction (5%).
Conclusions: Data analysis using this classification system revealed that the majority of children in this sample had a behavioral component to their complex feeding problem, regardless of concurrent physical factors. These findings suggest that complex pediatric feeding problems are biobehavioral conditions in which biological and behavioral aspects mutually interact, and both need to be addressed to achieve normal feeding.
Burklow, Kathleen A.*†‡; Phelps, Anne N.†; Schultz, Janet R.*§; McConnell, Keith†; Rudolph, Colin†‡
*Division of Psychology and †Interdisciplinary Feeding Team, Children's Center for Motility Disorders, Division of Gastroenterology and Nutrition, Children's Hospital Medical Center; ‡Department of Pediatrics, University of Cincinnati College of Medicine; and §Department of Psychology, Xavier University, Cincinnati, Ohio, U.S.A.
Address correspondence and requests for reprints to Dr. K. A. Burklow, Division of Psychology, Children's Hospital Medical Center, 3333 Burnet Avenue, Cincinnati, OH, 45229, U.S.A.
Received April 14, 1997; revised November 18, 1997; accepted December 31, 1997.
ABSTRACT
Background: This study defines the multiple characteristics associated with complex pediatric feeding problems and determines the relative frequency of each classification in a population referred to an interdisciplinary feeding team.
Methods: The written reports from team evaluations on 103 children (64 males, 39 females; age range 4 months to 17 years) were reviewed. Prematurity and/or presence of developmental delay was coded. Identified factors related to current feeding problems were coded according to five categories: structural abnormalities, neurological conditions, behavioral issues, cardiorespiratory problems, metabolic dysfunction.
Results: Interrater reliability for the classification coding was 88%. Thirty-eight percent of the children had a history of prematurity and 74% were reported to have evidence of developmental delay. The following five categories or combinations were coded most frequently: structural-neurological-behavioral(30%), neurological-behavioral (27%), behavioral (12%), structural-behavioral(9%), and structural-neurological (8%). Overall, behavioral issues were coded more often (85%) than neurological conditions (73%), structural abnormalities(57%), cardiorespiratory problems (7%), or metabolic dysfunction (5%).
Conclusions: Data analysis using this classification system revealed that the majority of children in this sample had a behavioral component to their complex feeding problem, regardless of concurrent physical factors. These findings suggest that complex pediatric feeding problems are biobehavioral conditions in which biological and behavioral aspects mutually interact, and both need to be addressed to achieve normal feeding.
Publications of Interest
ARTICLE: Burklow Kathleen A; McGrath Ann M; Valerius Kristin S; Rudolph Colin
"Relationship between feeding difficulties, medical complexity, and gestational age.
Nutrition in clinical practice : Official publication of the American Society for Parenteral and Enteral Nutrition" 2002;17(6):373-8.
BACKGROUND: This study examined feeding skills differences in medically complex children born prematurely and full term and sought to determine whether later feeding difficulties within this medically complicated sample were related to medical factors or factors related to preterm status. METHODS: A total of 143 pediatric patients referred to an outpatient clinic for feeding, nutrition, or growth problems were compared by their gestational age at birth across a variety of dependent variables related to feeding development and behaviors. RESULTS: Full-term and preterm children did not demonstrate significant differences in feeding difficulties at first oral feeding. By the time of introduction to solid (cereal) feeding, however, preterm children more often continued to demonstrate difficulty than full-term children. Regression analyses indicated that medical factors, primarily the need for breathing assistance, accounted for more of the variance than prematurity alone. CONCLUSIONS: Medically complex children, especially those with an early need for respiratory support, will benefit from ongoing oral-motor feeding intervention.
ARTICLE: 2008: Li B U K; Lefevre Frank; Chelimsky Gisela G; Boles Richard G; Nelson Susanne P; Lewis Donald W; Linder Steven L; Issenman Robert M; Rudolph Colin D;
North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition consensus statement on the diagnosis and management of cyclic vomiting syndrome.
Journal of pediatric gastroenterology and nutrition 2008;47(3):379-93.
BACKGROUND: Cyclic vomiting syndrome (CVS) is a disorder noted for its unique intensity of vomiting, repeated emergency department visits and hospitalizations, and reduced quality of life. It is often misdiagnosed due to the unappreciated pattern of recurrence and lack of confirmatory testing. Because no accepted approach to management has been established, the task force was charged to develop a report on diagnosis and treatment of CVS based upon a review of the medical literature and expert opinion. The key issues addressed were the diagnostic criteria, the appropriate evaluation, the prophylactic therapy, and the therapy of acute attacks. The recommended diagnostic approach is to avoid "shotgun" testing and instead to use a strategy of targeted testing that varies with the presence of 4 red flags: abdominal signs (eg, bilious vomiting, tenderness), triggering events (eg, fasting, high protein meal), abnormal neurological examination (eg, altered mental status, papilledema), and progressive worsening or a changing pattern of vomiting episodes. Therapeutic recommendations include lifestyle changes, prophylactic therapy (eg, cyproheptadine in children 5 years or younger and amitriptyline for those older than 5), and acute therapy (eg, 5-hydroxytryptamine receptor agonists, termed triptans herein, as abortive therapy, and 10% dextrose and ondansetron for those requiring intravenous hydration). This document represents the official recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition for the diagnosis and treatment of CVS in children and adolescents.
"Relationship between feeding difficulties, medical complexity, and gestational age.
Nutrition in clinical practice : Official publication of the American Society for Parenteral and Enteral Nutrition" 2002;17(6):373-8.
BACKGROUND: This study examined feeding skills differences in medically complex children born prematurely and full term and sought to determine whether later feeding difficulties within this medically complicated sample were related to medical factors or factors related to preterm status. METHODS: A total of 143 pediatric patients referred to an outpatient clinic for feeding, nutrition, or growth problems were compared by their gestational age at birth across a variety of dependent variables related to feeding development and behaviors. RESULTS: Full-term and preterm children did not demonstrate significant differences in feeding difficulties at first oral feeding. By the time of introduction to solid (cereal) feeding, however, preterm children more often continued to demonstrate difficulty than full-term children. Regression analyses indicated that medical factors, primarily the need for breathing assistance, accounted for more of the variance than prematurity alone. CONCLUSIONS: Medically complex children, especially those with an early need for respiratory support, will benefit from ongoing oral-motor feeding intervention.
ARTICLE: 2008: Li B U K; Lefevre Frank; Chelimsky Gisela G; Boles Richard G; Nelson Susanne P; Lewis Donald W; Linder Steven L; Issenman Robert M; Rudolph Colin D;
North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition consensus statement on the diagnosis and management of cyclic vomiting syndrome.
Journal of pediatric gastroenterology and nutrition 2008;47(3):379-93.
BACKGROUND: Cyclic vomiting syndrome (CVS) is a disorder noted for its unique intensity of vomiting, repeated emergency department visits and hospitalizations, and reduced quality of life. It is often misdiagnosed due to the unappreciated pattern of recurrence and lack of confirmatory testing. Because no accepted approach to management has been established, the task force was charged to develop a report on diagnosis and treatment of CVS based upon a review of the medical literature and expert opinion. The key issues addressed were the diagnostic criteria, the appropriate evaluation, the prophylactic therapy, and the therapy of acute attacks. The recommended diagnostic approach is to avoid "shotgun" testing and instead to use a strategy of targeted testing that varies with the presence of 4 red flags: abdominal signs (eg, bilious vomiting, tenderness), triggering events (eg, fasting, high protein meal), abnormal neurological examination (eg, altered mental status, papilledema), and progressive worsening or a changing pattern of vomiting episodes. Therapeutic recommendations include lifestyle changes, prophylactic therapy (eg, cyproheptadine in children 5 years or younger and amitriptyline for those older than 5), and acute therapy (eg, 5-hydroxytryptamine receptor agonists, termed triptans herein, as abortive therapy, and 10% dextrose and ondansetron for those requiring intravenous hydration). This document represents the official recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition for the diagnosis and treatment of CVS in children and adolescents.
BACKGROUND: This study examined feeding skills differences in medically complex children born prematurely and full term and sought to determine whether later feeding difficulties within this medically complicated sample were related to medical factors or factors related to preterm status. METHODS: A total of 143 pediatric patients referred to an outpatient clinic for feeding, nutrition, or growth problems were compared by their gestational age at birth across a variety of dependent variables related to feeding development and behaviors. RESULTS: Full-term and preterm children did not demonstrate significant differences in feeding difficulties at first oral feeding. By the time of introduction to solid (cereal) feeding, however, preterm children more often continued to demonstrate difficulty than full-term children. Regression analyses indicated that medical factors, primarily the need for breathing assistance, accounted for more of the variance than prematurity alone. CONCLUSIONS: Medically complex children, especially those with an early need for respiratory support, will benefit from ongoing oral-motor feeding intervention.
Wednesday, February 4, 2009
Laura
My friend is in the hospital. Laura and I returned from California and she ended up with mastoiditis. This means she had an untreated ear infection which passed from her middle ear into the mastoid process (that bony area behind the ear). The mastoid is a bone that basically has a bunch of little holes throughout it. The infection is scary (close to the brain) and very painful. She was in ER and briefly at Memorial and returned yesterday. I am going to see her today. She just needs rest, peace and quiet and some big big drugs. I am praying that she gets better soon. I am lost without her.
Tuesday, February 3, 2009
New Courses
Hi All
We are busy girls this spring. We just finished a course in California, thank you to a WONDERFUL audience. Everyone was so nice and we hope to go to Alaska soon! We will be coming to the following areas:
March 12 and 13 Little Rock, Arkansas
April 2 and 3rd Boston, Mass (CEPA course)
April 24 and 25 Oak Brook, Illinois (CEPA course)
May 15 and 16 Spokane, Washington
October-We are speaking at the National Neonatal Nutrition Course More information coming soon!
December 4 and 5 TBA with Marsha Dunn Klein!!! (CEPA)
A course in Texas is likely again this fall. We haven't set our fall schedule yet. So keep an eye out for updates.
We are busy girls this spring. We just finished a course in California, thank you to a WONDERFUL audience. Everyone was so nice and we hope to go to Alaska soon! We will be coming to the following areas:
March 12 and 13 Little Rock, Arkansas
April 2 and 3rd Boston, Mass (CEPA course)
April 24 and 25 Oak Brook, Illinois (CEPA course)
May 15 and 16 Spokane, Washington
October-We are speaking at the National Neonatal Nutrition Course More information coming soon!
December 4 and 5 TBA with Marsha Dunn Klein!!! (CEPA)
A course in Texas is likely again this fall. We haven't set our fall schedule yet. So keep an eye out for updates.
Tuesday, January 20, 2009
BDI Playhouse in Tinley Park...The Greatest Sensory Room I Have Ever Seen!
We had a rip roaring time at the BDI Playhouse this weekend. We did a two day inservice there. I was so impressed with Janis's facility and her sensory room. Her husband designed it for her. Talk about amazing!!!! I will post photos later. What a great resource for families. Check it out!!!
Sunday, January 11, 2009
We will be in beautiful Santa Ana, California January 30 and 31, 2009
Laura and I are repeating our newest course "Feeding Therapy for Infants and Children: What To Do and How, When and Why To Do It." We taught this course for the 1st time in Denver and it was very well received. It is a fun course. Hope you can join us there!
Friday, January 2, 2009
January 16 and 17th Course in Chicago Area
Laura, Sibyl and I are doing a course sponsored by BDI Playhouse in Chicago for Early Intervention. Come check it out.
More Than "Picky": Take the Fight Out of Food with Food Chaining
Presented By: Cheri Fraker, Laura Walbert, & Sibyl Cox
Description:
This advanced two-day course is designed to instruct professionals in successful evaluation and treatment of children with complex feeding and swallowing disorders. Multidisciplinary evidence-based information pertaining to pediatric feeding disorders will be presented with emphasis on Food Chaining as a treatment technique. The course will focus on development of comprehensive multidisciplinary treatment programs for the special topics of autism, cerebral palsy, food allergy/special diet needs, feeding aversion, prematurity, visual impairment, sensory and/or behavioral feeding disorders. Fraker, Walbert, and Cox's Food Pre and Chaining Programs will be demonstrated to instruct participants in the techniques of assessment of core diet, flavor mapping, flavor masking, transitional flavors, and use of rating scales to introduce foods in a systematic manner.
Category: Intervention
Credit Hours: 9 EI Contact Hours in Intervention AND 5 Hours in Atypical Development AND 1 Hour in Assessment
Location: BDI Playhouse
Address: (Map this address)
11411 W 183rd St.
Orland Park, IL 60467
Meeting Time: 8:00 AM - 4:30 PM
Registration Time: 7:30 AM
Contact for more information:
Teresa Dalot
708-478-1820
tdalot@bdiplayhouse.com
Cost: call for cost
More Than "Picky": Take the Fight Out of Food with Food Chaining
Presented By: Cheri Fraker, Laura Walbert, & Sibyl Cox
Description:
This advanced two-day course is designed to instruct professionals in successful evaluation and treatment of children with complex feeding and swallowing disorders. Multidisciplinary evidence-based information pertaining to pediatric feeding disorders will be presented with emphasis on Food Chaining as a treatment technique. The course will focus on development of comprehensive multidisciplinary treatment programs for the special topics of autism, cerebral palsy, food allergy/special diet needs, feeding aversion, prematurity, visual impairment, sensory and/or behavioral feeding disorders. Fraker, Walbert, and Cox's Food Pre and Chaining Programs will be demonstrated to instruct participants in the techniques of assessment of core diet, flavor mapping, flavor masking, transitional flavors, and use of rating scales to introduce foods in a systematic manner.
Category: Intervention
Credit Hours: 9 EI Contact Hours in Intervention AND 5 Hours in Atypical Development AND 1 Hour in Assessment
Location: BDI Playhouse
Address: (Map this address)
11411 W 183rd St.
Orland Park, IL 60467
Meeting Time: 8:00 AM - 4:30 PM
Registration Time: 7:30 AM
Contact for more information:
Teresa Dalot
708-478-1820
tdalot@bdiplayhouse.com
Cost: call for cost
Tuesday, December 16, 2008
Blessed
I have been reading Alicia and Jessica's blogs and Stephanie's posts and I am so, so blessed to have these wonderful women in my life and call them my friends. I am so blessed to have been a part in helping their children. I have had such wonderful families to work with over the years. There is so much good in this world. I am so blessed to be able to go to work at a place I love as much as Koke Mill and actually earn a living helping other people.
I am blessed to have my work at Koke Mill, Preemietalk and now with my ANEW girls. Blessed to have the books and research studies and all the therapy team of "KokeeGirls." I am blessed to have Jane and Shannon lead our program. I am so blessed to have Cheryl Swenny, Sibyl Cox, Gretchen Conway and Michelle McCombs at my side each day in clinic. Without them, I am nothing. Michelle is my rock, she is so vital to our entire team. I am so blessed to learn from them. I literally thank God for Mark Fishbein, MD, mentor, friend and who saved my son from the ravages of CVS. I get to see the wonderful Chris Mogren, RN (not nearly enough) and give him a great big hug. We miss you Chris! The support these people give me is what keeps me going. Our clinic team, we have walked through dark days together. This clinic came at a price and like a phoenix rose again, but it was so worth going through that with these dear people beside me. We have a bond that will last a lifetime.
I am so blessed to have Laura Walbert in my life as business partner and best friend. Every day we laugh. It is so easy when you know someone so well. She just has to look at me and we both know what the other person is thinking. She has changed my life. It just keeps getting better too.
Christmas is a time to reflect on the blessings in your life. I have been surrounded with such incredibly talented, generous people who share their gifts and knowledge with me. Besides my family, they are my dearest treasures. They are all my friends and I love them with all my heart. And I just wanted to post that in cyberspace for all the world to see.
I am blessed to have my work at Koke Mill, Preemietalk and now with my ANEW girls. Blessed to have the books and research studies and all the therapy team of "KokeeGirls." I am blessed to have Jane and Shannon lead our program. I am so blessed to have Cheryl Swenny, Sibyl Cox, Gretchen Conway and Michelle McCombs at my side each day in clinic. Without them, I am nothing. Michelle is my rock, she is so vital to our entire team. I am so blessed to learn from them. I literally thank God for Mark Fishbein, MD, mentor, friend and who saved my son from the ravages of CVS. I get to see the wonderful Chris Mogren, RN (not nearly enough) and give him a great big hug. We miss you Chris! The support these people give me is what keeps me going. Our clinic team, we have walked through dark days together. This clinic came at a price and like a phoenix rose again, but it was so worth going through that with these dear people beside me. We have a bond that will last a lifetime.
I am so blessed to have Laura Walbert in my life as business partner and best friend. Every day we laugh. It is so easy when you know someone so well. She just has to look at me and we both know what the other person is thinking. She has changed my life. It just keeps getting better too.
Christmas is a time to reflect on the blessings in your life. I have been surrounded with such incredibly talented, generous people who share their gifts and knowledge with me. Besides my family, they are my dearest treasures. They are all my friends and I love them with all my heart. And I just wanted to post that in cyberspace for all the world to see.
Control and Behavioral Feeding Therapy Programs
I keep thinking about the psych lecture about feeding therapy that I listened to recently at a course. The presenter kept hammering away about the child fighting for control. She was going to break him, take control as part of treatment and force foods on him, regardless of his response. His body reacted violently with vomiting, but she was still emphasizing the control word. What about other words, like respect?
Control. That is a big word.
Don't you want to feel in control of your body when you eat? Don't you want a sense of control regarding when to start, what to choose, what size bite, what food, when to drink, what drink size and when to stop eating? Don't you need to be in control for such a challenging task as eating?
I see so many feeding sessions where I can FEEL the waves of pressure coming off the therapist to get that bite of food to the child's mouth. Parents do the same thing when they are told to get their child to eat. Kids sense it and back away. Mealtimes become a nightmare that is repeated 3+ times per day. How do you feel when you eat? What emotions make your meal enjoyable. Pressure and battles for control work against your goals. It isn't relaxed, it isn't easy, it isn't a meal. Yes, in treatment I could force a kid to eat. I might get the plate empty, but I have not given the child a life strategy. I have not built on a solid foundation. I cannot do it that way. Now, I do work to get my kids to achieve more, but in a way that walks that control line. I give them the control and respect they deserve but I structure the session and guide it. I act as their cheerleader, their strategist to help them find a way to succeed with a food and have more control when eating. I want to help my kids feel safe at the table and to eat food with enjoyment.
I think what was truly magical at our course with Marsha Dunn Klein was watching her engage these children on her videos in such a respectful, supportive manner. The Get Permission approach with Food Chaining is such a powerful tool for kids and their families. I ordered all of Marsha's DVD's for my clinic. (By the way, Marsha has agreed to lecture with Laura and I again. So I am beyond thrilled about that!!!)
Happy Chaining with Permission, My Friends! Cheri
Control. That is a big word.
Don't you want to feel in control of your body when you eat? Don't you want a sense of control regarding when to start, what to choose, what size bite, what food, when to drink, what drink size and when to stop eating? Don't you need to be in control for such a challenging task as eating?
I see so many feeding sessions where I can FEEL the waves of pressure coming off the therapist to get that bite of food to the child's mouth. Parents do the same thing when they are told to get their child to eat. Kids sense it and back away. Mealtimes become a nightmare that is repeated 3+ times per day. How do you feel when you eat? What emotions make your meal enjoyable. Pressure and battles for control work against your goals. It isn't relaxed, it isn't easy, it isn't a meal. Yes, in treatment I could force a kid to eat. I might get the plate empty, but I have not given the child a life strategy. I have not built on a solid foundation. I cannot do it that way. Now, I do work to get my kids to achieve more, but in a way that walks that control line. I give them the control and respect they deserve but I structure the session and guide it. I act as their cheerleader, their strategist to help them find a way to succeed with a food and have more control when eating. I want to help my kids feel safe at the table and to eat food with enjoyment.
I think what was truly magical at our course with Marsha Dunn Klein was watching her engage these children on her videos in such a respectful, supportive manner. The Get Permission approach with Food Chaining is such a powerful tool for kids and their families. I ordered all of Marsha's DVD's for my clinic. (By the way, Marsha has agreed to lecture with Laura and I again. So I am beyond thrilled about that!!!)
Happy Chaining with Permission, My Friends! Cheri
Sunday, December 14, 2008
Road Less Traveled Blog...Check It Out!
Alicia's new blog, "Road Less Traveled" is wonderful. Her website The AutismLife.Com is also a great, great resource. But this one is very encouraging and I am really enjoying it. Alicia and I are so alike, two blogs, websites to manage, addiction to coffee, redheads, fans of the same poets and I so enjoy reading her posts. I learn so much. This blog is about the walk down that road when autistic spectrum disorder is part of your life. I have posted a link to it on the right on my blog list. It is more than worth visiting.
Thursday, December 11, 2008
Food Chaining: Finding Success and Moving From There
A food refusal is a gift. An opportunity in the right hands to learn and add to your feeding program.
It gives you the chance to learn and study where feeding is breaking down for the child and to analyze the food. I had a great session with one of my older patients yesterday. He is my super-taster, super-sensory patient (see Perception post) and as I have sensory processing disorder myself, he and I click. I am learning so much from him, but I am also finding that I am starting to know what his reaction is going to be before he shows it to me. He so reminds me of Vaughn, Alicia's son. Vaughn rates many, many foods as "sad."
My patient yesterday told me that one brand of cereal smells like his sister's dirty diaper...after smelling it myself many times, I could see where he was going. One aroma of that food was a sweet smell and the other had a very different smell. Some of my other kids have told me bran type flakes smell like dirt. I see my little friend shudder and turn pale when he perceives the aroma of some of these foods. Why do we all think kids have to be able to talk to communicate these things? My patient is extremely expressive verbally, but I learn from watching his body language, especially his eyes.
We were able to find successes in our session, but I learned the most about him yesterday from his food refusals. Too many therapists can't problem solve from there and simply in their minds, check that food off as a rejection and go no farther. We kept exploring and modifying and my patient rated a food as a -50,000 million (oh those rating scales were a moment of genius for yours truly...if you aren't using the rating scales...you are NOT Food Chaining) and by the end of the session, teaching about food, breaking it down...he rated it a 4 on the child Food Chaining scales 1-5 scales, 5 being the best.
When anything falls apart, when you fall flat on your face, when you make a mistake, take that moment, put emotion aside and learn from it. Then every day, you will get better at this. Don't be afraid to have a "bad session"...just treat the child with respect. You may offer a food that he hates, but use the rating scales to find foods that he is highly likely to accept. Set up success at the table. Mistakes will happen, but they happen to the brave at heart.
It gives you the chance to learn and study where feeding is breaking down for the child and to analyze the food. I had a great session with one of my older patients yesterday. He is my super-taster, super-sensory patient (see Perception post) and as I have sensory processing disorder myself, he and I click. I am learning so much from him, but I am also finding that I am starting to know what his reaction is going to be before he shows it to me. He so reminds me of Vaughn, Alicia's son. Vaughn rates many, many foods as "sad."
My patient yesterday told me that one brand of cereal smells like his sister's dirty diaper...after smelling it myself many times, I could see where he was going. One aroma of that food was a sweet smell and the other had a very different smell. Some of my other kids have told me bran type flakes smell like dirt. I see my little friend shudder and turn pale when he perceives the aroma of some of these foods. Why do we all think kids have to be able to talk to communicate these things? My patient is extremely expressive verbally, but I learn from watching his body language, especially his eyes.
We were able to find successes in our session, but I learned the most about him yesterday from his food refusals. Too many therapists can't problem solve from there and simply in their minds, check that food off as a rejection and go no farther. We kept exploring and modifying and my patient rated a food as a -50,000 million (oh those rating scales were a moment of genius for yours truly...if you aren't using the rating scales...you are NOT Food Chaining) and by the end of the session, teaching about food, breaking it down...he rated it a 4 on the child Food Chaining scales 1-5 scales, 5 being the best.
When anything falls apart, when you fall flat on your face, when you make a mistake, take that moment, put emotion aside and learn from it. Then every day, you will get better at this. Don't be afraid to have a "bad session"...just treat the child with respect. You may offer a food that he hates, but use the rating scales to find foods that he is highly likely to accept. Set up success at the table. Mistakes will happen, but they happen to the brave at heart.
Sunday, December 7, 2008
Tales from Atlanta
If you want lots of giggles and the Behind the Scenes, actual events of our course in Atlanta, go to my blog (link below on blog list) A Day in the Life with Cheri, Randy and Luke...
We had a wonderful time and it was such an honor to speak with Marsha Dunn Klein. A real highlight of my career!!! Happy Holidays everyone!
We had a wonderful time and it was such an honor to speak with Marsha Dunn Klein. A real highlight of my career!!! Happy Holidays everyone!
Wednesday, November 26, 2008
The Best Day...
Today I was at work and I was paged up to the front desk. There was a beautiful, large bouquet of flowers. I looked at the card and teared up. The card said, "Thank you for loving me one year ago today, Love, "Your Boy" Alex."
I met "my boy", my little love Alex right after Thanksgiving last year after he spent his first major holiday in the hospital with aspiration pneumonia. The first time I held him it took me 50 minutes to help open his chest, control his secretion swallow and regulate his breathing. Fast forward one year...This Monday in therapy I recommended that he eat whipped pumpkin pie, Cool Whip and crumbled pie crust, a mix of Ragu pizza sauce, cottage cheese, fine ground sausage, parmasean cheese-like our own little pizza/italian dish and a whole variety of foods. He drinks small amounts from his cup. The aspiration is gone, now working on increasing liquid intake as tolerated. We still use the g-tube and we thank God we have it. He has come a long, long way in one year. Alex has been a gift to me from day one. He lifts me up every time I see his little face. He is so brave and so wonderful to treat. If you want to learn more about my beautiful boy Alex and his wonderful family check out the link on my blog lists (down and to the right) and check out his blog "A New Kind of Normal."
This work we do as therapists is hard and sometimes thankless. Sometimes I am seen as the enemy when I tell a family a child cannot eat. Sometimes parents are very upset by our recommendations, but we try to do the best we can for the child. It is not easy and I am not always up to the task. There are good days and great days and bad days too.
Today was the best day because of a very thoughtful gift given to me from a wonderful family. Thank you so much Adam, Jessica, Joel, Noah and Alex. You all are a gift to me!
I met "my boy", my little love Alex right after Thanksgiving last year after he spent his first major holiday in the hospital with aspiration pneumonia. The first time I held him it took me 50 minutes to help open his chest, control his secretion swallow and regulate his breathing. Fast forward one year...This Monday in therapy I recommended that he eat whipped pumpkin pie, Cool Whip and crumbled pie crust, a mix of Ragu pizza sauce, cottage cheese, fine ground sausage, parmasean cheese-like our own little pizza/italian dish and a whole variety of foods. He drinks small amounts from his cup. The aspiration is gone, now working on increasing liquid intake as tolerated. We still use the g-tube and we thank God we have it. He has come a long, long way in one year. Alex has been a gift to me from day one. He lifts me up every time I see his little face. He is so brave and so wonderful to treat. If you want to learn more about my beautiful boy Alex and his wonderful family check out the link on my blog lists (down and to the right) and check out his blog "A New Kind of Normal."
This work we do as therapists is hard and sometimes thankless. Sometimes I am seen as the enemy when I tell a family a child cannot eat. Sometimes parents are very upset by our recommendations, but we try to do the best we can for the child. It is not easy and I am not always up to the task. There are good days and great days and bad days too.
Today was the best day because of a very thoughtful gift given to me from a wonderful family. Thank you so much Adam, Jessica, Joel, Noah and Alex. You all are a gift to me!
December 5 and 6th-Atlanta
Well, it is finally here. Next week, we go to Atlanta and put on a course with Marsha Dunn Klein. I want to pinch myself. Marsha is in the realm of big kahuna of feeding therapy and I trained using all her books. Marsha writes with Suzanne Evans Morris and that is about as big as you can get. This is so neat. I am a bit star struck. Ha!
We have put together a real powerhouse course with about 99.9% focus on treatment using the best of Food Chaining and her Get Permission approach to understand food refusal. It is also going to focus on developing your skills as a diagnostician and making judgment calls about when and how to intervene. Lots of videotape and audience interaction. I love these meeting of the minds and I am excited because I am going to learn and teach. If you want to get away from work, come see us in Atlanta. If you do, come up and say hi my blogger friends!
Have a great Thanksgiving everyone!
We have put together a real powerhouse course with about 99.9% focus on treatment using the best of Food Chaining and her Get Permission approach to understand food refusal. It is also going to focus on developing your skills as a diagnostician and making judgment calls about when and how to intervene. Lots of videotape and audience interaction. I love these meeting of the minds and I am excited because I am going to learn and teach. If you want to get away from work, come see us in Atlanta. If you do, come up and say hi my blogger friends!
Have a great Thanksgiving everyone!
Tuesday, November 18, 2008
Feeding Aversion: Perception
Hi. I saw a wonderful little boy in clinic yesterday. He was extremely bright and insightful and had an amazing way of describing his perception of food and his experiences, both good and bad, with food. Needless to say, what he feels is not what I feel when eating or what you feel or what some other child feels, it is unique to him. He has found foods that work for him and that do not hurt his mouth. "Hurt" is as close to what word is available to me to describe what he feels. His perception is in the realm of pain and refers to things that cause discomfort like colored sugar crystals on a banana or a popcorn hull making him hurt for days. He has protected himself with a big wall and eats what he eats for a reason.
He is not choosing to be selective in his eating, he HAS to be selective in his eating. Take a few minutes and process that statement...
His mom has really done everything she can do and has helped him eat new and very challenging foods. I was very impressed. It makes me sad though, that the table for him is such a challenge. I look forward to eating every day. I wish I could give that gift to him, I will try. The school is so difficult he can't even eat a strong favorite food there. There are so many kids unlike this little boy, who can't tell me how food makes them feel. With my newest little friend, I have the gift of his unbelievable expressive language skills and I will hear him when he talks to me. I will try to perceive the message and act accordingly. I urge all of you, parents and therapists, to take the time to ask questions and listen to the answers, put down your perception of food and try to see what the child in front of you is feeling. Work to find those foods that give a sense of pleasure and peace at the table. Build off of that foundation.
Happy Chaining! Cheri
He is not choosing to be selective in his eating, he HAS to be selective in his eating. Take a few minutes and process that statement...
His mom has really done everything she can do and has helped him eat new and very challenging foods. I was very impressed. It makes me sad though, that the table for him is such a challenge. I look forward to eating every day. I wish I could give that gift to him, I will try. The school is so difficult he can't even eat a strong favorite food there. There are so many kids unlike this little boy, who can't tell me how food makes them feel. With my newest little friend, I have the gift of his unbelievable expressive language skills and I will hear him when he talks to me. I will try to perceive the message and act accordingly. I urge all of you, parents and therapists, to take the time to ask questions and listen to the answers, put down your perception of food and try to see what the child in front of you is feeling. Work to find those foods that give a sense of pleasure and peace at the table. Build off of that foundation.
Happy Chaining! Cheri
Friday, October 24, 2008
Eating in a Sleep State
Blogger was not working yesterday afternoon, so this one had to wait until this morning.
I have treated and been treating several children who do this and it tends to follow a pattern. This usually started in infancy. Feeding is a very sensory act and sometimes it is not pleasant. The baby may be overstimulated by the environment paired with the demands of eating and may also have some type of challenge with the swallow. There is a success getting the baby to eat in this semi-sleep state. The baby can get the feeding down without feeling unsafe and the parent does not have to fight an infant turning away and waving arms at the bottle. Many of these babies will take a pacifier awake but not a bottle. So what is one to do? Most go ahead and keep trying to sleep feed because that is the one way to empty a bottle and feel like the baby has at least eaten something. The hard part is what happens as a baby gets older? They sleep less. Sleep eating as an infant is a huge sensory system red flag. For some reason the baby is not tolerating the feeding and shutting down to sleep mode.
Where is success level with a feeding act in an awake state? At the level of the pacifier. So what do we do? We have used the Hazelbaker finger feeder from Medela (tubing attached to pacifier nipple) and worked on tiny swallows of liquid awake, upright with pacifier. We clamp it off over and over again until the baby can tolerate a tiny trickle of liquid to swallow in an awake state. The parent can't just cold turkey sleep feeds, but we may try to have the baby fed in a more brightly lit room or with some more stimulation (music playing, TV) as we work toward increasing amount taken.
I have seen this persist into toddlerhood/childhood. The kids usually still take a bottle at age 2 or 3 years and drink asleep. They may sip from a cup but not take very much. Swallow study is needed even at the level of a few sips or single swallows, flavor the barium too or the child will completely refuse. These kids tend spoon feed awake and usually need to be completely zoned out by a TV or very distracting environment. They usually don't self feed, parent feeds them. This leads to more and more delays. Parents live around the child's sleep schedule to try to get the child to eat. The more you eat this way the deeper this pattern becomes. But this is truly desperation mode. The zoned out eating of solids is usually like eating on auto-pilot (as we do at a movie with a huge tub of popcorn).
What do you do? These children need to be evaluated and treated by a skilled sensory trained (hopefully certified) pediatric occupational therapist to work on tolerance of sensory stimulation. See sensory chapter in the Food Chaining book for more on this (get it from Amazon or have your library order it for you)type of evaluation and treatment. We teach the kids about eating awake. We modify feedings based on each child's needs, but a lot of the kids respond to very flavorful and high sensory foods. Usually not the slimy, ooey gooey stuff, I have had kids love banana peppers, onions, pickles, spicy sausage, etc in small amounts awake and we build from there.
Each child is different and there may be other reasons for this to occur, but just wanted to share some ideas for those struggling with this difficult problem.
I have treated and been treating several children who do this and it tends to follow a pattern. This usually started in infancy. Feeding is a very sensory act and sometimes it is not pleasant. The baby may be overstimulated by the environment paired with the demands of eating and may also have some type of challenge with the swallow. There is a success getting the baby to eat in this semi-sleep state. The baby can get the feeding down without feeling unsafe and the parent does not have to fight an infant turning away and waving arms at the bottle. Many of these babies will take a pacifier awake but not a bottle. So what is one to do? Most go ahead and keep trying to sleep feed because that is the one way to empty a bottle and feel like the baby has at least eaten something. The hard part is what happens as a baby gets older? They sleep less. Sleep eating as an infant is a huge sensory system red flag. For some reason the baby is not tolerating the feeding and shutting down to sleep mode.
Where is success level with a feeding act in an awake state? At the level of the pacifier. So what do we do? We have used the Hazelbaker finger feeder from Medela (tubing attached to pacifier nipple) and worked on tiny swallows of liquid awake, upright with pacifier. We clamp it off over and over again until the baby can tolerate a tiny trickle of liquid to swallow in an awake state. The parent can't just cold turkey sleep feeds, but we may try to have the baby fed in a more brightly lit room or with some more stimulation (music playing, TV) as we work toward increasing amount taken.
I have seen this persist into toddlerhood/childhood. The kids usually still take a bottle at age 2 or 3 years and drink asleep. They may sip from a cup but not take very much. Swallow study is needed even at the level of a few sips or single swallows, flavor the barium too or the child will completely refuse. These kids tend spoon feed awake and usually need to be completely zoned out by a TV or very distracting environment. They usually don't self feed, parent feeds them. This leads to more and more delays. Parents live around the child's sleep schedule to try to get the child to eat. The more you eat this way the deeper this pattern becomes. But this is truly desperation mode. The zoned out eating of solids is usually like eating on auto-pilot (as we do at a movie with a huge tub of popcorn).
What do you do? These children need to be evaluated and treated by a skilled sensory trained (hopefully certified) pediatric occupational therapist to work on tolerance of sensory stimulation. See sensory chapter in the Food Chaining book for more on this (get it from Amazon or have your library order it for you)type of evaluation and treatment. We teach the kids about eating awake. We modify feedings based on each child's needs, but a lot of the kids respond to very flavorful and high sensory foods. Usually not the slimy, ooey gooey stuff, I have had kids love banana peppers, onions, pickles, spicy sausage, etc in small amounts awake and we build from there.
Each child is different and there may be other reasons for this to occur, but just wanted to share some ideas for those struggling with this difficult problem.
Thursday, October 23, 2008
Conference Schedules, Many Options, What Do You Think?
Hi, we are playing around with schedules for our conferences. Due to requests from some participants, we are trialing Thursday-Friday vs Friday-Saturday courses and in Canada, we, for the first time, trialed one slightly longer day and early dismissal at 2pm. We did work through lunch the second day, but provided a sit down lunch day one (50.00 per person, it was nice), two snacks and both breakfast and a small snack/break at noon the second day. They did not get drinks at noon break and I thought that was a mistake. Hosts were trying to keep costs down for the course as much as possible and food really, really adds up. I thought we should have let them eat on their own day one and provide a boxed lunch day 2. Some people don't like boxed lunch, so it is hard. Anyway, some people loved it and some didn't care, and some really hated it. One lady thought we stopped early because of our flights, no, no, no...we never do that and never would do that. The schedule was set way ahead of time. Majority liked it in both our audience and Dr. Burns audience.
So here are some of the pluses and minuses and I would love to hear from people to see what they would like or comment to Mr. Moreau on www.cepauniversity.com...
Thursday-Friday-no child care issues for participants on the weekend, still have a weekend with this schedule. If you are local, good for picking up kids from school on Friday, bad on Thursday. Hotel needed Wednesday and Thursday.
Friday-Saturday-only one day off work for most participants, can make it more of a vacation through the holiday if needed, no rushed feeling. Hotel needed for Thursday, Friday and Saturday many times.
Long day-short day-usually able to find a flight home on Friday, do not need to stay in a hotel an additional night, early enough to travel home and if driving, miss rush hour traffic. Bad part is it is a long day and you may be hungry, especially as we are talking about food. Some participants may have special dietary needs, but we encourage you to pack something in your bag...still it is hard not to have a longer break.
Longer first day...traffic can be a problem later in the day or childcare can be an issue too, so as you can see it is both sides of the coin here.
Another option is an 8-4 day with dinner break and return for 6-9pm talk that evening. Followed by a 8-12 second day and early dismissal. But some people are wiped out by that and don't have the opportunity to get away and have some fun. All work, no play makes an angry audience of hungry women (and a few guys). Scary! :)
What do you think is best? I would love to know!
So here are some of the pluses and minuses and I would love to hear from people to see what they would like or comment to Mr. Moreau on www.cepauniversity.com...
Thursday-Friday-no child care issues for participants on the weekend, still have a weekend with this schedule. If you are local, good for picking up kids from school on Friday, bad on Thursday. Hotel needed Wednesday and Thursday.
Friday-Saturday-only one day off work for most participants, can make it more of a vacation through the holiday if needed, no rushed feeling. Hotel needed for Thursday, Friday and Saturday many times.
Long day-short day-usually able to find a flight home on Friday, do not need to stay in a hotel an additional night, early enough to travel home and if driving, miss rush hour traffic. Bad part is it is a long day and you may be hungry, especially as we are talking about food. Some participants may have special dietary needs, but we encourage you to pack something in your bag...still it is hard not to have a longer break.
Longer first day...traffic can be a problem later in the day or childcare can be an issue too, so as you can see it is both sides of the coin here.
Another option is an 8-4 day with dinner break and return for 6-9pm talk that evening. Followed by a 8-12 second day and early dismissal. But some people are wiped out by that and don't have the opportunity to get away and have some fun. All work, no play makes an angry audience of hungry women (and a few guys). Scary! :)
What do you think is best? I would love to know!
Sunday, October 19, 2008
Thickened Feedings for Infants and Children: Moved this to a larger post as I have rocked the world of too many therapists
Thickening: For More On Pediatric Dysphagia, See the Cochrane Reviews http://www3.interscience.wiley.com/cgi-bin/mrwhome/106568753/HOME
Controversial subject! How thick do you go? Don't we as therapists thicken liquids as one of our big guns of feeding therapy?
Here are some of my thoughts. I think thickening is not doing therapy. Now, don't get all crazy yet. It is a COMPENSATORY measure, not TREATMENT of the problem which is swallowing thin liquids. You are moving in the right direction, but not getting to the heart of the problem. It has it's place but you must always worry about aspirating thickened material in the lungs or having thickened feeds come back up and be aspirated as gastric content.
Still reeling? OK, say, I want to go to Cincinnati and you give me a map that takes me to Cleveland. I get there and say, "Hey, I asked to go to Cincinnati" and you say, "Don't worry at least you are in Ohio." Yes the child is eating. But I am not happy with Cleveland. No offense, Cleveland. But I digress, I am glad you are in Ohio, but I want to give you the skills to make it all the way to Cincy.
Now swallowing thin liquid is a life skill we want for all our babies. The earlier we work on building those skills the better. I may work on single drops of thin liquid and continue to work up as slowly as needed. I may use pacifier and Hazelbaker Finger feeder or syringe. We do it in a safe manner with a physician's order and understanding of what we are doing. We use our CCCCC's as speechies adding Common Sense and Compassion to the Certificate of Clinical Competence. If I am dealing with a child with a challenge such as a craniofacial problem or Cerebral Palsy, I am going to use thickened liquid and the best products/positioning and pacing strategies I know to keep the child safe. But I am going to work on the skills to refine them as much as possible. I am going to look hard at nutrition and hydration.
Our position is that we work on thin liquids with a slow flow nipple, paired with positioning modifications (side tilt may work) and external pacing of the feeding before ever considering thickening. Nectar is as thick as I will go for babies, but only after I have worked on skills to handle thin liquids. When I do thicken liquids, I always continue to work on moving to thin over the course of treatment via a Pre-Chaining program and beyond. I monitor every session via cervical auscultation of the swallow. If you are treating infants, don't go thin immediately and hurt the baby, work TOWARD thin as tolerated. If you thicken, don't thicken and walk away and think you got the child there. Keep working, thicken and gradually work down to thin as tolerated. Keep working with a focus on the oral skills you need to develop. Strengthening oral skills, improving bolus formulation and control, working on trigger of the swallow with slightly cool temp liquids may help.
Honey thickened liquids for infants are a huge concern from both a nutritional and oral motor/swallowing perspective. Does a baby have a swallow that is capable of clearing liquid of this consistency over the course of 8-12 daily feedings? Never thicken liquids without a swallow study to show that the baby is safe for this consistency of liquid.
If Honey is Not Recommended, What Then, A Tube?
Most parents are very distressed by the thought of a tube. You need to educate the family and help them consider all the pluses and minuses of nasogastric and gastric tubes. Nutrition the first three years of life is vital. Take time, talk to your families, set goals together and help them through these difficult times. If you have a plan it is very helpful to see the progression toward safe oral intake. Most of my patients eat better with a g-tube and they make progress in all areas (sensory, fine and gross motor, sleep, stooling, health). But it is not easy.
So in the meantime, when I have to thicken, what should I use? Simply Thick/Hydra Aid/Thick-It/Thick Em Up or Cereal?
If you chose to use Simply Thick it must be whisked, not shaken. There are concerns now regarding the preservative sodium benzoate in this thickener (see articles). We need to know more about this. We do not use Simply Thick in a g-tube for reflux. In our practice, we do not use Thick-It or Thick Em Up with our pediatric population. Cereal is not the answer for reflux. To reduce reflux, cereal must be so thick an infant cannot consume it. We generally use about 1/2 tsp blenderized rice cereal per each ounce of liquid for our babies. With kids, we are very creative about thickening and sometimes come up with our own yummy blends in smoothies and shakes. Many caloric supplements are already at a nectar consistency and so are drinkable yogurts. With kids, I may add carbonation via small amounts of ice cream floats, to work on trigger of the swallow using both carbonation and cold temperature. I may do small cold water trials with lemon juice in tiny amounts. It depends of the needs of the child.
Blenderized rice cereal
This is an option if you want to help the child with bolus control and airway protection as you work toward thinner consistencies. This means you put dry cereal in a blender or food processor and pulse it a few seconds to crush the flakes to a fine powder. This will often mix better and not clog the nipple.
What about Air Ingestion?
Often air ingestion is a contributing factor to reflux. The Dr. Brown products help reduce air intake significantly. We also like the Parent's Choice nipples (can be used on the Dr Brown bottle too) to help seal the mouth better while feeding. Finding a nipple that provides optimal lip seal for the infant also helps reduce air intake and helps the infant control liquid and swallow more efficiently. The Dr Brown also flows about a beat slower and may also help protect the airway. Laser cut nipples (hole in the nipple is created by laser in the company) and good silicone mean this product is reliable and flow rate is not variable the way puncture cut nipples are.
Never Cut a Nipple-Use Cereal Nipples Instead
Never, ever, ever, ever, under any circumstances, slit, cut or enlarge the hole of a nipple. The Dr. Brown Y-cut nipple is your best option as it is made for thickened feedings. You do not have to blenderize cereal when using this product. You may also like to use a Parent's Choice 6+, Gerber silicone fast flow nipple, Dr. Brown Level II or Level III nipple for blenderized cereal feedings.
Be Safe- Do A Swallow Study
A swallow study or FEES assessment is required to determine which product is best for the baby or the child you are treating. It is also necessary to repeat the studies as you progressively thin out the feedings. You should limit studies to three a year maximum. Cervical auscultation and observation are very important throughout this process.
Controversial subject! How thick do you go? Don't we as therapists thicken liquids as one of our big guns of feeding therapy?
Here are some of my thoughts. I think thickening is not doing therapy. Now, don't get all crazy yet. It is a COMPENSATORY measure, not TREATMENT of the problem which is swallowing thin liquids. You are moving in the right direction, but not getting to the heart of the problem. It has it's place but you must always worry about aspirating thickened material in the lungs or having thickened feeds come back up and be aspirated as gastric content.
Still reeling? OK, say, I want to go to Cincinnati and you give me a map that takes me to Cleveland. I get there and say, "Hey, I asked to go to Cincinnati" and you say, "Don't worry at least you are in Ohio." Yes the child is eating. But I am not happy with Cleveland. No offense, Cleveland. But I digress, I am glad you are in Ohio, but I want to give you the skills to make it all the way to Cincy.
Now swallowing thin liquid is a life skill we want for all our babies. The earlier we work on building those skills the better. I may work on single drops of thin liquid and continue to work up as slowly as needed. I may use pacifier and Hazelbaker Finger feeder or syringe. We do it in a safe manner with a physician's order and understanding of what we are doing. We use our CCCCC's as speechies adding Common Sense and Compassion to the Certificate of Clinical Competence. If I am dealing with a child with a challenge such as a craniofacial problem or Cerebral Palsy, I am going to use thickened liquid and the best products/positioning and pacing strategies I know to keep the child safe. But I am going to work on the skills to refine them as much as possible. I am going to look hard at nutrition and hydration.
Our position is that we work on thin liquids with a slow flow nipple, paired with positioning modifications (side tilt may work) and external pacing of the feeding before ever considering thickening. Nectar is as thick as I will go for babies, but only after I have worked on skills to handle thin liquids. When I do thicken liquids, I always continue to work on moving to thin over the course of treatment via a Pre-Chaining program and beyond. I monitor every session via cervical auscultation of the swallow. If you are treating infants, don't go thin immediately and hurt the baby, work TOWARD thin as tolerated. If you thicken, don't thicken and walk away and think you got the child there. Keep working, thicken and gradually work down to thin as tolerated. Keep working with a focus on the oral skills you need to develop. Strengthening oral skills, improving bolus formulation and control, working on trigger of the swallow with slightly cool temp liquids may help.
Honey thickened liquids for infants are a huge concern from both a nutritional and oral motor/swallowing perspective. Does a baby have a swallow that is capable of clearing liquid of this consistency over the course of 8-12 daily feedings? Never thicken liquids without a swallow study to show that the baby is safe for this consistency of liquid.
If Honey is Not Recommended, What Then, A Tube?
Most parents are very distressed by the thought of a tube. You need to educate the family and help them consider all the pluses and minuses of nasogastric and gastric tubes. Nutrition the first three years of life is vital. Take time, talk to your families, set goals together and help them through these difficult times. If you have a plan it is very helpful to see the progression toward safe oral intake. Most of my patients eat better with a g-tube and they make progress in all areas (sensory, fine and gross motor, sleep, stooling, health). But it is not easy.
So in the meantime, when I have to thicken, what should I use? Simply Thick/Hydra Aid/Thick-It/Thick Em Up or Cereal?
If you chose to use Simply Thick it must be whisked, not shaken. There are concerns now regarding the preservative sodium benzoate in this thickener (see articles). We need to know more about this. We do not use Simply Thick in a g-tube for reflux. In our practice, we do not use Thick-It or Thick Em Up with our pediatric population. Cereal is not the answer for reflux. To reduce reflux, cereal must be so thick an infant cannot consume it. We generally use about 1/2 tsp blenderized rice cereal per each ounce of liquid for our babies. With kids, we are very creative about thickening and sometimes come up with our own yummy blends in smoothies and shakes. Many caloric supplements are already at a nectar consistency and so are drinkable yogurts. With kids, I may add carbonation via small amounts of ice cream floats, to work on trigger of the swallow using both carbonation and cold temperature. I may do small cold water trials with lemon juice in tiny amounts. It depends of the needs of the child.
Blenderized rice cereal
This is an option if you want to help the child with bolus control and airway protection as you work toward thinner consistencies. This means you put dry cereal in a blender or food processor and pulse it a few seconds to crush the flakes to a fine powder. This will often mix better and not clog the nipple.
What about Air Ingestion?
Often air ingestion is a contributing factor to reflux. The Dr. Brown products help reduce air intake significantly. We also like the Parent's Choice nipples (can be used on the Dr Brown bottle too) to help seal the mouth better while feeding. Finding a nipple that provides optimal lip seal for the infant also helps reduce air intake and helps the infant control liquid and swallow more efficiently. The Dr Brown also flows about a beat slower and may also help protect the airway. Laser cut nipples (hole in the nipple is created by laser in the company) and good silicone mean this product is reliable and flow rate is not variable the way puncture cut nipples are.
Never Cut a Nipple-Use Cereal Nipples Instead
Never, ever, ever, ever, under any circumstances, slit, cut or enlarge the hole of a nipple. The Dr. Brown Y-cut nipple is your best option as it is made for thickened feedings. You do not have to blenderize cereal when using this product. You may also like to use a Parent's Choice 6+, Gerber silicone fast flow nipple, Dr. Brown Level II or Level III nipple for blenderized cereal feedings.
Be Safe- Do A Swallow Study
A swallow study or FEES assessment is required to determine which product is best for the baby or the child you are treating. It is also necessary to repeat the studies as you progressively thin out the feedings. You should limit studies to three a year maximum. Cervical auscultation and observation are very important throughout this process.
Neonatal Conference, MN 2009
Laura and I were just invited to speak at the National Neonatal Conference next year in October. For some reason, these events are always on my wedding anniversary and I end up with Laura instead of Randy! We do get to celebrate our anniversary but always around on of our lectures. Laura and I think that is very funny! I always tell her happy anniversary!
Anyway, we are very excited and honored about invitation to speak at this amazing course and will be studying and pouring over research articles, books and journals to prepare both for the Board Certification of the Swallow exam and as well as the lecture.
Next month, we are off to The North American Society of Pediatric Gastroenterology, Hepatology and Nutrition Conference in beautiful San Diego. We are presenting a poster with Dr. Fishbein about our research study looking at the relationship between GERD and Dysphagia in infants. Just wrapped up two courses and we are very glad to be back in the good ol' US of A and taking a brief break before moving on to our next conferences in Nov and December.
Anyway, we are very excited and honored about invitation to speak at this amazing course and will be studying and pouring over research articles, books and journals to prepare both for the Board Certification of the Swallow exam and as well as the lecture.
Next month, we are off to The North American Society of Pediatric Gastroenterology, Hepatology and Nutrition Conference in beautiful San Diego. We are presenting a poster with Dr. Fishbein about our research study looking at the relationship between GERD and Dysphagia in infants. Just wrapped up two courses and we are very glad to be back in the good ol' US of A and taking a brief break before moving on to our next conferences in Nov and December.
Cochrane Neonatal Review Group (see link to right)
Evidence Based Neonatology-Please visit this website. I have posted a link for easy access. This is a bit of information directly from the site to explain how you can use it in your practice.
I. What are systematic reviews?
"The practice of evidence-based neonatology requires efficient access to up to date, valid evidence concerning the efficacy and safety of treatments. In the field of therapy, effects of only moderate size can be clinically very important and, to be able to detect them, all the available studies must be considered. Avoidance of bias is essential, so assessments of benefits and risks of therapy must be based primarily on evidence from randomized controlled trials.
Busy clinicians, policymakers or patients cannot readily keep abreast of the evidence from individual trials. Moreover, neonatology is a rapidly changing field where there are frequent shifts in the weight of accumulating evidence. Therefore, there is a pressing need for continuously updated reviews of the results of randomized trials. These can provide efficient access to current evidence and avoid a long gap between the time when the efficacy of a treatment has in fact been established and the time when the treatment is routinely recommended.
A systematic review of the results of randomized, controlled trials employs explicit, systematic methods designed to produce unbiased and precise estimates of the effect of a treatment on each of the major outcomes of clinical importance. The term "systematic review" is used to distinguish its explicit methodology from that of a non-systematic review where the methodology of the review process is not made explicit and opinion may be mixed with evidence. The use of statistical methods to aggregate and summarize the results of independent studies (meta-analysis) increases the power to detect treatment effects and can provide more precise estimates of the size of treatment effects than are provided by an individual trial.
The results of such systematic reviews are of importance in informing providers and consumers about the effect of treatments and in identifying priorities for new research.
II. Who prepared these systematic reviews?
The compendium of systematic reviews which is presented here is the work of members of the Cochrane Neonatal Review Group (CNRG) of the Cochrane Collaboration.
The Cochrane Collaboration is an international collaboration of individuals and entities with a mandate to prepare, maintain and disseminate systematic reviews of the effects of health care. Collaborative Review Groups are composed of individuals sharing an interest in an area of health-related care practice. The CNRG is composed of hundreds of individuals (neonatologists, pediatricians, physiotherapists, nursing, nutritionists, statisticians, health science librarians) from many countries around the world. Contact details for the members of the CNRG editorial team are given below. Contact details for the authors of specific reviews are given in the review itself.
Reviews appearing on these web pages are Cochrane Collaboration Reviews which have been or will be published electronically in The Cochrane Library, Cochrane Database of Systematic Reviews.
These systematic reviews were provided by the Cochrane Neonatal Review Group, and are the result of activity sponsored, by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD).
NICHD has placed a high priority on making the work of this collaboration available because of the importance of relaying this information to health care professionals and to the public."
For more information concerning this site, please contact:
Mrs. Diane Haughton, Cochrane Neonatal Review
Group Coordinator
Department of Pediatrics, Room 3N11F
McMaster University
1200 Main Street West
Hamilton, Ontario L8N 3Z5
Canada
Telephone: 1 905 525-9140 ext. 22897
Fax: 1 905 521 5007
E-mail: haughton@mcmaster.ca
I. What are systematic reviews?
"The practice of evidence-based neonatology requires efficient access to up to date, valid evidence concerning the efficacy and safety of treatments. In the field of therapy, effects of only moderate size can be clinically very important and, to be able to detect them, all the available studies must be considered. Avoidance of bias is essential, so assessments of benefits and risks of therapy must be based primarily on evidence from randomized controlled trials.
Busy clinicians, policymakers or patients cannot readily keep abreast of the evidence from individual trials. Moreover, neonatology is a rapidly changing field where there are frequent shifts in the weight of accumulating evidence. Therefore, there is a pressing need for continuously updated reviews of the results of randomized trials. These can provide efficient access to current evidence and avoid a long gap between the time when the efficacy of a treatment has in fact been established and the time when the treatment is routinely recommended.
A systematic review of the results of randomized, controlled trials employs explicit, systematic methods designed to produce unbiased and precise estimates of the effect of a treatment on each of the major outcomes of clinical importance. The term "systematic review" is used to distinguish its explicit methodology from that of a non-systematic review where the methodology of the review process is not made explicit and opinion may be mixed with evidence. The use of statistical methods to aggregate and summarize the results of independent studies (meta-analysis) increases the power to detect treatment effects and can provide more precise estimates of the size of treatment effects than are provided by an individual trial.
The results of such systematic reviews are of importance in informing providers and consumers about the effect of treatments and in identifying priorities for new research.
II. Who prepared these systematic reviews?
The compendium of systematic reviews which is presented here is the work of members of the Cochrane Neonatal Review Group (CNRG) of the Cochrane Collaboration.
The Cochrane Collaboration is an international collaboration of individuals and entities with a mandate to prepare, maintain and disseminate systematic reviews of the effects of health care. Collaborative Review Groups are composed of individuals sharing an interest in an area of health-related care practice. The CNRG is composed of hundreds of individuals (neonatologists, pediatricians, physiotherapists, nursing, nutritionists, statisticians, health science librarians) from many countries around the world. Contact details for the members of the CNRG editorial team are given below. Contact details for the authors of specific reviews are given in the review itself.
Reviews appearing on these web pages are Cochrane Collaboration Reviews which have been or will be published electronically in The Cochrane Library, Cochrane Database of Systematic Reviews.
These systematic reviews were provided by the Cochrane Neonatal Review Group, and are the result of activity sponsored, by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD).
NICHD has placed a high priority on making the work of this collaboration available because of the importance of relaying this information to health care professionals and to the public."
For more information concerning this site, please contact:
Mrs. Diane Haughton, Cochrane Neonatal Review
Group Coordinator
Department of Pediatrics, Room 3N11F
McMaster University
1200 Main Street West
Hamilton, Ontario L8N 3Z5
Canada
Telephone: 1 905 525-9140 ext. 22897
Fax: 1 905 521 5007
E-mail: haughton@mcmaster.ca
Thursday, October 16, 2008
Eo zino what? Dealing with and saying Eosinophilic Esophagitis
You know, I remember the day that I sent Cheri a video of Ewan and Stacey during a therapy session. Poor Ewan didn't want to drink, couldn't handle his chest even being touched, and then after drinking some water for the session (it was about swallowing) the poor kid upchucked all over my favorite sweater. I remember Cheri sending me a message that, "Hey this looks like an esophagitis, maybe we should check for Eosinophilic Esophagitis or other problems." I remember thinking, okay I can figure out the esophagitis part and I could figure out the eosinophilic part--I did take Latin after all--but for the life of me I couldn't figure out how those two words fit together.
After Ewan was diagnosed with Eosinophilic Esophagitis (this could be the new tongue twister to replace Peter Piper Picked A Pepper) I remember trotting off to the see the multi-talented Miss Sibyl. For those of you who don't know, Sibyl Cox is the ultra fabulous dietician for this feeding team. My husband and I were scared to death about what we had read and heard about with eosinophilic esophagitis. One website listed it as one of those RARE disorders with basically no information out there about it. Other websites had more information but still very scary to newbies like us. It sounds silly but my husband and I were just certain that Sibyl was going to get rid of corn products, which meant corn syrup, which translated into no Sprite or practically any other food in the supermarket.
After meeting with Sibyl, she did not say no corn, but she did say no Dairy, Eggs, Wheat, Soy, Peanuts, Tree Nuts, Fish, or Shellfish for 8 weeks. I was thankful for the corn but holy cow if you take all that other stuff away--what the heck are we going to feed this kid for 8 weeks? It was like going out into the Atlantic Ocean with a canoe and no paddles. The first trip to the supermarket felt like someone had given me Mission Impossible.
I always say the worst part about any dietary managment kind of disorder or disease is going to the grocery store the very first time. I think it should be mandated by law that families get to take a veteran food allergy shopper with them that first time. I think I spent about 3 1/2 hours in the store that first night. And I'm here to tell you I felt like everyone in the market was staring at me because I was staring at each and every label and swearing under my breath every time I thought it would be an acceptable food. You swear when you read through the whole label only to get to the VERY end and see one of those top 8 foods. Damn! There's an egg product. Damn! There's whey--stupid whey--what the heck is whey anyway? There's another tongue twister--this disorder is full of them!
But we got through it. Maybe with more gray hairs and a little less weight, but I remember one of the photos I took of Ewan during that time period with no eggs, no dairy, no peanuts, no tree nuts, no wheat, no soy, and no fish or shellfish (as if)--and that kid looked so healthy. Beautiful clear eyes and face--just glowed with health. The very thing that his body needed to run that engine was also the very thing that was making him sick. What a horrible crappy twist of fate that eosinophilic disorder has turned out to be for some of those who have it.
But it is manageable. It takes time, it takes a lot of energy, it takes more doctor trips and outpatient surgeries than anyone would care to do, and it takes patience because of all the ups and downs. My son knew the anesthesiologists and nurses, the route we took to the hospital, and what kind of flavor he wanted his anesthesia mask to be. He was furious with Dr. Fishbein for taking his milk away--by the way Dr. F, he still blames you for that! The other day Ewan asked if he could be a doctor when he grows up. I said, "Ewan, you can be ANYTHING that you want to be but why do you want to be a doctor?" He said, "So I can look inside and say that I am NOT allergic to milk." Nice try buddy, but I don't think they let doctors scope themselves!!! ;)
I've come to realize that while the diet can control a lot for Ewan, there's a lot that we cannot control. There's still something about those seasonal allergies that can mess him up. There's still something about those minor colds that can turn into weeks of crappy swallowing. There's still something about that stinking reflux that can cause those day long hiccup spells. But they are fewer and fewer nowadays and we are learning to look for misslabled or misgiven foods and to keep the windows closed and the carpets swept with the fancy smancy vacuum cleaner.
For those of you who know someone struggling with eosinophilic disorder or a parent who is struggling to cope with the demands and stress--be patient while they try and spit out that name--Eosinophilic Esophagitis or Eosinophilic enteritis and Eosinophilic gastroenteritis, or...what the heck I like ED for eosinophilic disorder--but too often people think I'm talking about Erectile Dysfunction! Ooops, that won't work!
Just some thoughts I have today so Happy Chaining everyone and for those you dealing with ED (no NOT that one!) happy shopping!
Alicia
After Ewan was diagnosed with Eosinophilic Esophagitis (this could be the new tongue twister to replace Peter Piper Picked A Pepper) I remember trotting off to the see the multi-talented Miss Sibyl. For those of you who don't know, Sibyl Cox is the ultra fabulous dietician for this feeding team. My husband and I were scared to death about what we had read and heard about with eosinophilic esophagitis. One website listed it as one of those RARE disorders with basically no information out there about it. Other websites had more information but still very scary to newbies like us. It sounds silly but my husband and I were just certain that Sibyl was going to get rid of corn products, which meant corn syrup, which translated into no Sprite or practically any other food in the supermarket.
After meeting with Sibyl, she did not say no corn, but she did say no Dairy, Eggs, Wheat, Soy, Peanuts, Tree Nuts, Fish, or Shellfish for 8 weeks. I was thankful for the corn but holy cow if you take all that other stuff away--what the heck are we going to feed this kid for 8 weeks? It was like going out into the Atlantic Ocean with a canoe and no paddles. The first trip to the supermarket felt like someone had given me Mission Impossible.
I always say the worst part about any dietary managment kind of disorder or disease is going to the grocery store the very first time. I think it should be mandated by law that families get to take a veteran food allergy shopper with them that first time. I think I spent about 3 1/2 hours in the store that first night. And I'm here to tell you I felt like everyone in the market was staring at me because I was staring at each and every label and swearing under my breath every time I thought it would be an acceptable food. You swear when you read through the whole label only to get to the VERY end and see one of those top 8 foods. Damn! There's an egg product. Damn! There's whey--stupid whey--what the heck is whey anyway? There's another tongue twister--this disorder is full of them!
But we got through it. Maybe with more gray hairs and a little less weight, but I remember one of the photos I took of Ewan during that time period with no eggs, no dairy, no peanuts, no tree nuts, no wheat, no soy, and no fish or shellfish (as if)--and that kid looked so healthy. Beautiful clear eyes and face--just glowed with health. The very thing that his body needed to run that engine was also the very thing that was making him sick. What a horrible crappy twist of fate that eosinophilic disorder has turned out to be for some of those who have it.
But it is manageable. It takes time, it takes a lot of energy, it takes more doctor trips and outpatient surgeries than anyone would care to do, and it takes patience because of all the ups and downs. My son knew the anesthesiologists and nurses, the route we took to the hospital, and what kind of flavor he wanted his anesthesia mask to be. He was furious with Dr. Fishbein for taking his milk away--by the way Dr. F, he still blames you for that! The other day Ewan asked if he could be a doctor when he grows up. I said, "Ewan, you can be ANYTHING that you want to be but why do you want to be a doctor?" He said, "So I can look inside and say that I am NOT allergic to milk." Nice try buddy, but I don't think they let doctors scope themselves!!! ;)
I've come to realize that while the diet can control a lot for Ewan, there's a lot that we cannot control. There's still something about those seasonal allergies that can mess him up. There's still something about those minor colds that can turn into weeks of crappy swallowing. There's still something about that stinking reflux that can cause those day long hiccup spells. But they are fewer and fewer nowadays and we are learning to look for misslabled or misgiven foods and to keep the windows closed and the carpets swept with the fancy smancy vacuum cleaner.
For those of you who know someone struggling with eosinophilic disorder or a parent who is struggling to cope with the demands and stress--be patient while they try and spit out that name--Eosinophilic Esophagitis or Eosinophilic enteritis and Eosinophilic gastroenteritis, or...what the heck I like ED for eosinophilic disorder--but too often people think I'm talking about Erectile Dysfunction! Ooops, that won't work!
Just some thoughts I have today so Happy Chaining everyone and for those you dealing with ED (no NOT that one!) happy shopping!
Alicia
Thursday, October 9, 2008
Just give me the can...
In response to Cheri's last post about the corn, the psychologist, and the trash can this is what I have to say:
Imagine 10 years down the road and this young lad is taking his date out to a restaurant. He gives the hostess his name and she says, "Sir would you like a seat by the window or by the bar?" The young lad then replies, "Oh well, actually, I was hoping for a seat next to the trash can in case I need to throw up my corn."
Let's say it together everyone--FUNCTIONAL. Think FUNCTIONAL all the time and don't forget that the first three letters are F-U-N!
Happy Chaining and for the love of all that's holy get rid of the upchuck cans,
Alicia
Imagine 10 years down the road and this young lad is taking his date out to a restaurant. He gives the hostess his name and she says, "Sir would you like a seat by the window or by the bar?" The young lad then replies, "Oh well, actually, I was hoping for a seat next to the trash can in case I need to throw up my corn."
Let's say it together everyone--FUNCTIONAL. Think FUNCTIONAL all the time and don't forget that the first three letters are F-U-N!
Happy Chaining and for the love of all that's holy get rid of the upchuck cans,
Alicia
Food Chaining: Cheri's Fun Version of Feeding Therapy
I just listened to a lecture by a psychologist about her method of feeding therapy. Basically, she forces kids (with autism too) to eat food. She talked about pushing this poor kid to eat corn. She made him do it. He said he was going to throw up. He was gagging and retching. She said that she told him she didn’t care if he vomited and put a garbage can on the table.
Anyone hungry after that?
I am sorry, but I think there is a much better way. I have several questions, first, why corn? How did you select that food? Why make him vomit it up? That is a devastating thing to some children and terrifying to others. Is it truly and simply a control issue? That is what she claims and I agree, but it is her control issue, not his. We always need to be asking ourselves how we can do this better and keep functional outcomes in mind. There should also be a variety of approaches for all children.
I think it is much more than control and breaking a child's resistance. They almost always have a legitimate complaint and refuse for a reason. Yes she pushed him so hard he ate five kernels of corn in her session, but will he ever eat it again on his own? What will he associate with corn? Bile? I threw up catfish once and I haven't eaten it since. I think this is a method that yes can push kids so hard that they eat something, but then what? As only 3% of children with feeding disorders are purely behavioral, then why is this form of treatment ignoring the complexity of the issue. What about sensory issues? What about giving the child emotional support as he learns to eat? What about the joy and social aspect of food? What about learning about what food is? What if he just hates corn? What about starting at success and making more success? People may scoff at my approach and call me a junk food girl, but you know what, I can make "junk" into so much more. So I thought I would share my recent session plans minus vomiting and retching, to show you why I love what I do.
This is the Food Chaining way…something to consider as we work with children. It can be about food, language, learning, love and laughter...
I am working with a wonderful little boy named Hunter and I don’t know who is having more fun in therapy, Hunter or me. Hunter and I are working to expand his food repertoire. He came to us with no fruits and no vegetables, very few meats and a lot of anxiety about new food. He is beyond cute and every Wednesday morning, we get to explore and play with food. His wonderful parents are just doing a phenomenal job as key parts of the treatment team. Thought I would share some of our activities.
I have a dog puppet that eats that I have ordered from New Visions (sorry I had it as Mealtime Notions first). I call him Starvin’ Marvin. Well, Hunter and I teach Marvin to eat new foods. I have a big basket of play fruits and veggies. You can peel the foods and slice them. Marvin reacts in a variety of ways, positive and negative, to new foods and I usually have Hunter laughing so hard he falls off his chair by the end of our food lesson. We teach Marvin “stretches” from the wonderful Marsha Dunn Klein. When Marvin is under the table growling at us because he doesn’t want to eat, Hunter tells him how to stretch and play with food. He will tell him to hear the food, look at it (I put the puppet right in front of the food staring it down) and to get really brave and touch it. We usually laugh a lot during touches. Marvin touched food with his booty the other day and Hunter had hiccups from giggling so much. We move on to a kiss, lick or taste. Hunter helps Marvin rate new foods and eat colors for a strong, healthy body. Sometimes Marvin eats the food and has a “party in his mouth, number 5” and sometimes he spits it across the room and Hunter collapses in giggles again. Lessons learned and Hunter is relaxed with zero anxiety as we start playing with real food. We then let Marvin nap as he is full of new food.
Last week, we fed Marvin strawberries and Hunter and I cut open Go Tarts with strawberry filling. We sliced it open, used our toothpicks to get a bit out, smelled it and Hunter tasted the filling. He took pieces of crust and frosting off. He liked it and proceeded on his own to eat the entire GoTart. No fear. His mom about fell over. He is now eating NutraGrain bars, GoTarts and he will try strawberry Fig Newtons or paint a tiny amount of strawberry all fruit jam/jelly on toast at home. He explored a chocolate GoTart and combined the strawberry and the chocolate. I told him that some people dip strawberries in chocolate. He is now combining all kinds of foods. We usually work on three different foods each session. He has tried apples, caramel apples, applesauce and pears. We are also working on deli meat each week and Marvin wakes up and tries to eat our food. Again, the giggles come, if there are no giggles in your session, you are doing something wrong. Hunter tried a chicken nugget. He liked it...good, where can I go with that, deli meat, baked chicken and other poultry. So we worked on deli chicken and turkey first as he has liked one type of lunch meat. I am targeting these foods also thinking about Thanksgiving turkey. We used a slice of a Buddig meat that Hunter likes and put tiny amounts of cheese or other deli meats inside, rolled them into rolls and wadded them up into balls and taste them. He has taken that to putting meat and cheese in Fritos (his transitional food) and we made Hunter Fritodillas. We then got the electric skillet out and Hunter helped me cook (and eat) a quesadilla. I asked him to paint a face on one at home with salsa. We played with peas (Dad likes them) and we made light sabers and weights to build our muscles with our peas. We squished and smelled them, but didn’t eat them. That is fine. One pea had a dark spot and Hunter said it looked like it was bleeding. Oh the perception from a child! Why don't we pay attention to that? He did try corn at home, twice and didn’t get upset after the first time, salt really helped. We cooked hash browns and he has gone from chips and fries, to tator tots, hash browns and soon we will try cheesy baked potatoes. We are making fruit smoothies for Marvin and we will make them for ourselves in two weeks when I get back from Iowa and Canada. He has a big poster that we made for all his stickers and ratings for new food. We used Scooby Doo and other food related characters for his sticker chart. He writes what he has eaten and the rating. His chart is almost full. We fill one up and he gets a special treat. But in four sessions, Hunter has tried 30 foods. It was never torture, never scary and his parents are amazed. He is making me a video of his cooking show at home or a commercial for a surprise food he selects to show me how brave he is.
But more than anything, our sessions show respect for this little boy. Isn’t that the most important part of all?
Anyone hungry after that?
I am sorry, but I think there is a much better way. I have several questions, first, why corn? How did you select that food? Why make him vomit it up? That is a devastating thing to some children and terrifying to others. Is it truly and simply a control issue? That is what she claims and I agree, but it is her control issue, not his. We always need to be asking ourselves how we can do this better and keep functional outcomes in mind. There should also be a variety of approaches for all children.
I think it is much more than control and breaking a child's resistance. They almost always have a legitimate complaint and refuse for a reason. Yes she pushed him so hard he ate five kernels of corn in her session, but will he ever eat it again on his own? What will he associate with corn? Bile? I threw up catfish once and I haven't eaten it since. I think this is a method that yes can push kids so hard that they eat something, but then what? As only 3% of children with feeding disorders are purely behavioral, then why is this form of treatment ignoring the complexity of the issue. What about sensory issues? What about giving the child emotional support as he learns to eat? What about the joy and social aspect of food? What about learning about what food is? What if he just hates corn? What about starting at success and making more success? People may scoff at my approach and call me a junk food girl, but you know what, I can make "junk" into so much more. So I thought I would share my recent session plans minus vomiting and retching, to show you why I love what I do.
This is the Food Chaining way…something to consider as we work with children. It can be about food, language, learning, love and laughter...
I am working with a wonderful little boy named Hunter and I don’t know who is having more fun in therapy, Hunter or me. Hunter and I are working to expand his food repertoire. He came to us with no fruits and no vegetables, very few meats and a lot of anxiety about new food. He is beyond cute and every Wednesday morning, we get to explore and play with food. His wonderful parents are just doing a phenomenal job as key parts of the treatment team. Thought I would share some of our activities.
I have a dog puppet that eats that I have ordered from New Visions (sorry I had it as Mealtime Notions first). I call him Starvin’ Marvin. Well, Hunter and I teach Marvin to eat new foods. I have a big basket of play fruits and veggies. You can peel the foods and slice them. Marvin reacts in a variety of ways, positive and negative, to new foods and I usually have Hunter laughing so hard he falls off his chair by the end of our food lesson. We teach Marvin “stretches” from the wonderful Marsha Dunn Klein. When Marvin is under the table growling at us because he doesn’t want to eat, Hunter tells him how to stretch and play with food. He will tell him to hear the food, look at it (I put the puppet right in front of the food staring it down) and to get really brave and touch it. We usually laugh a lot during touches. Marvin touched food with his booty the other day and Hunter had hiccups from giggling so much. We move on to a kiss, lick or taste. Hunter helps Marvin rate new foods and eat colors for a strong, healthy body. Sometimes Marvin eats the food and has a “party in his mouth, number 5” and sometimes he spits it across the room and Hunter collapses in giggles again. Lessons learned and Hunter is relaxed with zero anxiety as we start playing with real food. We then let Marvin nap as he is full of new food.
Last week, we fed Marvin strawberries and Hunter and I cut open Go Tarts with strawberry filling. We sliced it open, used our toothpicks to get a bit out, smelled it and Hunter tasted the filling. He took pieces of crust and frosting off. He liked it and proceeded on his own to eat the entire GoTart. No fear. His mom about fell over. He is now eating NutraGrain bars, GoTarts and he will try strawberry Fig Newtons or paint a tiny amount of strawberry all fruit jam/jelly on toast at home. He explored a chocolate GoTart and combined the strawberry and the chocolate. I told him that some people dip strawberries in chocolate. He is now combining all kinds of foods. We usually work on three different foods each session. He has tried apples, caramel apples, applesauce and pears. We are also working on deli meat each week and Marvin wakes up and tries to eat our food. Again, the giggles come, if there are no giggles in your session, you are doing something wrong. Hunter tried a chicken nugget. He liked it...good, where can I go with that, deli meat, baked chicken and other poultry. So we worked on deli chicken and turkey first as he has liked one type of lunch meat. I am targeting these foods also thinking about Thanksgiving turkey. We used a slice of a Buddig meat that Hunter likes and put tiny amounts of cheese or other deli meats inside, rolled them into rolls and wadded them up into balls and taste them. He has taken that to putting meat and cheese in Fritos (his transitional food) and we made Hunter Fritodillas. We then got the electric skillet out and Hunter helped me cook (and eat) a quesadilla. I asked him to paint a face on one at home with salsa. We played with peas (Dad likes them) and we made light sabers and weights to build our muscles with our peas. We squished and smelled them, but didn’t eat them. That is fine. One pea had a dark spot and Hunter said it looked like it was bleeding. Oh the perception from a child! Why don't we pay attention to that? He did try corn at home, twice and didn’t get upset after the first time, salt really helped. We cooked hash browns and he has gone from chips and fries, to tator tots, hash browns and soon we will try cheesy baked potatoes. We are making fruit smoothies for Marvin and we will make them for ourselves in two weeks when I get back from Iowa and Canada. He has a big poster that we made for all his stickers and ratings for new food. We used Scooby Doo and other food related characters for his sticker chart. He writes what he has eaten and the rating. His chart is almost full. We fill one up and he gets a special treat. But in four sessions, Hunter has tried 30 foods. It was never torture, never scary and his parents are amazed. He is making me a video of his cooking show at home or a commercial for a surprise food he selects to show me how brave he is.
But more than anything, our sessions show respect for this little boy. Isn’t that the most important part of all?
Sodium Benzoate...More Research is Needed. Recent Findings...
See link to the right for additional articles.
SOURCE: J Immunol. 2007 Jul 1;179(1):275-83. Links
Sodium benzoate, a food additive and a metabolite of cinnamon, modifies T cells at multiple steps and inhibits adoptive transfer of experimental allergic encephalomyelitis.
Brahmachari S, Pahan K.
Department of Neurological Sciences, Rush University Medical Center, 1735 West Harrison Street, Chicago, IL 60612, USA.
Experimental allergic encephalomyelitis (EAE) is the animal model for multiple sclerosis. This study explores a novel use of sodium benzoate (NaB), a commonly used food additive and a Food and Drug Administration-approved nontoxic drug for urea cycle disorders, in treating the disease process of relapsing-remitting EAE in female SJL/J mice. NaB, administered through drinking water at physiologically tolerable doses, ameliorated clinical symptoms and disease progression of EAE in recipient mice and suppressed the generation of encephalitogenic T cells in donor mice. Histological studies reveal that NaB effectively inhibited infiltration of mononuclear cells and demyelination in the spinal cord of EAE mice. Consequently, NaB also suppressed the expression of proinflammatory molecules and normalized myelin gene expression in the CNS of EAE mice. Furthermore, we observed that NaB switched the differentiation of myelin basic protein-primed T cells from Th1 to Th2 mode, enriched regulatory T cell population, and down-regulated the expression of various contact molecules in T cells. Taken together, our results suggest that NaB modifies encephalitogenic T cells at multiple steps and that NaB may have therapeutic importance in multiple sclerosis.
PMID: 17579047 [PubMed - indexed for MEDLINE
SOURCE: The Lancet 2007; 370:1560-70 "Food additives and hyperactive behaviour in 3-year-old and 8/9 year-old children in the community a randomised, double-blinded, placebo-controlled trial"Authors: McCann D, Barrett A, Cooper A, Crumpler D, Dalen L, Grimshaw K, et al
"Possible risks from sodium benzoate... Sodium benzoate is used as a preservative in drinks, providing safety and stability for the product. It has proved a controversial additive, as recent studies have highlighted health concerns from its use. However, Coca-Cola insisted the move was not a result of the studies and was keen to point out that both EFSA and the FSA have granted the product safe, and its removal from Diet Coke is simply a response to consumer preferences for natural. A spokesperson said: "We have looked at removing sodium benzoate for a number of years in a move towards having no artificial additives. Our decision is based on emerging consumer trends for natural."Last year, research linked the product to cell damage. The study was conducted by professor Peter Piper from Sheffield University, an expert in molecular biology and biotechnology.He tested benzoate on yeast cells and found the preservative spurred an increase in production of oxygen radicals, or free radicals, which several studies have linked to serious illnesses and ageing in general. Benzoate appeared to attack cells' mitochondria, damaging their ability to prevent oxygen leaks that create free radicals. Yeast cells were used because of their similarity to human ones, but no research on humans has been done.
Additionally, sodium benzoate was present in the Southampton study, which linked additives to hyperactivity in children.In the study, two mixes of additives were given to children. While the European Food Safety Authority (EFSA) decided the study was insufficient to determine a ban on the colours, it has since sparked the UK Food Standards Agency (FSA) to encourage the voluntary removal of the artificial colours from products. Because sodium benzoate was present in both mixes but resulted in different effects on hyperactivity, no recommendations have been made on its removal. However, it has not failed to raise concern in consumers.
Reformulation Coca-cola is not alone in responding to consumer demand for natural, with many manufacturers the aiming for the removal of artificial additives. Major supermarkets, including Asda, Sainsbury's and Tesco, pledged to remove artificial additives from their private label soft drinks last summer, following the furore. Nestle Rowntree promised to remove all artificial colourings from its confectionery in the summer of 2005. At that time, the company reported a 9 per cent increase on sales of Rowntree products, indicating the strategy's popularity amongst consumers. Last month, Cadbury pledged to remove all artificial colourings from its confectionery products by the end of the year in response to concerns over their possible effects on behaviour."
SOURCE: J Immunol. 2007 Jul 1;179(1):275-83. Links
Sodium benzoate, a food additive and a metabolite of cinnamon, modifies T cells at multiple steps and inhibits adoptive transfer of experimental allergic encephalomyelitis.
Brahmachari S, Pahan K.
Department of Neurological Sciences, Rush University Medical Center, 1735 West Harrison Street, Chicago, IL 60612, USA.
Experimental allergic encephalomyelitis (EAE) is the animal model for multiple sclerosis. This study explores a novel use of sodium benzoate (NaB), a commonly used food additive and a Food and Drug Administration-approved nontoxic drug for urea cycle disorders, in treating the disease process of relapsing-remitting EAE in female SJL/J mice. NaB, administered through drinking water at physiologically tolerable doses, ameliorated clinical symptoms and disease progression of EAE in recipient mice and suppressed the generation of encephalitogenic T cells in donor mice. Histological studies reveal that NaB effectively inhibited infiltration of mononuclear cells and demyelination in the spinal cord of EAE mice. Consequently, NaB also suppressed the expression of proinflammatory molecules and normalized myelin gene expression in the CNS of EAE mice. Furthermore, we observed that NaB switched the differentiation of myelin basic protein-primed T cells from Th1 to Th2 mode, enriched regulatory T cell population, and down-regulated the expression of various contact molecules in T cells. Taken together, our results suggest that NaB modifies encephalitogenic T cells at multiple steps and that NaB may have therapeutic importance in multiple sclerosis.
PMID: 17579047 [PubMed - indexed for MEDLINE
SOURCE: The Lancet 2007; 370:1560-70 "Food additives and hyperactive behaviour in 3-year-old and 8/9 year-old children in the community a randomised, double-blinded, placebo-controlled trial"Authors: McCann D, Barrett A, Cooper A, Crumpler D, Dalen L, Grimshaw K, et al
"Possible risks from sodium benzoate... Sodium benzoate is used as a preservative in drinks, providing safety and stability for the product. It has proved a controversial additive, as recent studies have highlighted health concerns from its use. However, Coca-Cola insisted the move was not a result of the studies and was keen to point out that both EFSA and the FSA have granted the product safe, and its removal from Diet Coke is simply a response to consumer preferences for natural. A spokesperson said: "We have looked at removing sodium benzoate for a number of years in a move towards having no artificial additives. Our decision is based on emerging consumer trends for natural."Last year, research linked the product to cell damage. The study was conducted by professor Peter Piper from Sheffield University, an expert in molecular biology and biotechnology.He tested benzoate on yeast cells and found the preservative spurred an increase in production of oxygen radicals, or free radicals, which several studies have linked to serious illnesses and ageing in general. Benzoate appeared to attack cells' mitochondria, damaging their ability to prevent oxygen leaks that create free radicals. Yeast cells were used because of their similarity to human ones, but no research on humans has been done.
Additionally, sodium benzoate was present in the Southampton study, which linked additives to hyperactivity in children.In the study, two mixes of additives were given to children. While the European Food Safety Authority (EFSA) decided the study was insufficient to determine a ban on the colours, it has since sparked the UK Food Standards Agency (FSA) to encourage the voluntary removal of the artificial colours from products. Because sodium benzoate was present in both mixes but resulted in different effects on hyperactivity, no recommendations have been made on its removal. However, it has not failed to raise concern in consumers.
Reformulation Coca-cola is not alone in responding to consumer demand for natural, with many manufacturers the aiming for the removal of artificial additives. Major supermarkets, including Asda, Sainsbury's and Tesco, pledged to remove artificial additives from their private label soft drinks last summer, following the furore. Nestle Rowntree promised to remove all artificial colourings from its confectionery in the summer of 2005. At that time, the company reported a 9 per cent increase on sales of Rowntree products, indicating the strategy's popularity amongst consumers. Last month, Cadbury pledged to remove all artificial colourings from its confectionery products by the end of the year in response to concerns over their possible effects on behaviour."
Friday, October 3, 2008
Cincinnati 2008 Summary
What did we learn in Cincinnati? Oh so much. We love the Pediatric Dysphagia course. This is a great course taught primarily by physicians from the Aerodigestive Feeding Team Clinic at Children's Hospital.
Basically, here are a few highlights:
Simply Thick contains a preservative, sodium benzoate and we are searching for more information about it for our pediatric population. At Children's, they do not thicken feeds for preemies and believe as Laura and I do, that working on thin liquids in a progression the child can handle and using a tube for primary nutrition is the best option. It should never be used in a g-tube as a reflux measure. Thickening has benefits but also has many pitfalls and should be done cautiously.
E-Stim or VitalStim with Infants-conclusion was we do not know the impact on the developing infant's neurological system. There are people using it for up to an hour on babies. The research is still pending but some findings are inconclusive. I expect children I treat to improve in my care, so I am very eagerly looking forward to reading the studies that come out on this subject. There are more long term studies being done by Susan Langmore and her data will be complete in 2011.
Do not underestimate the need to carefully examine the child for structural problems leading to aspiration or feeding difficulties. A thorough ENT examination is so important to the diagnostic process. Also, we cannot underestimate the esophageal stage of the swallow and problems with motility and function of the UES and LES (upper and lower esophageal sphincters). We should all be looking at function of the esophagus in our swallow studies. Not to try to combine a UGI and swallow study, but to assess for problems during feeding and refer for additional assessments if needed.
There was much, much more and we will also share new research studies, etc at our Atlanta course. We will be going back next year for training to do pediatric Fiberoptic Endoscopic Evaluation of the Swallow or FEES studies. Very exciting!
Basically, here are a few highlights:
Simply Thick contains a preservative, sodium benzoate and we are searching for more information about it for our pediatric population. At Children's, they do not thicken feeds for preemies and believe as Laura and I do, that working on thin liquids in a progression the child can handle and using a tube for primary nutrition is the best option. It should never be used in a g-tube as a reflux measure. Thickening has benefits but also has many pitfalls and should be done cautiously.
E-Stim or VitalStim with Infants-conclusion was we do not know the impact on the developing infant's neurological system. There are people using it for up to an hour on babies. The research is still pending but some findings are inconclusive. I expect children I treat to improve in my care, so I am very eagerly looking forward to reading the studies that come out on this subject. There are more long term studies being done by Susan Langmore and her data will be complete in 2011.
Do not underestimate the need to carefully examine the child for structural problems leading to aspiration or feeding difficulties. A thorough ENT examination is so important to the diagnostic process. Also, we cannot underestimate the esophageal stage of the swallow and problems with motility and function of the UES and LES (upper and lower esophageal sphincters). We should all be looking at function of the esophagus in our swallow studies. Not to try to combine a UGI and swallow study, but to assess for problems during feeding and refer for additional assessments if needed.
There was much, much more and we will also share new research studies, etc at our Atlanta course. We will be going back next year for training to do pediatric Fiberoptic Endoscopic Evaluation of the Swallow or FEES studies. Very exciting!
Wednesday, October 1, 2008
Food Chaining Meets the Get Permisson Approach: Come to Atlanta...We will be joined by the wonderful Marsha Dunn Klein
Hi. I am so excited. Laura and I have been blessed. We are going to present with Marsha Dunn Klein, the wonderful occupational therapist who has been a true pioneer in the world of pediatric feeding disorders. Marsha has written most of the books Laura and I trained with and this is so exciting.
When we went to Cincinnati it was funny, people saw us and said, "That's Fraker and Walbert"..but when anyone sees Lala and I, with our wild enormous hairstyles, we are pretty easy to pick out. People were very excited to hear that we were going to present with Marsha. We talked to some great people and learned so much in Cincinnati. I recommend the Pediatric Dysphagia series of lectures to all therapists who work in the feeding realm. Armed with the newest information and research, I am very excited to pull this amazing course together. I don't know if Marsha will be available for other cities, but this is truly an honor.
If you want to come see us, sign up early. This one is going to fill up fast. It is in beautiful Atlanta, Georgia on December 5 and 6th. Contact www.cepauniversity.com to sign up.
When we went to Cincinnati it was funny, people saw us and said, "That's Fraker and Walbert"..but when anyone sees Lala and I, with our wild enormous hairstyles, we are pretty easy to pick out. People were very excited to hear that we were going to present with Marsha. We talked to some great people and learned so much in Cincinnati. I recommend the Pediatric Dysphagia series of lectures to all therapists who work in the feeding realm. Armed with the newest information and research, I am very excited to pull this amazing course together. I don't know if Marsha will be available for other cities, but this is truly an honor.
If you want to come see us, sign up early. This one is going to fill up fast. It is in beautiful Atlanta, Georgia on December 5 and 6th. Contact www.cepauniversity.com to sign up.
Monday, September 22, 2008
GERD and Pediatric Dysphagia: Our New Research Study Accepted at the 2008 NASPGHAN conference!
We are presenting our newest research in San Diego this November at the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition convention. Here is our abstract and some very compelling research!
The Prevalence of Dysphagia in Infantile GERD
Mark Fishbein, MD, Christina Branham, MD, Laura Walbert, CCC/SLP, CLC, Sibyl Cox, RD, LD, CLC, Jenny Mollerud, CCC/SLP, Cheri Fraker, CCC/SLP, CLC
Introduction: Infantile GERD has been linked to feeding disorders with symptoms including feeding aversion, feeding refusal, and arching. Dysphagia, a co-morbidity of infantile GERD, may possess similar symptoms but is often unrecognized. In this investigation, the prevalence of dysphagia in infantile GERD was investigated in referrals to a pediatric GI practice.
Conclusion: Dysphagia is featured prominently in infantile GERD. In this referral population, over one half of subjects underwent feeding evaluation with approximate 80% abnormalities and one quarter underwent VFSS with approximate 90% abnormalities. Risk factors for severe dysphagia include underweight and developmental delay. Antireflux medications are not protective for dysphagia. Greater vigilance is recommended to identify dysphagia in infantile reflux.
The Prevalence of Dysphagia in Infantile GERD
Mark Fishbein, MD, Christina Branham, MD, Laura Walbert, CCC/SLP, CLC, Sibyl Cox, RD, LD, CLC, Jenny Mollerud, CCC/SLP, Cheri Fraker, CCC/SLP, CLC
Introduction: Infantile GERD has been linked to feeding disorders with symptoms including feeding aversion, feeding refusal, and arching. Dysphagia, a co-morbidity of infantile GERD, may possess similar symptoms but is often unrecognized. In this investigation, the prevalence of dysphagia in infantile GERD was investigated in referrals to a pediatric GI practice.
Conclusion: Dysphagia is featured prominently in infantile GERD. In this referral population, over one half of subjects underwent feeding evaluation with approximate 80% abnormalities and one quarter underwent VFSS with approximate 90% abnormalities. Risk factors for severe dysphagia include underweight and developmental delay. Antireflux medications are not protective for dysphagia. Greater vigilance is recommended to identify dysphagia in infantile reflux.
Tuesday, September 16, 2008
Protein Power!
Yes, yes, another post from me...I just couldn't figure out how to fit this into the earlier one!
So Mr. Ewan has been having some ups and downs with behaviors and headaches some revolving around snacks and eating and others revolving around sunlight. On the advice of the doc, we arranged for Ewan to have a snack about every 2 hours at school and at home to keep him on an even keel. It has been somewhat successful but the crash would come back pretty quickly. After talking with Sibyl and Ewan's neurologist we've pushed up the protein in those snacks and meals to keep him from crashing after high. For now we are experimenting with some high protein drinks and some energy bars (difficult to find because of Ewan's milk and egg allergies) but he seems to be doing much, much better with the highs and lows.
We also had to include a migraine medication because the headaches were getting out of control. Hopefully, we will continue to see improvement with both the new snacks and headache meds and see his appetite, stomach cramping, and crashing highs and lows even out. 1st grade is tough and requires a lot of energy and good 'brain juice' so we are pumping as many nutritionally dense foods as we can!
I'll keep everyone updated on our progress!
Happy chaining all,
Alicia
So Mr. Ewan has been having some ups and downs with behaviors and headaches some revolving around snacks and eating and others revolving around sunlight. On the advice of the doc, we arranged for Ewan to have a snack about every 2 hours at school and at home to keep him on an even keel. It has been somewhat successful but the crash would come back pretty quickly. After talking with Sibyl and Ewan's neurologist we've pushed up the protein in those snacks and meals to keep him from crashing after high. For now we are experimenting with some high protein drinks and some energy bars (difficult to find because of Ewan's milk and egg allergies) but he seems to be doing much, much better with the highs and lows.
We also had to include a migraine medication because the headaches were getting out of control. Hopefully, we will continue to see improvement with both the new snacks and headache meds and see his appetite, stomach cramping, and crashing highs and lows even out. 1st grade is tough and requires a lot of energy and good 'brain juice' so we are pumping as many nutritionally dense foods as we can!
I'll keep everyone updated on our progress!
Happy chaining all,
Alicia
Two roads diverged in a yellow wood...
Many of you are reading the title and thinking, "Ok, Miss Lisha, where are you going with this post?" It's about the ups and downs of feeding and eating and where, as a parent, you have to take the road less traveled with the feeding kiddo. That poem by Robert Frost is one of my all time favorites and has helped me through so many traumatic and stressful events in my life. When my father died, this poem was there for me. When Ewan was having so many troubles, this poem was there for me. Two weeks ago when Miss Lisha was down in a deep funk, this poem was there for me.
Two weeks ago, my husband and I served hot dogs for dinner since both boys seemed to be doing so well with them. And then, it all fell to pot. We had the boys sit down and eat and Vaughn took a few bites and threw up at the table, and Ewan gagged his way through a few bites. Big, big sigh of disappointment from mommy and daddy.
After a few pep talks from Cheri, Stacey, and many others, I was able to start thinking positively again and keep going down the path less traveled. With a sigh, I too took the road less traveled and picked myself up and Anthony took me shopping at the store for some foods for the boys. Like Cheri and Sibyl have said, "Who cares if the kids don't eat hot dogs? Look at everything else they are eating!" Yes, yes, this is true (I concur as Stacey V would say!) but how nice would it be to go to a cook out and serve a plump, juicy dog with ketchup and mustard!
But Anthony and I did go shopping and Sibyl would have been so proud of us because most of our time was spent in produce and perimeter sections! Fresh fruits and vegetables of old and new varieties for the boys, trying out some seeds and nuts which are so full of protein, new baking mixes to try cornbread and homemade pumpkin pancakes (October is right around the corner!). So this time, with a sign of relief we made breakfast, lunch, and dinner very successful for the boys and no gagging or vomiting to be seen.
Two things have been pivotal in my positive outlook in life: The poem above by Robert Frost, and the biblical phrase, "This too shall pass". Both have helped me hang on to sanity and hope and give my troubles over to a much higher power. I remember when Ewan was very little, I had "This too shall pass" posted next to my bed, on the bathroom mirror, and on the refrigerator so as to constantly remind myself, "Chin up"!
Oh and by the way, just last week, both boys enjoyed a corn dog at a local festival and made mommy smile with pride at how well they really are doing!
Happy chaining everyone,
Alicia
Two weeks ago, my husband and I served hot dogs for dinner since both boys seemed to be doing so well with them. And then, it all fell to pot. We had the boys sit down and eat and Vaughn took a few bites and threw up at the table, and Ewan gagged his way through a few bites. Big, big sigh of disappointment from mommy and daddy.
After a few pep talks from Cheri, Stacey, and many others, I was able to start thinking positively again and keep going down the path less traveled. With a sigh, I too took the road less traveled and picked myself up and Anthony took me shopping at the store for some foods for the boys. Like Cheri and Sibyl have said, "Who cares if the kids don't eat hot dogs? Look at everything else they are eating!" Yes, yes, this is true (I concur as Stacey V would say!) but how nice would it be to go to a cook out and serve a plump, juicy dog with ketchup and mustard!
But Anthony and I did go shopping and Sibyl would have been so proud of us because most of our time was spent in produce and perimeter sections! Fresh fruits and vegetables of old and new varieties for the boys, trying out some seeds and nuts which are so full of protein, new baking mixes to try cornbread and homemade pumpkin pancakes (October is right around the corner!). So this time, with a sign of relief we made breakfast, lunch, and dinner very successful for the boys and no gagging or vomiting to be seen.
Two things have been pivotal in my positive outlook in life: The poem above by Robert Frost, and the biblical phrase, "This too shall pass". Both have helped me hang on to sanity and hope and give my troubles over to a much higher power. I remember when Ewan was very little, I had "This too shall pass" posted next to my bed, on the bathroom mirror, and on the refrigerator so as to constantly remind myself, "Chin up"!
Oh and by the way, just last week, both boys enjoyed a corn dog at a local festival and made mommy smile with pride at how well they really are doing!
Happy chaining everyone,
Alicia
Thursday, September 4, 2008
Going to Denver
Next week we are off to teach our new course in Denver. I am very excited. A brand new course, new videos and cases to teach. It is always scary to launch a new course, but this one should be good. I like how it came out. It focuses heavily on clinical judgment and decision making, how to know what to do and when to act, when to refer and how to interpret what you see in evaluations and therapy sessions. I am looking forward to seeing what the audience reaction will be.
I hope the powerpoint presentation is ok. I had vertigo and I was on meds the whole time I was working on it. Sometimes when you put something together, a huge talk like this, a slide comes up and you ask yourself, "What in the world was I thinking?" :) Hopefully there won't be any little surprises. Laura checked my work!!!
I hope the powerpoint presentation is ok. I had vertigo and I was on meds the whole time I was working on it. Sometimes when you put something together, a huge talk like this, a slide comes up and you ask yourself, "What in the world was I thinking?" :) Hopefully there won't be any little surprises. Laura checked my work!!!
Thursday, August 28, 2008
From Stephanie-Jase's First Day of Pre K: He loves food!
Hi all...this will be a short one but I just had to tell you what Jase said yesterday. We were on our way to his first day of pre k :( and I asked him, "Jase, how did you get big enough to go to school?" His reply with the enthusiasm only a 4 year old can have, "because I love food!" It was great and I thought of our fantastic feeding team and therapists right away! I finished the short drive to school with a smile on my face :)
Wednesday, August 27, 2008
Peaches
Peaches are one of my favorite fruits, however, the peach is also a challenging fruit for a sensory girl like me. First of all, I touch the peach using two fingers and just the tips of my fingers. While peeling it, the juice runs on my hands which I do not like and I usually have to wash my hands an additional two times just getting it prepared. Taste of a peach is wonderful, texture is the issue.
I bought four peaches last week. The first one was great. The next two, I got all the way through touching, peeling and slicing...took one bite and it had a texture that I guess I would call fuzzy and mushy, immediately spit it out. No more peach. Taste-perfect, texture-unacceptable. The fourth peach sits in a bowl in my kitchen. I don't know if I want to try it or not. I certainly approach it differently than I did when I first brought the peaches home. Two bad experiences have resulted in me avoiding that lone peach.
Interesting...huh?
I bought four peaches last week. The first one was great. The next two, I got all the way through touching, peeling and slicing...took one bite and it had a texture that I guess I would call fuzzy and mushy, immediately spit it out. No more peach. Taste-perfect, texture-unacceptable. The fourth peach sits in a bowl in my kitchen. I don't know if I want to try it or not. I certainly approach it differently than I did when I first brought the peaches home. Two bad experiences have resulted in me avoiding that lone peach.
Interesting...huh?
Saturday, August 23, 2008
Oral Hygiene, Oral Care and More on Secretions
Alicia's post, though not the most pleasant of topics is a vital one. Especially for our children who are underweight, have health challenges or chronic congestion and are aversive to oral care.
Did you know?
-Infants that have RSV (typically developing infants)can aspirate during this illness. The research study on this shows that they return to normal patterns of swallowing once the illness passes, but imagine what an illness can do to some of our patients who struggle to swallow safely on a good day.
-Thick secretions can be aspirated from the nasal cavity, oral cavity AND when a baby is having a lot of this type of drainage, it can be aspirated during reflux episodes of stomach contents/mucus. Infants also have trouble clearing thicker matter from the pharynx. This is why I don't agree with honey liquid for babies...and the displacement of free water in their feedings...Anyway, the more acidic the type of aspiration, the more damaging to lung tissue. I will teach a lot more on this at the course in Denver. My job is to help keep babies safe 24/7 not just when feeding.
-Kids that won't allow teeth brushing build bacteria in the mouth. This can be aspirated in saliva in sleep.
-Bad reflux up to the nose/throat at night can also contribute to bacteria build up in secretions compromising health further if aspirated
-When children are tube fed and sick, I have tricks to help with vomiting first thing in the morning...it varies child to child and case to case. But talk to your dietitian or GI specialist if you struggle with this, especially the during the seasonal allergy struggles
-When you have a cold, do you really want to eat? It is fatiguing. Think higher calories, but easy on the stomach type foods. If you have a tube,use it. Cut back on the challenges of feeding by mouth. You won't lose anything. In fact, trying to get a child to eat during a time of illness may make the child feel so unsafe that he becomes aversive and fearful.
-Consider air purification systems, allergy fighting wraps around mattresses, bedding etc, removing carpet and stuffed animals in your child's room if your child is really struggling with allergies. Talk to your pediatrician or pulmonologist for guidance...don't just rip up your carpet today.
Hope some of this helps!
Did you know?
-Infants that have RSV (typically developing infants)can aspirate during this illness. The research study on this shows that they return to normal patterns of swallowing once the illness passes, but imagine what an illness can do to some of our patients who struggle to swallow safely on a good day.
-Thick secretions can be aspirated from the nasal cavity, oral cavity AND when a baby is having a lot of this type of drainage, it can be aspirated during reflux episodes of stomach contents/mucus. Infants also have trouble clearing thicker matter from the pharynx. This is why I don't agree with honey liquid for babies...and the displacement of free water in their feedings...Anyway, the more acidic the type of aspiration, the more damaging to lung tissue. I will teach a lot more on this at the course in Denver. My job is to help keep babies safe 24/7 not just when feeding.
-Kids that won't allow teeth brushing build bacteria in the mouth. This can be aspirated in saliva in sleep.
-Bad reflux up to the nose/throat at night can also contribute to bacteria build up in secretions compromising health further if aspirated
-When children are tube fed and sick, I have tricks to help with vomiting first thing in the morning...it varies child to child and case to case. But talk to your dietitian or GI specialist if you struggle with this, especially the during the seasonal allergy struggles
-When you have a cold, do you really want to eat? It is fatiguing. Think higher calories, but easy on the stomach type foods. If you have a tube,use it. Cut back on the challenges of feeding by mouth. You won't lose anything. In fact, trying to get a child to eat during a time of illness may make the child feel so unsafe that he becomes aversive and fearful.
-Consider air purification systems, allergy fighting wraps around mattresses, bedding etc, removing carpet and stuffed animals in your child's room if your child is really struggling with allergies. Talk to your pediatrician or pulmonologist for guidance...don't just rip up your carpet today.
Hope some of this helps!
Friday, August 22, 2008
Superfluous Secretions...Too much of a good thing is a bad thing
So, this probably isn't the most appealing discussion you'll find on this blog but for some of us parents it's just a fact of life. Mucus, it's a real pain in the rear end for many of us and not pleasant to talk about. Instead of the word mucus, I think I'll just say secretions. The word mucus just gives me the heebie jeebies.
So why the need to talk about secretions on a feeding blog?
Well, for some of our kids, all that extra 'gunk' makes eating and swallowing a tremendous task. I personally don't know how many different types of children have problems with this, but I know that my son with Eosinophilic Esophagitis struggles with all the 'gunk'. He gets a cold and it lasts FOREVER. And when he does, the feeding and swallowing backslides a few steps. It's enough to make a mom (or dad!) need Calgon to take them away!
You know Cheri's previous post about letting go is true. You let it all go to someone else, you find out some answers, and viola! you think you're skipping down the yellow brick road--singing like Julie Andrews on a moutain top. And then...you backslide...and all those feelings of doubt and guilt come rushing back in. Am I doing something wrong? Have I missed an ingredient or allergy somewhere? What is going on with this kiddo, why can't he take a drink or a bite without coughing up half his lungs?
I've come to the conclusion that this is no sprint, it's an Olympic sized life long marathon to keep everything on the up and up, at least in terms of averages. I know that Ewan will have moments of backslides but then continues to keep making progress in the interim and that's what makes me smile. I know I can take pleasure in the times when he reaches over at the buffet and grabs a new noodle (after mom has brushed those pesky parsely green flakes away) and says, "Hey that's really good!" It's moments like these that will keep me going in the backslide times when Ewan is loaded up on medications and breathing treatments and hot showers and coughing up all the superfluous secretions and I have purchased stock in Kleenex.
Chin up for those of you in the backslide times and of course, as always, Happy Chaining!
Alicia
So why the need to talk about secretions on a feeding blog?
Well, for some of our kids, all that extra 'gunk' makes eating and swallowing a tremendous task. I personally don't know how many different types of children have problems with this, but I know that my son with Eosinophilic Esophagitis struggles with all the 'gunk'. He gets a cold and it lasts FOREVER. And when he does, the feeding and swallowing backslides a few steps. It's enough to make a mom (or dad!) need Calgon to take them away!
You know Cheri's previous post about letting go is true. You let it all go to someone else, you find out some answers, and viola! you think you're skipping down the yellow brick road--singing like Julie Andrews on a moutain top. And then...you backslide...and all those feelings of doubt and guilt come rushing back in. Am I doing something wrong? Have I missed an ingredient or allergy somewhere? What is going on with this kiddo, why can't he take a drink or a bite without coughing up half his lungs?
I've come to the conclusion that this is no sprint, it's an Olympic sized life long marathon to keep everything on the up and up, at least in terms of averages. I know that Ewan will have moments of backslides but then continues to keep making progress in the interim and that's what makes me smile. I know I can take pleasure in the times when he reaches over at the buffet and grabs a new noodle (after mom has brushed those pesky parsely green flakes away) and says, "Hey that's really good!" It's moments like these that will keep me going in the backslide times when Ewan is loaded up on medications and breathing treatments and hot showers and coughing up all the superfluous secretions and I have purchased stock in Kleenex.
Chin up for those of you in the backslide times and of course, as always, Happy Chaining!
Alicia
Tuesday, August 19, 2008
Sometimes to solve a problem, you have to let go of it...
Don't you find sometimes in life that we worry so much about something and hold on to that worry so forcefully, that it takes over almost every waking thought? I have done that before and it is not healthy. I see myself in so many parents who come to see me. I was that way before Luke was diagnosed with CVS. I lived each day with anxiety and I had a great deal of stress that impacted my health in a very negative way. Once Dr. Fishbein entered our lives I learned to let go and put the problem down in front of him. But it took a great deal of effort to let go. I was very protective and I wanted to maintain control. I had to learn to trust him to do what was right to help Luke get better. It is hard to trust. I know people come to my clinic and all these members of the team walk in...it is hard to tell your story, hard to let it go and hard to accept help.
Ask Alicia, she will tell you that she thought I was crazy the first day we met. Alicia is so capable and so able to handle about a million things at once. It was not going to be easy for her to open her hands and let me help carry Ewan's problems with eating. She was going to have to know that I was competent to do so. Or she would not waste her valuable time with me. I was like that to the max with every physician who crossed Luke's path in the hospital. They had about 10 seconds to establish their intellectual capabilities or I dismissed them in my mind. Those poor residents! I was a force of nature. When Jase came to see us, I knew that Stephanie needed to hear that it was not her fault, her eyes were full of pain. I saw that and I remembered when my eyes looked that way. Jessica and Adam were weary and she was hanging on by a thread. Alex was very sick from undiagnosed aspiration on the day we met. It took me about 50 minutes to get him calm, organized, breathing better and handling secretions in clinic. Her strength amazed me, but her pain was palpable in the room. I asked about how she was doing and she told me to stop, I told her "OK, but I will ask again" and smiled at her and then I returned my focus to Alex. He smiled at me. I had just met a family that would be a very significant part of my life.
I hope parents feel safe when they come to see me. I know their expectations are so high. I know you as a parent want a return on the effort it takes to come see us. It isn't easy, there is no magic cure. Dr Fishbein calls me "Tinkerbell," but I don't have a wand. I won't tell you chicken nuggets=breaded vegetables=perfect diet. I will tell you how to make changes at home in the real world, but I can't be there to do it for you. To guide, support and counsel yes. But the work itself is still there. What I can do is help you put the problem down and study it and find out what gives it life. I can help you dismantle it and make it something smaller and more manageable and less consuming.
Luke still has CVS, but I know what it is, what to do and how to respond. I know who to call and how to wait for it to pass so he is as comfortable as possible. I know how to proceed after it is over. That made this huge boulder of a problem in our life into a rock I carry around. Still heavy, but I am able to get around it and live because we have some good people in our lives who I allowed to help us.
Ask Alicia, she will tell you that she thought I was crazy the first day we met. Alicia is so capable and so able to handle about a million things at once. It was not going to be easy for her to open her hands and let me help carry Ewan's problems with eating. She was going to have to know that I was competent to do so. Or she would not waste her valuable time with me. I was like that to the max with every physician who crossed Luke's path in the hospital. They had about 10 seconds to establish their intellectual capabilities or I dismissed them in my mind. Those poor residents! I was a force of nature. When Jase came to see us, I knew that Stephanie needed to hear that it was not her fault, her eyes were full of pain. I saw that and I remembered when my eyes looked that way. Jessica and Adam were weary and she was hanging on by a thread. Alex was very sick from undiagnosed aspiration on the day we met. It took me about 50 minutes to get him calm, organized, breathing better and handling secretions in clinic. Her strength amazed me, but her pain was palpable in the room. I asked about how she was doing and she told me to stop, I told her "OK, but I will ask again" and smiled at her and then I returned my focus to Alex. He smiled at me. I had just met a family that would be a very significant part of my life.
I hope parents feel safe when they come to see me. I know their expectations are so high. I know you as a parent want a return on the effort it takes to come see us. It isn't easy, there is no magic cure. Dr Fishbein calls me "Tinkerbell," but I don't have a wand. I won't tell you chicken nuggets=breaded vegetables=perfect diet. I will tell you how to make changes at home in the real world, but I can't be there to do it for you. To guide, support and counsel yes. But the work itself is still there. What I can do is help you put the problem down and study it and find out what gives it life. I can help you dismantle it and make it something smaller and more manageable and less consuming.
Luke still has CVS, but I know what it is, what to do and how to respond. I know who to call and how to wait for it to pass so he is as comfortable as possible. I know how to proceed after it is over. That made this huge boulder of a problem in our life into a rock I carry around. Still heavy, but I am able to get around it and live because we have some good people in our lives who I allowed to help us.
Monday, August 11, 2008
Food Chaining: Language-Learning Food Activities
Don't overlook fun language-learning themes you can add to your feeding therapy sessions. For example, the great idea Stacey used with Ewan and Vaughn of learning all about baseball and hot dogs/popcorn. There are so many learning possibilities off of that activity. Get out your baseball cards and have some fun. Here are some fun ideas...you can make things as simple or as complex as desired. Think themes like fairs, carnivals, picnics, a luau (Alicia did a whole unit on Hawaii and volcanoes), ice cream socials, lemonade stands, holiday food and birthday parties. You can make, color and decorate party hats, talk about colors and shapes, add color to frosting, make cookies of different shapes and sizes..while working on helping the child feel safe around food. Make your own restaurant or cooking show. You might have a beach BBQ, a bakery or pizza parlor theme in therapy. Add music and costumes like beach balls, picnic baskets, a chef hat or apron. Make your own McDonald's commercials. There are more foods at Mickey D's than chicken nuggets. Much healthier choices now. Peel your own apple slices for a homemade Kid's Meal and use that in your commercial. Film your commercial, these are great memory makers too. Make your own grocery store, you can go as simple or as complex as you want... this is a good money activity too. Paint a color plate (craft stores can be great fun) and match the colors of foods or follow the food pyramid toward healthy eating goals. Try Dole 5 a Day website for fun games for kids to help children learn about healthy eating. You can learn about fishing, farming and agriculture. Teach kids about seasons, how foods are made or grown and how they get to the grocery store. There are endless possibilities, tractors...get a toy tractor theme going. Put some vegetables in the back of the toy truck. Just touching the food is a huge step forward. Or put pieces on a toy train or truck/plane and teach about how food is transported. Video sites like www.cosmeo.com are very fun to use in treatment. You can introduce foods that are traditionally associated with certain countries and learn about the world while working to expand the diet. Go to Google Earth and fly to the country. I had a patient come to my clinic from Italy and we learned so much from them while they were here for a week of intensive treatment. It was a great way for us to be together, share information and recipes. I will always treasure that experience and I learned a lot!
Sunday, August 10, 2008
Gluten Free Cinnamon Rolls
I have gluten intolerance, not Celiac Disease, but gluten causes bad things to happen to me including a horrible taste in my mouth, congestion, itchy red bumps on my skin, GI distress, bloating, pain and as Laura and I say, "mass GI evacuation." In other words, the end result of eating is not positive. But even with all of this happening, I have had a 40+ love affair with bread. I miss it so much. I have not been a good girl as far as compliance goes. For more on this go to my"A Day in the Life with Cheri, Randy and Luke" blog and you will see how I have struggled to follow this diet. Now, I am very sensitive to the taste, texture and after-taste of food. I have a revulsion to tapioca bread. After eating it, I could taste it for days...I can't even handle the thought of it or the smell of it now. So, after falling off the gluten free wagon hard and cheating big time, Alicia intervened for me and she and Anthony made me gluten free cinnamon rolls. They were heavenly. Probably a thousand calories each, but heavenly. Bad for the waistline, good for the GI tract. Thank you both again.
But do you know what was weird?? I was almost anticipating all the GI symptoms as I ate bread again. It didn't come. That was awesome and yet, very weird. I had a second roll today and no symptoms. I was waiting to get sick. Very interesting....I don't know how to describe what I felt but I need to think about this some more. I was always sick when I ate. Always. I was told I had lactose intolerance, IBS, spastic colon...you name it. Years of misdiagnosis. Sibyl diagnosed me correctly. I could not tolerate milk because my gut was impacted so negatively by gluten. No gluten...ice cream came back. Yippee.
Maybe there can be some bread for me once in a while. It was so good to eat and not hurt. I wonder how many kids are out there undiagnosed?
But do you know what was weird?? I was almost anticipating all the GI symptoms as I ate bread again. It didn't come. That was awesome and yet, very weird. I had a second roll today and no symptoms. I was waiting to get sick. Very interesting....I don't know how to describe what I felt but I need to think about this some more. I was always sick when I ate. Always. I was told I had lactose intolerance, IBS, spastic colon...you name it. Years of misdiagnosis. Sibyl diagnosed me correctly. I could not tolerate milk because my gut was impacted so negatively by gluten. No gluten...ice cream came back. Yippee.
Maybe there can be some bread for me once in a while. It was so good to eat and not hurt. I wonder how many kids are out there undiagnosed?
The 2008 Olympics: Experiencing Food in China
One of the correspondents on the Today show went through Beijing to check out the food. She was taken through the city with a guide. The guide told her many foods are considered spiritual and powerful..not necessarily eaten for the taste. This poor, brave girl ended up eating a variety of cooked bugs, scorpions, tiny turtles...you should have seen her face. She tried to pull her lips away from the food as much as she could, she tried to bite with her front teeth to get some idea of texture, she closed her eyes and grimaced, her shoulders were up to her ears, she had tears in her eyes...you get the picture.
Much like our kiddos at the table. As Marsha Dunn Klein would say, "Everything IS a grasshopper"...
Much like our kiddos at the table. As Marsha Dunn Klein would say, "Everything IS a grasshopper"...
Pre-Chaining and Food Chaining: Fun Oral Motor
Hi. Jessica and I have been talking about Alex. He is refusing his pacifier. Jessica was worried about that, she thought he had lost some of his skills and this was a sign of regression. I told her to think about her older boys, how old were they when they gave up a pacifier. He doesn't want it anymore, he hasn't lost any skills. He is shaking his head no and turning away from us. He is communicating with us. He was also refusing his Nuk brush but accepting his DuoSpoon and his cup. The Nuk is going in the trash. He is keeping the P and Q tubes and the DuoSpoon and we are going to offer him other, creative chewies and utensils to learn from, explore, build confidence toward our goals. He is teething, so let's take advantage of his need to chew and bite. Nothing will be pushed on him, just placed in his hands or on his tray. He can have a rubber spatula or ladle or cloth (frozen washcloth dipped in juice) if he wants one. He can learn to explore these "chewies" and it will teach him so much more on his own than someone else touching his face. Alex might like playing with food with his brothers, everything modified for him... Consider some of these things below. Just being outside and interacting with your family is powerful treatment.
These activities can be explored in many ways for kids. The activities will vary by age and needs. Think about playing "soup" and "tasting" your creation with the ladle for older kids...I like to stir and play with liquids and splash (sometimes this is a fun one for outside, like wading pool play, it makes a mess..no you will NOT see me in a swimsuit). You can also put flavored liquids in mini spray bottles and have a water fight. You might spray some on your mouth or lip and get a taste. There should be lots of giggles in this activity. You can flavor liquid in large bowls and play splash with the ladle, utensils or your hands. The kids may taste something or bring hands to mouth. You can make a few bright colored juice ice cubes or use shaved ice and add to the water or play in carbonated or flavored water. (Last week, one of my very aversive patients and I played with a bunch of straws and utensils, Cool Whip and jello cups. She started bringing the straw to her mouth on her own). Kids can lick a ladle, explore cups to pour and play. Fun for a hot day. Don't forget all the fun language-learning that you can add to this: concepts, water, swimming, diving board, life guards, temperatures, colors...add to it and really make something fun. If your child does not like being wet..don't do this one. Water tables or containers in all sizes are also fun. Stacey does a lot of work with dry rice on one side and cooked rice on the other, pastas dry and cooked...so on. Make your own lemonade stand, pretzel stand or hot dog cart. Put your ingredients in the containers. Make hot dogs for the family..let your child be in charge. Stacey also did a whole unit on baseball with some of her popcorn activities. Think about how much you can teach (money concepts too) if you think about where and how we encounter food in our lives! Isn't it exciting. In these situations, kids may just try foods on their own. Have fun. How do children learn? They play. Food is to be enjoyed! These activities are also great stress relievers!
These activities can be explored in many ways for kids. The activities will vary by age and needs. Think about playing "soup" and "tasting" your creation with the ladle for older kids...I like to stir and play with liquids and splash (sometimes this is a fun one for outside, like wading pool play, it makes a mess..no you will NOT see me in a swimsuit). You can also put flavored liquids in mini spray bottles and have a water fight. You might spray some on your mouth or lip and get a taste. There should be lots of giggles in this activity. You can flavor liquid in large bowls and play splash with the ladle, utensils or your hands. The kids may taste something or bring hands to mouth. You can make a few bright colored juice ice cubes or use shaved ice and add to the water or play in carbonated or flavored water. (Last week, one of my very aversive patients and I played with a bunch of straws and utensils, Cool Whip and jello cups. She started bringing the straw to her mouth on her own). Kids can lick a ladle, explore cups to pour and play. Fun for a hot day. Don't forget all the fun language-learning that you can add to this: concepts, water, swimming, diving board, life guards, temperatures, colors...add to it and really make something fun. If your child does not like being wet..don't do this one. Water tables or containers in all sizes are also fun. Stacey does a lot of work with dry rice on one side and cooked rice on the other, pastas dry and cooked...so on. Make your own lemonade stand, pretzel stand or hot dog cart. Put your ingredients in the containers. Make hot dogs for the family..let your child be in charge. Stacey also did a whole unit on baseball with some of her popcorn activities. Think about how much you can teach (money concepts too) if you think about where and how we encounter food in our lives! Isn't it exciting. In these situations, kids may just try foods on their own. Have fun. How do children learn? They play. Food is to be enjoyed! These activities are also great stress relievers!
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