Food Chaining with Cheri Fraker and Laura Walbert (and Friends)

Sometimes to solve a problem, you have to let go of it...

2008-08-19T03:43:00.000-07:00

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.

Food Chaining: Language-Learning Food Activities

2008-08-11T02:41:00.000-07:00

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!

Gluten Free Cinnamon Rolls

2008-08-10T08:53:00.000-07:00

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?

The 2008 Olympics: Experiencing Food in China

2008-08-10T07:03:00.001-07:00

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"...

Pre-Chaining and Food Chaining: Fun Oral Motor

2008-08-10T06:37:00.000-07:00

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!

New Course in Beautiful Denver, Colorado

2008-08-08T05:43:00.000-07:00

I love Denver! We get to go next month. Here (to the right) is a mini-flyer on the course if you have questions or visit www.cepauniversity.com...This one should be fun!

Food Chaining: Food Ideas

2008-08-03T06:09:00.000-07:00

Hi. There are many ways to move toward a goal of adding fruit, meat and vegetables to your child's diet. The problem with the big three here (everyone's goal foods) is the texture and the fact that these foods vary widely each time you eat them. Meat can be tough or grainy, flavor varies, broth can come out during chewing, fruits and vegetables are never consistent even in the same serving. Think of how many different experiences you have had eating corn on the cob, a banana, an apple or a watermelon...we are happy when we get a "good one." Sometimes we discard the food if it isn't what we wanted. There are no surprises with processed foods that our kids seek. Chicken nuggets are always chicken nuggets. Crackers and chips don't vary in taste, texture or temperature.

So how can you work toward these more challenging and complex foods?

Vegetables...consider Veggie Stix, a vegetable based snack food, vegetable crackers or Pirate's Booty and seasoned chips made from beets, sweet potato, spinach or kale...they are very good. Salsa, spaghetti sauce with veggies added, cheese soup with pureed vegetables, cheese sauce over vegetables (only if the child likes dip, if not then don't do this). Sweet potato fries, raw veggies cut in narrow strips with dips, zucchini bread, carrot cake, fruit breads, muffins, fruit filled pastries, fruit or yogurt smoothies, shakes, drinkable yogurts. V-8 Splash is a drink with fruit and vegetables. These may be starting points to work toward the actual fruit, vegetable or a healthier version of meat. One way to do this is to move your child from chicken nuggets to other breaded meats and eventually to baked meat with a crunchy topping. Baked meats dipped in condiments may also work for kids who like to dip.

Just some ideas...Happy Chaining!

Reviews of Food Chaining Book....Concern

2008-07-27T18:04:00.000-07:00

Hi. Just read a couple reviews of our Food Chaining book. One woman stated that she skipped large portions of the book and said they did not apply to her child who she describes as a picky eater. Another lady described a diet that her child eats. I would not describe her child as a picky eater. From description, her child eats a lot of foods. She doesn't live in the world of families who wake up every day wondering what, if anything, their child will eat and go to bed worried about what, if anything they ate.

But the part that concerned me enough to post a comment on the Amazon website was the one portraying us as fear mongering about underlying medical disorders. We are a medical feeding team. Dr. Fishbein is a pediatric GI, there is nothing but accurate information in the book. This information is not intended to make people fearful, but to help them see that there can be more to the story. There are feeding teams and hospital programs for children with these issues all over the nation. Children refuse to eat for a reason. Just a word of caution here, while many of the kids we see in our feeding team clinics are picky eaters, they are undernourished. We also find a very large number of children with underlying medical issues all the time. Allergies, eosinophilic esophagitis, laryngeal penetration on swallow studies, sensory processing disorder, reflux esophagitis, enlarged tonsils and adenoids impacting swallow, aspiration and on and on and on. Sibyl and I both have children with underlying medical disorders. I went through hell and back with Luke and what he suffered was unbelievable with cyclic vomiting. I have held my child as he vomited blood, vomited 50 times in an hour, he told me he was dying and told me "Goodbye mommy"as he went into hypovolemic shock and I have seen him suffer the effects and ravages of this disorder on his esophagus to this day, at age 15. I was attentive to my child and took him to many medical professionals. So are our parents who are searching for answers for their children. It was Dr. Fishbein who found the answers for us after a lot of misdiagnosis. She felt that people could be confident in their pediatrician for all the answers, luckily for her, she has never had to experience anything that would show her the way things truly can be.

As for the comment about the book going from infants to children many times. It does, from each professional on the team you get the complete picture, infancy to childhood in each of the first five chapters. You use the techniques for the child that are age appropriate. It would be foolish of us to neglect any stage of development, say the early issues of formula intolerance or breastfeeding problems to the three year old refusing food to the teen who doesn't want to eat. The early feeding problems of infancy contribute to the problems later in development. The point of the book is to give people access to the expertise of each team member in assessment and how to treat kids (peds GI, dietitian, occupational therapy, speech therapy and psychology) so you can feel like you are then ready to safely move on to combining foods to expand the diet.

Please don't skip all around as this lady did, read the book or get it from the library or write to me and make sure you have the first five steps covered so your child does not have to suffer at meals. If you just want food chains...it is so much more complex than that.

I welcome comments from everyone, good or bad. But, really, when it comes down to it, how can you review a book you didn't read? See some other reviews below under the picture of the chaining book. I am more than open to critique of all kinds, as it helps me learn and makes me better, but I want a fair assessment of the work as a whole and I will not be silent when there are comments from someone who is not educated in this field that prevents a child from getting the help they need.

Our book is the only one out there written by an actual functioning feeding team working with and evaluating infants and children every day. Food Chaining has been presented at the World and National GI conferences, American Speech Language and Hearing Convention, American Academy of Cerebral Palsy and Developmental Medicine and articles have appeared internationally in medical and nutrition journals, including the Journal of Clinical Nutrition. If it was just about food, no one would come to clinic or need to. Dr. Fishbein has eight clinics and I have two, Sibyl has two...that was our big caution to people when we wrote the book, go through the chapters and see if there is anything that sounds like it applies to your child and take that to your doctor or therapist. All of this boils down to finding information to help children in need. Don't miss something that easily treated, could help your child eat with enjoyment.

Autism: Please Look Beyond the Big A...I am Frustrated, but Hopeful

2008-07-26T15:04:00.001-07:00

Hi, I received a call from Alicia 911-style on Friday regarding a child with Asperger's, very high cognitive skills who had recently demonstrated aggressive behavior. When we talked, Alicia had found that this child had not had a BM in 7 days, had been vomiting profusely, had eczema, a history of ongoing GI issues and that this aggression was out of the ordinary. This poor mother had tried to get the medical community to see that her child had something physical going on and the recommendations to her were in regard to psych medications.

Someone, tell me where is it written that a child with autism cannot have something else going on other than just autism?

Now, I see this every day, not just with kids with autistic spectrum disorders, but it frustrates me as it takes me back to my own story when I flash back to six years of telling people that my son Luke vomited 50x's an hour every six to 12 weeks AND these spells lasted two days...no one payed attention to me either. That is, until the White Knight, Mark Fishbein, MD saved my son and in doing so also saved his parents. Enter Hope. I know what that moment was for Randy and I, when Dr. Fishbein diagnosed Luke and told us what cyclic vomiting syndrome was and how he could help us. I know Alicia had that moment when Dr. Fishbein told her that Ewan had EE and yes, he had autism, but Ewan finally had the help he needed and deserved. Dr. Fishbein is still there for us and he always will be. As for this little boy Alicia was concerned about, he is so constipated, he is now withholding due to pain, he is vomiting...he needs help...NOW. So we called Chicago and Dr. Fishbein is going to see him this week.

But how many kids have underlying, untreated GI disorders, allergies, etc and no one hears them or their parents? We need to get the message out...the chaining book was a start, we thought with Sibyl as a dietitian and Dr. Fishbein as a peds GI, parents could get the guidance and the information to help find a direction to help their children.

I still flashback. I still have mommy guilt for six years I didn't move heaven and earth to try to find the answer for Luke. I wasn't thinking like a therapist, I was thinking as a mom. I had it out with doctors, I pushed, I tried, but I didn't know where to start. But through Luke and what he went through, we all started working together and I now travel the world talking and writing about CVS, GI disorders and feeding problems in children.

But I am still frustrated!

Picky Eater or Reflux Esophagitis?

2008-07-24T03:22:00.000-07:00

Hi All. I have recently had several children in my clinic that have presented with limited liquid intake but no overt signs of dysphagia. Remember, some children who self limit liquids (drink a bit and stop) have swallowing problems. With food, these little ones would take one or two bites with enjoyment and stop. Sometimes the kids would reach back in the mouth and pull food back out instead of swallowing. The food chaining intake forms I use to analyze what children eat (there is one in back of the Chaining book) revealed that these kids ate a variety of foods, just very small amounts. The parents all said that "picky" didn't quite describe their kids. They did not understand why their children seemed to have no appetite. Now, there are children out there (and it seems like they all come to see me, that no matter what you do, they have very little appetite) but these kids seemed to hit a wall and suddenly stop eating. Watching these kiddos eat, you felt like they would have eaten more, but something happened that was not swallow related or aversion. Liquid intake was higher than intake of food. Occasional cough after eating with some of the kids or when playing/sleeping. All the kids (one we still don't know yet) were 3-4 years old and it turned out that the children had raging horrible reflux esophagitis. This can also be a risk factor for reactive airway disease if you aspirate gastric content while reclined/sleeping. One boy told us there were "teeth" back there. After treatment with Prevacid solutabs, he doubled his intake. The kids did not complain of pain, but when we saw this type of response to food, we suspected esophagitis more than EE and knew we needed a trial of meds or a GI referral before proceeding further. Alicia saw active eating with enjoyment after Ewan was treated for EE. I have seen Luke struggle with the ravages of esophagitis from vomiting 65,000 and counting times in his life from 15 years of cyclic vomiting syndrome. Reflux can be silent. The child who refluxed like crazy in babyhood and it "stopped" at age one, may not have stopped at all. So, if you have a child you are treating who has this type of presentation, go back to the first step of food chaining: eliminate physical cause for the eating disorder.

Eosinophilic Disorders: The New Codes Are In!

2008-07-23T19:09:00.000-07:00

So first let me say WAY to GO Stephanie and Jase! What great news to hear about the chicken and wedge fries! (read the post below from Stephanie!) Boy do I know how Stephanie feels when she says she knows which restaurants have which fries. My husband can rattle off all the restaurants in our area that serve the right fries, chicken strips and where all the allergy free chicken strips are at!

On an another note, I do have some good news for those of you who work with children and adults with eosinophilic disorders such as Eosinophilic Esophagitis, Eosinophilic Gastritis, Eosinophilic Gastroenteritis, or Eosinophilic Colitis (EE, EGID, etc...). The new ICD-9 Codes are in! So not to sound too much like Steve Martin from The Jerk, with the whole, "The new phone books are in! The new phone books are in!" but really it is pretty exciting! It is a huge accomplishment for the group known as APFED (www.apfed.org) and for all the families raising children with eosinophilic disorders and all the medical staff out there that work with these kids and adults.

For those of you that need to know what the codes are:
530.13 Eosinophilic Esophagitis
535.7 Eosinophilic Gastritis
558.41 Eosinophilic Gastroenteritis
558.42 Eosinophilic Colitis

Happy Chaining everyone!
Alicia

Food Chaining: You just never know...

2008-07-22T19:10:00.000-07:00

Hi all! Stephanie here. Yesterday evening I ran up to our pharmacy/grocery store to pick up a prescription. As I left the kiddos with their Dad, I promised I'd make supper as soon as I got home. Starving myself, I get out of the truck at the store and I am overwhelmed by the smell of fried chicken. Yum! On a day like yesterday, heat advisory and all, who wants to cook? I let the folks at our local deli do my cooking and I brought home a fried chicken dinner with potato wedges. Did I think Jase would eat the wedges, noooooo, but you never know. If he didn't, Claire would. She eats just about anything!
I split the chicken breast between the two of them and was beginning to worry that I didn't get enough chicken. They were devouring it! Then I broke out the wedges and said in the most excited voice, "Jase, look at these gigantic fries I found at the grocery store!" He said, "Whoa! Can I have one?" And that was that. Several times I thought he was going to choke...not because of texture but because he was shoving them in so fast his little mouth couldn't keep up!
These are moments that I love. Something very unexpected yet something that will totally make our lives easier when eating out or running up town because I don't feel like cooking. You know how hard it is to remember what restaraunts serve what kind of fries...skinny, fat, skin on, skin off...uggh! So, I guess the SLOW progression from regular french fries (McDonald's) to Fast Food French Fries baked at home (Ore Ida) to Crinkle Cut with seasoning (Ore Ida) to steak fries (Cracker Barrel) t0 potato wedges (SuperValu Deli) has really paid off! Woohoo!

He's on a roll. Tonight he ate his very first pizza. California Pizza Kitchen, Thin Crispy Crust...Sicilian Recipe. I think he not only accepted this pizza, but liked it too, because there was no sauce. He doesn't seem to like red stuff. Can't think of one thing that he eats that's red. Hmmm? Anyway, he ate 3 slices of it with absolutely no qualms! Found the pizza at Sam's Club but have also seen it at Meijer when visiting Springfield.

Happy Chaining!

Oral Motor Therapy: Gag Me with a Spoon

2008-07-18T04:34:00.000-07:00

Hi. Alex is continuing his PreChaining program. We are working on bottle/liquid to treat the swallow and I am using the DuoSpoon, P and Q chew tubes dipped in food to work to develop his chewing and biting skills. He is not safe for solids yet, so he can swallow the smooth food and practice chewing on the textured utensils. He is also making his tongue less sensitive to contact and desensitizing the gag. I always ask parents if the kids are putting their hands in the mouth and triggering the gag. Jessica told me that Alex was doing this and she was worried about it. I told her I was thrilled about it. She too looked at me like I was crazy. Babies are hard wired to do this and Alex has significantly desensitized himself with no help needed from me. A baby gags easily and forward on the tongue for protection. You and I gag way back on the tongue, if we did not, we could not eat a piece of steak or solids without a huge gag triggering. Alex doesn't need me tongue walking or anything else. I am facilitating his oral motor and he is doing his therapy, building confidence and working on self feeding at the same time. I am so proud of my boy and so blessed to work with him. Lots of vocalizations too.
Check out Jessica's blog, "A New Kind of Normal" too for more on this.

Cheri Fraker and Laura Walbert: The New Fall Feeding Courses

2008-07-18T04:20:00.000-07:00

Hi...I have a lot of work to do! We have a new course for Denver, one for parents here in Illinois, we are doing the Chaining course in Toronto and a second new course with the amazing, wonderful Marsha Dunn Klein, MEd, OTR/L (someone pinch me, how can this be?) in Atlanta. I have all her books! Wow! No pressure there, huh?

So I have a lot of work to do. Laura is on vacation for a week and a half and I miss her already. We just finished our research study on reflux in infants and dysphagia. Compelling and dramatic results. I will post it as soon as it is finished. Dr. Fishbein is writing the full article now. We all just proofed the abstract. He is going to submit it to Journal of Pediatrics and for a presentation at National GI conference in San Diego (also this fall). I have presented at the national and world meetings in the past...but I was still absolutely petrified with all those physicians.

Anyone else feeling a little overwhelmed?

Visitors

2008-07-16T04:11:00.001-07:00

Hi
I finally figured out how to track visits to the website this week. Should be fun to see where people are from who visit our site....Alicia and Jessica help me figure this stuff out. Check out Alicia's website The AutismLife.com and Jessica's blog, "A New Kind of Normal"...they are both great!

Poor Weight Gain in Children...Use a Scheduled Intake Approach for Foods and Liquids

2008-07-15T16:57:00.000-07:00

I get a lot of questions from parents about poor weight gain in infants and children. Many times I am told that a child "eats all the time" yet he does not gain weight. Grazing is a pattern of nibbling on food throughout the day. But when you gather those little bites together through the day, there really isn't that much food. Grazing continually shuts down a more vigorous appetite. That is why when we as adults try to lose weight, we are told to eat frequent meals.

Grazing patterns often occur for many reasons. Children with sensory issues may hate the smells and appearance of many foods. So the child tries to get away from the table as fast as possible. Children with swallowing problems avoid eating because they do not feel safe at the table. Some children with reflux do not like to eat large portions of food or do not like to eat in the morning. The time asleep and reclined can lead to more reflux and make a child unwilling to eat until mid-day. Some children with reflux also prefer to drink vs eat. Avoiding the table and meals often leads to a child trying to get out of eating and leave the table.

As parents, we worry about our children, so we start offering food all the time or chasing kids around with food as they play. (My mom is sooooo guilty of this!) A child's appetite is a delicate balance. Eating scheduled meals and snacks, three meals, two to three snacks, is a real key to improving weight gain. Meals cannot be too long, twenty to thirty minutes maximum and snacks 10-15 minutes long. A sample meal schedule may be 7 am breakfast, 9:30 snack, 11:30 lunch, nap time, 2:30 snack, 5:30 dinner and a before bed snack. Scheduled meals and snacks often leads to greatly improved sleep patterns and better behavior. Parents are always amazed when they return to clinic and tell us about all the positive changes just from following a schedule.

Do not let your child drink caloric drinks between meals and snacks. Limit juice to 4 ounces a day and milk for a toddler to 16-24 ounces. Drinking milk and juice frequently between meals dampens appetite. Offer these liquids with meals and snacks. Water in small amounts between meals and snacks can be offered. Toddler eating patterns change and growth slows down the second year of life. A toddler's goal in life is to play and eating just gets in the way. Keep portions appropriate. Rule of thumb is a tablespoon of food per year of age. So for example, a two year old would eat 2 T of fruit, 2 T of meat and 2 T of vegetables. Don't overwhelm a child with huge Supersize American portions. The key is trying to have your child appropriately hungry and if this happens kids usually eat more at each meal and snack than they ever would nibbling. Work on helping your child learn to eat at the table or high chair for all meals and snacks. This isn't easy, but it is part of setting yourself up for success.

There are also other physical reasons for poor weight gain and these need to be explored by a pediatric dietitian or physician such as a pediatric gastroenterologist. Some children need calorie boosters added to foods and/or a supplement such as Carnation Instant Breakfast added to milk (I use vanilla) or Pediasure. Don't just think the child will grow out of it, some may but others may not. Good nutrition is an absolute key to a healthy life. It is very important to address it, the sooner the better.

How To Do Food Chaining Therapy: "Everything is a Grasshopper" Marsha Dunn Klein

2008-06-27T03:22:00.000-07:00

Many people understand the ideas of Food Chaining and it makes sense, but when it comes down to actually doing it, things can go horribly wrong. First of all, therapists or parents may do part of the program and not all of it (picking food that the therapist thinks matches the child's sensory eating profile vs basing changes on ratings, rushing, pushing past all the stages in the sensory hierarchy, huge portions) and then everyone feels worse than when you started.

I recommend that everyone read Marsha Dunn Klein's websites (Mealtime Notions/Mealtimes Connections) and read the story "Everything is a Grasshopper" about a dining experience she had. Marsha had to eat real grasshoppers (seasoned, but oh my!) and she really makes you think about how children must feel at the table. Like they are trying to eat a grasshopper. Share Marsha's story (you can print it and give it to your families). Think of grasshoppers when you introduce new foods. Go slow. Usually when things go bad, something similar to this occurs...

When you start something new in a therapy session or at home, you give off vibes (you may be anxious, filled with anticipation, maybe a bit fearful) and the child immediately knows something is up. You must assess the mood of the moment, the day and the meal. Start small, small steps and don't ever say, "Take a Bite." Those words are the kiss of death.

So keep the grasshopper in your mind and imagine what usually occurs....

The child is called to the table. Hard enough even with favorite foods. Everyone is looking at him. Something is up. Put yourself in his shoes. He is a bit tired, hungry, coming to the table expecting chicken nuggets and fries and instead...he sees grasshoppers. Appetite...gone. He is not ready for this to be offered as "food" yet. Think of new foods as objects to learn about before you even consider pushing a child to eat. Even one grasshopper on the plate by his favorite food is enough to kill appetite, bring out emotions and end your meal, maybe end meals for days. You may pick up a piece of this new "food" and push it up by the child's face. It is still a grasshopper. You say, "Take a bite and I will take you to Toys R Us." Nope, definitely no toy or cash prize worth eating a grasshopper.

But what if things were slightly different, say you had your food on your plate safe and sound, you are outside, relaxed, having a cook out and you just watched a single grasshopper on the end of your picnic table. Far enough away to feel safe. You laugh and talk about a grasshopper and watch him jump. You might even look online to learn more about a grasshopper's life. You might even eventually feel like you could touch one. Or you might put a leaf up by the grasshopper and see if you can get him to jump or get on the leaf. In other words, you learn and explore...just like we learn about food in our programs done the right way, but you don't grab him and force him chow down. Why? Because food to these kids, any new food is the equivalent of what Marsha endured in another country. A Grasshopper.

So ask yourself... if you are forced to eat a grasshopper, do you think you want to come to the table again? What is easier, eating a whole grasshopper or just a foot? Still feel like you are going to barf? Me too, but I would choose a foot first.
Are you being "behavioral" if you refuse or are you just protecting yourself?
If you had a g-tube for your nutrition and someone stopped using it and offered you grasshoppers, would you eat?
Would you eat a grasshopper with dip on it? Nope. Still a grasshopper.
Marsha ate it after watching others do it, with lots of seasoning and wrapped up in a tortilla, scary, but it would be more palatable.

You probably feel queasy just reading this...so do our kids when they are at the table with us.
The child feels it 1000x's more. The more you remember this analogy and use it in treatment, the fewer mistakes you will make. This is not about how you perceive food and taste, this is about how the child perceives it.

New Research: Laryngeal Penetration and Aspiration

2008-06-24T18:04:00.000-07:00

Deep Laryngeal Penetration as a Predictor of Aspiration
Journal: Dysphagia Publisher-Springer New York
ISSN 0179-051X (Print) 1432-0460 (Online)
Issue: Volume 15, Number 3 / June, 2000
DOI 10.1007/s004550010018
Pages 153-158
Subject Collection: Medicine

Barbara Friedman1 and Jacqueline Bolders Frazier2
(1) Occupational Therapy Department, The Children's Hospital, Denver, Colorado, USA, US
(2) Department of Audiology, Learning, and Speech Pathology, The Children's Hospital, Denver, Colorado, USA, US

Abstract: Very little has been written about laryngeal penetration as a separate diagnostic event from aspiration. Laryngeal penetration has been described as an infrequent event in adult individuals without swallowing problems. This study describes the incidence of laryngeal penetration in 125 dysphagic children ranging in age from 7 days to 19 years who were seen over a 6-month period at The Children's Hospital in Denver, Colorado. Laryngeal penetration was identified in 60% of the study group, with 31% demonstrating deep laryngeal penetration. Of the children exhibiting deep laryngeal penetration, 85% aspirated, suggesting a strong correlation between these two events. It was noted that children exhibiting deep laryngeal penetration often began to aspirate further into their feedings. Use of extended feedings during videofluoroscopy is discussed as a diagnostic strategy in the presence of deep laryngeal penetration.

Food Chaining: Vaughn Stretching at Dinner

2008-06-16T16:49:00.001-07:00

So last post, Cheri mentioned 'stretching' a food experience and listed a very nice variety of ways to do this with different foods. Well, we had spaghetti tonight--ALL of us. No milk or egg allergies to contend with for this meal so everybody got a plate.

Now the last time that we tried spaghetti in a clinic visit with Stacey, Vaughn was very nearly brought to the verge of a heart attack over what might happen. He was under the chair crying his little eyes out over that little Italian dish.

So tonight, after several very successful sessions with Army guys and food products, we broke out the bucket of Army guys and went to town. Vaughn stretched quite a bit tonight with Army guy #1, a Power Ranger, Sir Topham Hat, and a bunch of toothpicks.

Army guy #1 quickly became entrenched in a dipping cup of marinara and had to be rescued with a string of spaghetti from the Power Ranger. Sir Topham Hat was more of sit and watch kind of guy during this whole debacle. Although I believe at one point, old Topham Hat threw a toothpick at Army guy #1 as a way to get out of the marinara quicksand.

Ewan grabbed his own Army men and both boys proceeded to stomp marinara all over their spaghetti. Vaughn dipped his bread in the marinara, licked marinara off of spaghetti strands, and squished cooked spaghetti through his hands (as he had done at therapy the week before). Ewan ate both the spaghetti and marinara combined and his bread dipped in marinara. Now that's some serious progress for both boys.

We've found through clinic sessions with Stacey that Vaughn has to get his fingers in it before he can even contemplate tasting. Problem for Vaughn is getting him to touch these things. So the wonderfully talented Stacey plans very elaborate ways to get those hands in contact with the food items. Last week was a sand and water table filled with cooked spaghetti on one side and a parsley, garlic salt, and water concoction on the other. It appears to be working in our favor as we've managed to get Vaughn to eat sandwiches, bread and all, alongside Ewan now.

Pretty exciting night over here at our house...marinara rescue and all!

Happy Chaining everyone,
Alicia

Food Chaining: How to "Stretch" to New Food Experiences

2008-06-05T08:29:00.001-07:00

I loved Alicia's post below about Anthony being 'the man' with the chaining program. Laura and I learned, and are still learning, from the wonderful Marsha Dunn Klein, the idea of a "stretch." You interact with food one way, how can you stretch to something else. There are many ways to do this...for example with corn for Ewan and Vaughn...you can touch it, lick it yes...but what about other ways to stretch..squish with fingers, use a decorative toothpick to stab the pieces of corn, make a corn shish kabob, count out pieces on a spoon or in a ladle or big spoon, try to catch them with your tongue, put seasoned salt or garlic salt or spray butter out to explore with the corn. Lots of stretches there.
With waffles, what about flavored syrup, strawberry or chocolate syrup or powdered sugar or look at different shapes of waffles, using a cookie cutter to make shapes, paint or pour pureed fruit over the top or in batter if you get really daring, offering a frozen pancake and a frozen waffle and comparing the two, using whipped cream or sprinkles over the food or dusting with cinnamon sugar, rolling pancakes up like a cigar...stretch! Get frozen pancakes, waffles and french toast sticks, separate into freezer bags and let the kids pick out what they want. Or combine a french toast stick and a mini waffle in the same baggie. Different color plates and bowls...fun utensils...It is fun and can make meals anything but boring.
Hang in there Anthony, you are doing a great job. It can still be easy but a fun way to learn.

Food Chaining at Home: The Dad in the Kitchen

2008-05-29T12:06:00.000-07:00

So I went to work full-time about two weeks ago and my husband is now officially the 'stay at home' dad for the summer. Classes are out for him (he's still a puny undergrad ha ha!) so he is the go to guy for therapy, play dates, preschool, meals, and everything else till mom gets home. It's quite a change for our family. I had been a stay at home mom for oh about 7 years and Dad was the one who worked. We've reversed roles and it's been ALL kinds of interesting to see it playing out. The laundry is an issue, the bathrooms are an issue, and meals are now getting to be a problem.

The thing about being the 'go to' person for therapy is that you are the ONE who knows what is going on, what goals are being worked on, what goals are new, what are the new themes for sessions and so on. It's much easier to coordinate sessions and home therapy when you are the 'go to' person. My husband, Anthony, is adjusting to this new role. The Food Chaining part to my sons therapy sessions requires us to keep trying new foods, keep offering, to work on the chains that we have, to explore new foods and concepts, and to know when to push and when to back off.

Unfortunately, over the past two weeks my husband has fell off the Food Chain wagon.

Not because he doesn't believe in it, he's certainly committed to this after seeing such progress be made with both boys. It seems that for Anthony, it's harder to come up with all this on the fly and stick with the program without having me there to guide him. It was so easy for him to say, "hey guys we'll have waffles" because he KNOWS they will eat it. That's a rut I definitely don't want to get back into!

So last night I get home and my husband has dinner for ready for us meaning our daughter, him, and I. It was a dish that the boys could not have due to allergies so he was going to have to make something separate for them. I asked what the boys were going to have and he said "oh probably waffles." So we sat down and talked about how this was going backwards and not forwards for them and we need to keep pushing their palate and texture exposure forward and not remain in a food jag.

What was interesting was that he said, "I don't know HOW to do it, you need to be with me, I don't think I can figure this out on my own!"

So we went through our cabinets and frig together and I said ok, let me show you how to incorporate what they have been successful at lately and to include those core diet foods and put together a plate for these two.

First, one of the foods that we were having for dinner was not an allergy issue for the boys so on their trays it went...corn. Now corn is not an accepted food for the boys yet but the exposure is nice and gives us a chance to talk about it and explore it by licking and smelling.

Second we picked out the Dole Jello and Fruit since it was so successful in therapy sessions and we had been building on it at home. Then for Vaughn and Ewan we did sandwiches as this is a great way for both of them to explore multiple textures. Ewan had salami and ham on wheat bread while Vaughn not being ready for that yet, had crackers and peanut butter sandwiches. We chopped up fresh pears, broccoli, and carrots and threw in some raisins to make a tray of fresh fruit and veggies for the boys. Then I grabbed some maple syrup, honey, and chocolate syrup for some dips. They both had fruit smoothies to drink and when they tried all their foods by either eating, licking, smelling, or tasting they both had some small bowls of popcorn (a big big favorite).

All in all, a good variety of tastes, textures, smells, and even nutrition. So we are a work in progress with dad being our 'go to' guy. One suggestion that my husband had was for him to have a meal calendar or plan in place with food suggestions and ideas for the boys. We are definitely going to try this and see if it helps with the food jags and give the boys a better variety. I will say old Dad is still doing pretty good with all this, despite the small setback. Just the food allergies alone are enough to drive you insane, without adding in all the other aversions!

We'll keep you posted on how it goes this summer with the old man at home and if we come up with any good ideas, we'll be sure to pass them on!

Happy Chaining,
Alicia

Functional Goals: Food Chaining Ideas for Older Children and Adults

2008-05-09T11:13:00.000-07:00

Working with teenagers and adults can be easier in some ways and it can also be more difficult than children. It is often easier because older teens and adults see how challenging it can be not to be able to eat in social environments, communication is less of a challenge, learning about food can be accomplished quite easily and they are usually motivated to change. It can be more difficult at times because the selective eating patterns have been disordered for so long. It may seem like an overwhelming challenge.

But the truth is anyone can learn to eat a new food at any time in their life. You are never too old. The good thing is there are so many nice surprises out there and there are foods that may be very enjoyable.

So how do you learn to eat a new food? It is best to pick foods that match your sensory preferences/profile, but you can also target a new food you want to learn to eat. For some people, salad is a very functional food. You can eat it anywhere, with other foods you may like very much, such as bread or rolls, there are many dressings in a wide range of flavors, from oil based to creamy and you can control the amount. So break it down into achievable steps. Iceberg lettuce may be easier than mixed greens.

Explore the food, start with small pieces and work up to a level where you can take a few bites each day. The more you eat a new food, even in tiny amounts; the less sensitive you will become. Alternate a bite of lettuce with a bite of a food you enjoy. Take a bite of lettuce, take a bite of a favorite food or take a drink. Work up to two bites of lettuce between bites of a familiar food or drink. It is important that you pick a food that is functional for your lifestyle.

College students may find that learning to eat pizza is very functional. If you like bread or rolls, you may start with breadsticks, garlic toast or cheesy bread and in time be able to eat thin crust cheese pizza. If you are a business person and challenged by business dinners, explore menus for other items to add to your plate that you enjoy. Put a small portion of a target food on your plate. Desensitize yourself to the food item in a progression. Just having it on your plate or a side plate, is a start. Some people want to learn to eat a very challenging food like Sushi. That is a tall order. If you are going to go for it, again take it a step at a time. But start small, breaking it apart with a fork or utensil or exploring the sauces to mask flavor. Don't force it, give yourself time.

Reflux in Infants...Spit Happens

2008-05-03T14:02:00.000-07:00

As the mother of a cyclic vomiter and chronic refluxer and as a feeding therapist who has worked with a pedi GI for a decade...I know something about this subject. How do you know reflux is a problem or not?
Signs of uncomplicated reflux, the baby refluxes, but is a "happy spitter"
Random spitting-5 minutes or 2 hours after a feeding. In infants, the lower esophageal sphincter is not mature yet and it opens in a random manner. If there is something in the stomach, it will come up. Remember, the stomach has gastric juices in it, it doesn't "empty" like pouring liquid out of a bowl. Many times, people think a baby has spit up a huge amount of a feeding and actually it is not as much as it seems.
Good health, no significant respiratory history
Good weight gain
No feeding refusals-this means that the baby is likely not experiencing pain from esophagitis while feeding

Complicated Reflux...in other words, needs some form of treatment
Blue spells, apnea, respiratory complications
Poor weight gain
Feeding refusals
Pain signs while feeding
Patterned reflux (example: baby spits up 30 minutes after feeding on a consistent basis, Luke had cyclic spells every 6-12 weeks, this is a pattern as well)
Vomiting at night
Gagging (reflux related)
Eczema or rashes
Enamel changes

What can you do to help? Elevated bed while sleeping, making sure the baby is being fed the correct amount each day and not over fed, a bottle that does not lead to excessive air intake while feeding (try a Dr. Brown bottle), pacifier that seals the mouth well. If there are signs of complicated reflux, the baby should be seen by a pediatric GI for assessment. The doctor will determine if medicine is needed or if it is already prescribed, he will see if is the dosage correct. There also may be additional tests needed to further evaluate reflux/vomiting.

Food Chaining Book was reviewed in St Louis Newspaper

2008-04-29T14:41:00.000-07:00

Hi. I just read a review of our book in the St Louis Post Dispatch. It is funny because it sounds like Eliot is my son and that you magically go from french fries, to hash browns to breaded veggies. Hee hee. I told the book people not to put that type of food chain on the back of the book, but no one listens to me....the girl who thought this all up in the first place. But I am just tickled pink that it was reviewed. It still makes me want to throw up, but in a good way. Check it out, the link is under my music.
PS Loved Ewan's stories and new breakthroughs. He is doing so well.

Food Chaining: Learning about Food...Don't Eat My Fruit Head!

2008-04-28T20:50:00.001-07:00

Today was one of those days you wish you could push rewind and do all over again.

So Ewan's therapy session today was supposed to be modeled after his younger brother's session last week: making pieces of fruit look a little like Mr. Potato Heads using various kinds of fruit. Sounds simple enough. Oh yes, deceptively simple!

So Vaughn had a hey day, thought it was the funniest thing in the world to make little fruit like people and then eat them. Stacey and I thought since Vaughn had so much fun, surely, surely Ewan would have an equally great time with the same kind of session. Or so we thought...

We get to session and Stacey and Ewan jump right in with a quick scavenger hunt to find the fruit around the room and divvy up toothpicks to Ewan for each fruit he finds. Ironically enough, the tougher fruits to look at and smell required large amounts of toothpicks as rewards. Armed with enough toothpicks to hold off a small gorilla force, Ewan, Stacey, Vaughn, and I set off to make some Fruit Heads.

Ewan chose an orange, Vaughn an orange, Stacey a banana, and me an apple. We carefully chose pieces of fruit to make eyes, ears, arms, noses, and hats. Then we named them. Oh yes, we named our little Fruit Heads.

That's where everything went astray in that little therapy room.

After we settled on some nice names, we said OK, now it's time to try all the new fruit we used to make our little Fruit Heads. Ewan was HORRIFIED that we were going to eat our new little Fruit Head friends. He may be scarred for life, I'm not sure yet.

Seriously though, this is the kind of thing that can happen when you're 5, when you're a literal thinker, and well, you're Ewan. You just don't eat your new Fruit Head friend creations. Rather, you should be taking them out to dinner, giving them a bath, and finding them a place to sleep at night but whatever you do, you DON'T eat them!

Hint for the day: Next time we decide to make a fruit friend, we won't eat him but rather we'll take him out for dinner and a movie.

Happy Chaining,
Alicia