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

Estate Planning for Children with Special Needs

2011-12-13T15:09:00.001-08:00

http://www.cincinnatichildrens.org/patients/child/special-needs/transition/estate/.
Great website with good resources for our kids. Check it out!

The Infamous French Fry Chain Done the RIGHT WAY

2011-11-11T11:57:00.000-08:00

Accepted Food: McDonald’s French Fries
Initial Home Food: OreIda Crispy or Fast Food Fries (work toward baked on a baking stone for a healthier choice)

If the child likes dips/condiments explore this texture. If the child does not tolerate dip, dry dips (garlic salt, pepper, season salt, Mrs. Dash) can be explored. Take time to do this, don’t offer a new food every day of the week. Allow the child to become comfortable seeing, smelling the new food. Do not rush through food exploration. Think of every new food as you would think of food from a foreign country.

• Fast food french fries with ketchup, ranch dressing, salsa-ranch mix, BBQ, honey mustard or mayo, etc as dips. The child can explore tastes and offer at meals based on the child’s rating of the food item or condiment. Put small amounts of dip in small clear bowls. Let the child look at, smell and explore the dips. The child can choose whether or not to dip. A small paint brush can also be offered if the child wants to 'paint' the new taste on the food and offer to a parent or sibling. Preparing food for others is learning about food.
• Explore fries in different restaurants. Explore McDonald’s hash browns or Hardee's hash brown rounds. Offer a few Tator Crowns (just the tops, crunchier texture) and see if the child can tolerate crunchy tator crowns. Tator Tots may or may not be accepted. Hash browns or fried potatoes may come out of this exploration of this food in time. Do not rush.
• Keep expanding French fry options at home. Try a wide variety of fries. Cook the regular portion of what a child likes and only cook 1 or 2 of the other types of fries. Do not rapidly change.
• Steak fries or potato wedges can be explored and compared to the inside of a baked potato.
• Baked potato (let the child explore toppings and also think of other accepted foods, if the child likes bacon, try crumbled bacon over steak fries or baked potato. You are not trying to get the child to eat a revolving cycle of toppings, you are trying to explore what toppings the child likes. If the child will accept cheesy toppings, cheese can be expanded as a sauce, dip or soup.
• Learning activity: Make mashed potatoes or scalloped potatoes together.
• Work toward acceptance of mashed potatoes with butter, seasoned salt, sour cream and chives or gravy.
• Some children can also keep progressing to Shephard’s Pie or potato and meat dishes.

Language/learning activities: Teach the child about potatoes, how they grow, where they come from, the connection between Ireland and potatoes, this can also be a great geography lesson!

Food Exploration: Let the child explore the food with the senses. Tasting food is the LAST step the child will take. Let the child look at the food, smell it, feel with the fingers and take time to understand the properties of the food. This is why we only cook one or two different fries and put it in the “looking place’ of a divided plate. The child needs adequate time to explore on their own and at their own pace. No pressure approach is very important. Once the food is in front of the child, the food belongs to the child. Do not take control of the child’s eating. Foster independence.

Child Food Chaining Rating Scale:
5=I love this food and I can eat it with Mommy and Daddy at home or anywhere. My favorite!
4=I really like this and want to try more.
3=I am not sure how much I like it but I will try it again and learn more about it.
2=I don’t like this food, I want to try something else.
1=This is awful and I don’t want to eat this. I don’t feel good around this food.

Versus The WRONG way...Do you see the changes are too rapid and don't allow for the child to learn and explore?

Mc Donald's fries (no ketchup)

Fast food french fries with ketchup (What if the child does not like dips or is afraid of it or does not understand what ketchup is?)

French fries with ranch dressing (too big a change, try a lot of fries in the ketchup if the child like ketchup, let the child determine what dips they want to try. Just quickly changing dips is wrong. This is based on the child's rating, reactions and preferences).

Any french fries

Tater tots (may be too big a step, this should be a learning phase and Tator Crowns may be accepted before Tator Tots)

Potato wedges or fried potato slices

Baked potato -with anything on it (No, you can't just jump into baked potato, we teach kids what is inside french fries, steak fries so we can also teach them that this is in a baked potato. If a child can eat baked potato at Red Lobster, the family also has another restaurant to enjoy together. Think about social eating)

Baked potato with melted cheese or bacon bits

Mashed potatoes

Mashed potatoes with gravy (big big jump here...advance only as tolerated)

Pot pie (may never be possible, but Shephard's pie might where the child eats the mashed potato topping a bit of meat)

Link to the Great Suzanne Evans Morris...

2011-11-09T02:18:00.001-08:00

Oh the great Suzanne Evans Morris...I love her therapy and I read everything she ever wrote and attended her course. Here is a link to her New Visions website therapists and parents with a long list of resources from chewing to dealing with silent aspiration. Check it out and bookmark it! http://www.new-vis.com/fym/p-feed.htm

Is it ever safe to cut a bottle nipple? Emphatically...NO!!

2011-11-08T03:57:00.000-08:00

YES flow rate matters! Cutting a nipple is tampering with medical equipment in a hospital. Nipples are designed to stop or significantly slow flow when a baby stops to breathe. A cut in the nipple means there is no stopping place and the infant is forced to lift the tongue against the hard palate to try to stop the flow and survive the feeding. This must be terrifying in a reclined position with your arms tucked into a blanket. The cut is never the same and this is always the way to start a feeding disorder. This has to stop. We are smarter than this. There are products designed to flow faster for thickened feedings but there are cautions all over these products about use with thin liquids (formula or breastmilk). If a baby cannot finish a bottle, they need more time to develop their skills, they do not need you to make the feeding 5 x's harder for them to finish safely. So no to slit or cut nipples, no to poking extra holes in the nipples.
Pick the right products, such as the Dr. Brown bottles level I, Gerber slow flow silicone level 1, Parent's Choice slow flow or Evenflo Classic Response slow flow and let babies have a comfortable flow rate that allows them to maintain ventilation while feeding. Put the baby in an upright, side tilt position and pace the feeding by tipping the bottle down and giving the baby an extra ventilating breath as needed.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2386985/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2386985/

www.txsha.org/_pdf/Convention/...Swallowing%20and%20Feeding%20for%20NICU%20Graduates.pdf

Infant Feeding Evaluation Summary Copyright 2011 Cheri Fraker

2011-11-04T15:40:00.000-07:00

Infant Feeding Evaluation Summary
Parent Guide

Patient Name:_______________________________________________________________________________
Parents Names:______________________________________________________________________________

Feeding Evaluation:
o Review of parent concerns/reason for referral
o Oral Reflexes (root, suck, swallow, phasic bite, transverse tongue, gag)
o Infant Cranial Nerve Evaluation
o Non-nutritive suck (pacifier skills)
o Nutritive suck (feeding skills)
o Lip seal, bottle flow rate
o Swallowing skills for liquids (cervical auscultation of the swallow) Therapist is listening for the opening of the Eustachian tube and upper esophageal sphincter
o Positioning
o Endurance
o Respiration (before, during and after feeding)
o Spoon feeding skills
o Upper airway screening
o Allergy screening
o Reflux screening
o GI function summary

Formula/Breastmilk by Bottle
Recommendations
Before Feeding
o Stimulate root reflex by stroking pacifier or bottle nipple down the middle of the lower lip prior to placement of the pacifier or bottle nipple
o Introduce the pacifier prior to bottle, dip pacifier in breastmilk or formula
o Slight downward pressure to the middle of the tongue with pacifier to improve tongue cupping skills
o Slight upward pressure to the hard palate. This may stimulate the suck reflex
o Lightly traction the pacifier to improve lip seal and cheek strength (2-3 x when offering pacifier, twice daily)
o Swaddling/swaddle lower body only
o Boppy pillow/pillow supports
o Lower lights and less noise while feeding

During Feeding
o Recommended bottle/nipple_______________________________________________________
o Swaddled, upright positioning (gravity will have less impact on liquid flow in the mouth to the throat)
o Side tilt positioning throughout feeding
o Support to head and neck (see photos)
o Chin support (rolled burp cloth)
o External pacing (you set the pace so the baby can breathe and eat comfortably)
o Burp mid-feeding, wait 5-10 minutes after feeding for final burp

After Feeding
o Upright 15 to 20 minutes after feeding (chest to chest)
o Avoid car seat and swing after feedings

Spoon Feeding
o Recommended spoon ______________________________________________________________
o Rest spoon on lower lip
o Perfect bite size is important
o Allow an extra ‘dry’ swallow
o Flavored baby food
o Move to smooth, higher flavored food
o Texture program (chewy spoon for “chewing practice”)
o Move to meltable solids (ex. vanilla wafer, graham cracker, puffs)

Cup Drinking
o Avoid cup drinking for now
o Recommended cup __________________________________________________________________
o Start with drops of liquid in the soft spout of the cup
o Small amount of liquid in cup
o Cold liquids in cup
o Thickened liquid by cup recommended

Additional Suggestions
o Ocean Saline Spray
o Cool mist humidifier
o Elevated head of crib/bed

Treatment Plan
o Feeding product change
o Pacing and positioning program
o Improve pre-feeding skills
o Improve awareness during the swallow (high flavor, cool temperature liquids)
o Swallow study (see letter)
o Referral to RD to try a more gentle formula for better tolerance
o Constipation management program
o Discuss reflux medication trial with your doctor
o Referral to OT/PT
o Referral to ENT and/or GI

Next Appointment: ___________________________________________________________

Therapist Contact Information: ______________________________________________
Notes:_______________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

Thank you,

_____________________________________________________
Therapist Signature

2011-10-19T19:02:00.000-07:00

Laura and I will be joined by Mark Fishbein, MD, pediatric gastroenterologist from Children's Memorial Hospital in Chicago, Illinois for the Food Chaining II course in St Louis on December 2 and 3rd. This is the course we just taught in Alaska. It was very well received and given 100% 5 star ratings from the audience when we presented it in San Antonio. Hope you can be there! If you are interested, contact Art Moreau at www.cepauniversity.com.

$99.00 Discount on TWO CEPA courses with the new You Choose Two Option

2011-08-20T11:10:00.000-07:00

If you decide to attend both the Dysphagia course and our Food Chaining II course (or substitute with any other CEPA course) you will qualify for a $99.00 discount. Go to www.cepauniversity.com for more information.

PreChaining Course: Much to DO about Pediatric Dysphagia

2011-08-12T04:30:00.000-07:00

This course will be at the Omni Hotel in Indianapolis, Indiana. http://www.omnihotels.com/FindAHotel/IndianapolisSeverin.aspx on November 4 and 5th. There is a special rate for CEPA participants. The www.cepauniversity.com website will be updated very soon with dates for both courses (PreChaining/Dysphagia and Food Chaining II/Digestive Tract Disorders). This is our new aerodigestive series for a TRUE multidisciplinary team approach. We will be joined by Sandra Ettema, MD, otolaryngologist and speech pathologist! She leads our pediatric swallowing clinic! The Chaining II course was rated 100% 5 stars by participants in San Antonio (love you guys) and for that course, our dear friend Dr. Mark Fishbein, MD, pediatric GI (Chicago's Top Docs 2011) will be with us! Hope you can be there. We are still working on location for the Chaining II course. CEPA is also offering a new option "You Choose Two" courses for participants interested in a combination of featured lectures.

Aerodigestive Series from Fraker and Walbert

2011-08-07T10:34:00.000-07:00

The “It Takes a Team Series” continues with two new courses from Fraker and Walbert! A complete aerodigestive approach to your most complex feeding therapy patients.

Cheri and Laura will present two new courses in fall of 2011 by debuting a new lecture with Sandra Ettema, MD, otolaryngologist and moving the Food Chaining course to an advanced level with Food Chaining II with special guest, Mark Fishbein, MD, pediatric gastroenterologist.

PreChaining Therapy, The Upper Airway and Dysphagia
“The Much to Do About Pediatric Dysphagia” course will provide instruction on Fraker, Walbert and Cox's PreChaining therapy and rehabilitation of the swallow for older children with dysphagia. This course will also provide instruction on how to write and implement dysphagia chains paired with select specific feeding products to result in effective and successful treatment programs. This powerful course teaches therapists to stop feeding aversion before it starts and how to treat the most challenging children on their caseloads. Dysphagia therapy is much more than thickening liquids and we will provide instruction for the new therapist as well as the seasoned professional. Sandra Ettema, MD is not only an otolaryngologist, but she is also a speech-language pathologist and will provide easy to understand, but vital, detailed instruction about the upper airway and the complexity of swallowing disorders. Cheri and Laura will explain HOW to treat infants and children and provide in specifics in treatment of swallowing disorders. This course is packed with case studies from this team’s work with infants and children. Dr. Ettema works with Cheri and Laura on a daily basis and directs the SIU Koke Mill Pediatric Swallowing Clinic in Springfield, IL

These two dynamic therapy packed courses will be offered in November and December of 2011. The pediatric swallowing course and the recently debuted and extremely popular "Food Chaining II" course can also be selected in CEPA's new "You Choose 2" education program.

Food Chaining, The Digestive Tract and Digestive Tract Disorders
The Food Chaining II Course: Digestive Tract Disorders and Cheri and Laura will be joined again by Mark Fishbein, MD, pediatric gastroenterologist, from Children’s Memorial Hospital in Chicago, Illinois. This course was rated a 5 by 100% of the participants at it’s debut in San Antonio, Texas. Dr. Fishbein is also a co-author of “Food Chaining: The Proven Six Step Solution for Problem and Picky Eating.” He worked with Cheri and Laura and was part of the Springfield, IL feeding team for 10 years. Dr. Fishbein was just named one of “Chicago’s Top Kid Docs” for 2011. The course will focus on treatment of infants and children with a range of gastrointestinal disorders.

These therapy oriented courses are designed for all health professionals interested in pediatric nutrition and feeding disorders. The goal of presenting this series is to provide in depth instruction and understanding of the complex, whole body challenges involved in treatment of infants and children with feeding disorders.

Junk? Nope.

2011-07-14T06:48:00.000-07:00

One of the biggest criticisms of Food Chaining is that we teach children to eat junk food. That may seem correct to those who have not been to our courses or understand the process fully. Our program was featured in The Journal of Clinical Nutrition because we lead children to healthy eating and diets that contain meats, breads/grains, dairy, fruits and vegetables. Our patients eat without being forced, coerced, pressured or stressed. We customize diets of all our patients to help them reach their full potential. I have treated children, even with autistic spectrum disorder, who now have diets that contain broccoli, spinach, fresh fruits, steak...a far cry from the days of popsicles, gummy bears, milk, crackers and chips. The reason our program works is because we start where the child IS and not only expand the diet but teach children HOW to eat these more complex foods. We use those flavor preferences and early texture preferences to design a customized feeding program and expand the diet at the child's pace. Isn't it more likely that the child who eats chicken nugget will accept fried fish, scallops, popcorn shrimp and breaded pork tenderloin before eating baked fish/chicken, roast and steak? But we use dips and condiments and seasonings to work toward those foods and help the children feel safe and confident eating these foods. Doesn't it make sense that a child who loves chocolate could accept fresh fruit dipped in chocolate until we can fade that masking flavor and help the child enjoy the actual taste of fruit? There is no "junk food" unless we are talking fried butter, food is of higher or lower nutritional value. Variety in the diet is key to breaking the patterns of picky eating. The ritual of eating the same thing over and over is much more harmful than eating popcorn shrimp. Selective eating is not just a preference for "junk food" it usually a reflection of the child's immature chewing and swallowing skills. A bite of a goldfish cracker is a very different chewing and swallowing event than a bite of filet mignon. A feeding specialist must start with success and help the child enjoy each trip to the table to avoid anxiety, fear, anger, stress and dysfunctional and destructive interactions at the table. Food Chaining works when done correctly and with eyes that see the current moment as well as a child's potential.

Magic

2011-07-01T05:42:00.000-07:00

Dr. Fishbein's nickname for me is "Tinkerbell" a reference to my work with children being magical in nature. What a lovely and humbling compliment. Truth be told, there are few things in this world that I truly do well, but this is just something that comes easily to me.

This week, I had a session that was truly magic. A few years ago, I met a wonderful young family with a little one who had a lot of fear at the table. At the time I told them that I believed their son had a GI disorder and needed assessment and treatment to be successful at the table. Frankly, they did not buy into my assessment and we did not see them for two years. Fast forward to today and their son is not only rejecting new foods but losing foods in his food repertoire. All he wants is milk. Milk that coats and soothes an angry GI tract but in high volumes can lead to diminished appetite and health issues, like anemia. They came to clinic again and I told them I would treat him only with a multidisciplinary approach and if they would agree to follow my intervention plan with a three month review of where we were at that time. I told them that if I started treating him while he had an active, untreated GI disorder he would not make progress. They agreed and the GI assessment revealed that the child did indeed have a GI disorder. So now, we were truly in a place where I could help undo the damage that eating with pain causes. The parents had also implemented a strict behavioral approach but they had been very inconsistent in how they interacted with their son at the table. "Leaning on their own understanding" had not worked for them and they were ready to accept help from our team. We paired GI meds with a gradual decrease in milk to improve appetite but not take away what this child needed (the coating effect of milk) to ease his angry GI tract. The medication became the substitute for the milk and we were now ready to work in fertile soil, where change is not only possible, it is lasting. I just had to deal with how to bring him back from 2+ years of a very negative experience.

Both parents came to our first session. I had told them to have their son help pack a lunch box of small portions of 2 foods he liked and one he wanted to learn about, but they forgot to do that. They showed up with only a cup of milk. They were pretty overwhelmed and I told them not to worry. I went to the kitchen in our department and came back with two types of divided plates (school tray style and character plate) and a bowl. I had my cues cards of what to say at the table and what to drop from your vocabulary (do NOT say "take a bite"). I also had two little boxes of cereal, a waffle, a little cup of syrup and a variety of utensils.

The child was clinging to his dad and they both were sitting across the room from me. I sat at the little table and talked to all of them and every once in a while made eye contact with the child and smiled. I made it clear that no one would make him eat, we were just going to have fun. I asked Dad to move his chair up closer to the table and still hold his son on his lap. Mom sat in a small chair beside them at the table and I was across. Space is important, I am new to this little one and we need time to get to know each other. We opened the boxes of Apple Jacks and Corn Pops, these are new foods for him. I started putting pieces of cereal in the sections of the divided plate. I asked the child if I should put the cereal on the big tray or on my astronauts on other divided plate. He pointed to the big tray. I started trying to shoot a basket with the cereal across the table to the tray in front of him. One bounced out and he looked at me and giggled. I told him I didn't know cereal could bounce! He slid out of his father's lap and stood at the table. We started playing together putting the pieces of cereal on the tray. I told mom and dad a bit more about sensory exploration and that must happen before putting food in the mouth. We needed to learn about this new food with our hands first and I demonstrated making crumbs. I crushed cereal into tiny pieces. I put some on the astronaut and his father (who quickly caught on) said, "see we can make moon rocks!" The child and his dad started crushing cereal, breaking them in half and laughing. Bye bye anxiety, now we can go somewhere. I started stacking up the Corn Pops and I showed my new little friend that Corn Pops are sticky. I stuck one to my finger and it did not fall off. He giggled again. We put some of this cereal on the trays and continued crushing and crunching and he was exploring and interacting and learning about two new foods. I told the child and his dad that we could just put our fingers in the crumbs and taste one. Dad did it and so did the child. No one said anything or yelled "yeah" or anything, we just kept the ball rolling forward. I told his dad that it is also fun to crush the cereal with your teeth. The father picked one up and bit into it. So did his son, who said, "mmm, that is good." We decided Mommy needed to try something fun and we cut our waffle into pieces. Then we started scooping tiny amounts of syrup into each little square of our waffle. The child immediately started doing this and then put Apple Jacks on the sections. I shared with the parents earlier that sometimes I put blueberries in the sections of the waffle and someone was listening to me! We had a lot of fun scooping, dipping, crushing, crunching and then as parents and I talked more, the little boy dipped his finger in syrup and continued to eat cereal and drink his milk. We didn't "do anything" and he was eating. I just pointed over in his direction and mom and dad looked at each other in amazement. He kept saying, "mmmm, that is good" and "I like this." We got a bunch of big stickers out and selected some good ones to reward such bravery. He is going to use a new sticker to help me know when he learns about a new food. When it was time to go, he didn't want to leave. Magic.

This week he will explore the produce section in the grocery store and find a food to learn about. He can pick a color of food or find something that looks interesting to him. This week he is in control of eating, he will explore with his senses and in his comfort zone. We will expand foods like breads/grains that should be much easier for him to tolerate from a sensory standpoint. The focus will not be on taking a bite, but taking a step toward the table. Our primary goal will be enjoyment and peace at the table. One good experience leads to another good experience, making the chain of success. He will not be punished, he won't be sitting at the table for two hours, he won't be holding food in his mouth for an hour instead of swallowing it, he won't dissolve in tears at the table. The plate at mealtime will contain one food he really loves to eat in ONE section of his new divided plate. The portion will be slightly smaller than normal. He will also be given a small portion of a food he is OK with eating and one tiny portion of a new "learning" food. He will give ratings to his food 1-5 so I know how he liked it (rate appearance, smell, texture and/or taste). He will drink one serving of flavored milk in the morning (as kids with GI disorders usually don't like to eat well first thing in the morning) and he will have a morning snack later at school. He will have one Carnation Instant Breakfast at lunch at daycare as he usually cannot tolerate eating in this environment and has gone all day without food. Food will be offered but the CIB will be there as a support until he can eat at school too. I am reducing his milk and giving him micronutrients he needs. Plus a bit of weight gain will help fuel his appetite. He will be offered six mini meals per day. Food will be offered for a short time and he will not be pressured to eat. At night he will have dinner (usually a very hard meal for him) and one before bed snack. He will get his Pediasure to supplement his diet and help hold him comfortably overnight.
I think he is going to soar in treatment now. Mom and Dad understood the approach and I gave them a progression of sensory exploration activities and tips to make tasting fun, and eyes to see when their son is ready to do so. The joy of eating is truly magic and hopefully this little one will learn to enjoy not endure meals. Do you see that is so much MORE than just combining similar foods. Happy Chaining!

Simply Thick Warning

2011-05-23T11:31:00.001-07:00

SimplyThick: Public Health Notification - Risk of Life-Threatening Bowel Condition

AUDIENCE: Consumers, Pediatrics, Emergency medicine

ISSUE: FDA notified parents, caregivers and health care providers not to feed SimplyThick, a thickening agent for management of swallowing disorders, to infants born before 37 weeks. The product may cause necrotizing enterocolitis (NEC), a life-threatening condition characterized by inflammation and death of intestinal tissue.

BACKGROUND: FDA first learned of adverse events possibly linked to the product on May 13, 2011. To date, the agency is aware of 15 cases of NEC, including two deaths, involving premature infants who were fed SimplyThick for varying amounts of time. The product was mixed with mothers’ breast milk or infant formula. Illnesses have been reported from at least four different medical centers around the country. The illnesses of which FDA is aware involve premature infants. SimplyThick was added to the feeding regimen of those infants, who later developed NEC, to help with swallowing difficulties stemming from complications of premature birth.

The product is sold in packets of individual servings and in 64-ounce dispenser bottles. The product can be purchased from distributors and local pharmacies throughout the United States.

RECOMMENDATION: Health care providers should stop administering the product to premature infants. Parents and caregivers who have questions or concerns related to the use of the product and/or who have medical concerns should contact their health care provider. See the photographs at the link below for images of the product.
Read the MedWatch safety alert, including links to the Press Release and product photos, at:
http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm256257.htm

The Graz Method of Tube Weaning: NoTube.at | because we care about children

2011-04-23T11:01:00.000-07:00

NoTube.at | because we care about children

The Graz Method AND Pre-Chaining

2011-04-23T11:00:00.001-07:00

I am going to be part of a tube weaning using the Graz method. The patient has seen me since age 2m and the PreChaining therapy program has been extremely successful. This child has the skills to eat above age level for solid foods and dysphagia for liquids has resolved. There were numerous challenges throughout this first year of life, yet amount of food accepted is impacted by the tube feedings. We will formally work with the Graz team over a one to two week time period. I will continue to post general information about this program that has a very high success rate. I am not anxious about it because of the PreChaining program. For more, see the link about the Graz method.

What should I DO at the table? In a word...

2011-04-23T10:40:00.000-07:00

OK....You have had your child checked by a good and reputable team to rule out GI disorders and other medical based issues that can derail successful eating. Your child has no swallowing problems, no airway problems, no GI issues and no major nutritional issues. Maybe some mild sensory issues, but nothing major. The dietitian has told you that things are not that bad and you are actually dealing with persistent pickiness only... Now, what should you do?

NOTHING.
Let me say it again...NOTHING.

Now most of you and shaking your heads and getting ready to pull your hair out, but I will tell you after doing this for 24 years, that is the best advice I can give you. Stop thinking about it all the time. Offer food on a plate, offer a variety of food, use the ideas of food chaining of offering food similar to what your child already eats and build on tastes, textures and help teach and offer learning opportunities for your child but at the table? Do NOTHING.

You cannot, should not and will not succeed by taking control of another person's eating. You must offer food/liquids on a schedule that helps stimulate appetite and then... eat your meal, talk about anything else but how your child is eating, take the words "take a bite" out of your vocabulary and leave the child to decide what to eat or not to eat. Understand child portions and eating patterns. Most kids don't eat well and vegetables are an acquired tastes. Ultimately, it is the child's decision to eat that matters.

If he chooses poorly, he experiences hunger. There are some kids who do not feel hunger or have dysphagia, but that is why the medical feeding team is needed to identify those kids and a different set of intervention strategies are needed for problem eaters. But uncomplicated picky? Do NOTHING.

Pressure does not work. Force does not work because it will always turn around and bite you in the end. Providing is your job. Eating is the child's job. Do not give the child the spotlight at the table, don't let them pull your strings by how they eat each day. Calm yourself as much as possible. Go scream in the backyard if you need to, but don't feed into this. Pun intended.

The true picky eater without problems is out there and most of them come out of it on their own. The problem eater needs our help. There is a difference. But picky can become problematic and emotional and stress laden and behavioral. Don't let it. There is power and action in restraint. Deep breath. This too shall pass.

The Advance...Food Chaining made the April 4 Cover Story

2011-04-23T10:05:00.001-07:00

Helping Children with Feeding Disorders Expand Their Diet
By Jason Mosheim

Posted on: April 5, 2011
View Comments (0)Print ArticleEmail ArticleShare
Vol. 21 • Issue 6 • Page 6
Cover Story

When the ultimate goal of a program is to find joy in eating, who could argue? Food chaining is an approach to help children expand their diets by using their favorite foods or drinks as a launching pad to gradually beef up their eating repertoire. Developed by Cheri Fraker, MS, CCC-SLP, with Laura Walbert, MS, CCC-SLP, of the Koke Mill Medical Center, in Springfield, IL, and Sibyl Cox, RD, LD, of the Southen Illinois University School of Medicine, food chaining complies with best practices for treatment of feeding disorders.1

About 25 percent to 35 percent of children, including those developing typically, have a feeding disorder of some kind, according to Fraker. However, more than 70 percent of premature or medically fragile children have a feeding disorder, and up to 90 percent of children with cerebral palsy have a significant feeding or nutritional problem. All of these children are candidates for food chaining.

"The main goal of food chaining is to expand the diet and have children eat food from all food groups. Not necessarily all foods, but food they enjoy," Fraker told ADVANCE. "Enjoyment is one of our biggest goals."

Best practice guidelines recommend a low-pressure approach to feeding. Clinicians need to provide children with multiple exposures to food, become familiar with the swallowing aspect of feeding, and understand some children lack certain skills to eat some foods. They may appear picky, but in many cases they are probably avoiding particular foods because they don't know how to eat them successfully.

Speech-language pathologists should study carefully what the child eats-including tastes, textures and aftertastes-as well as the child's chewing patterns and expand on all of them. "My belief is children eat the crunchy crackers and chips not just because they like them, but because they only have the skills to eat those foods. They eat those foods because they can breathe around them or they are successful. I don't necessarily think they love those crackers," she said.

In food chaining the clinician put foods in an order and builds the child's oral motor skills. "We have to develop flexible oral-motor skills," Fraker said. "These kids literally do not know how to sequence the motor patterns to eat food of different textures. For example, with a challenging food like meat, you need to stabilize the bolus of food inside of the cheek, chew a piece off, and then swallow a portion of it and repeat. We teach the mechanics of eating different foods. I tell them, 'You drink soup differently than you eat a pretzel, mashed potatoes or a steak. If you use the same pattern over and over with those foods, you'll gag, choke, and be unsuccessful.'

To put food in order, speech-language pathologists first must look at a child's core diet. What do they eat? What are they good at eating? A food is considered part of the core diet if a child can comfortably eat at least a portion of it and not just one or two bites.

Clinicians also should study the child's upper airway system, too. Are the adenoids enlarged? Is the child swallowing well? Is the child handling everything well? Could the child begin to head down the right path if the clinician expanded the intake of breads and grains? For example, children can be given a banana or apple bread to expand fruit flavor in a texture they can handle. The clinician then can start working to progress the chewing process.

Ewan, who has autism, dysphagia and eosinophilic esophagitis, was eating just 10 foods when he started food chaining. He now eats all foods, including a wide variety of meat, fruit and vegetables.

"I might go after dried fruits at first. I tell them they are a little gummy or a little chewier, and I show them where to put it in their mouth, what their tongue does, and where it moves the food," she said. Fraker sometimes uses puppets to model the process.

She also may put children on a therapy ball and bounce them up and down as though they were a piece of food in their mouth. "I say, 'We push it to the side,' and I take them to the side of the ball. Then I say, 'We push it to the middle.' I teach them the big motor plan."

Food chaining also utilizes the "Get Permission" approach developed by Marsha Dunn Klein, MEd, OTR/L, as well as her ideas of "mouse bites" and "elephant bites." "I expand the flavor of food before I expand the texture of food," Fraker said. "I just want to get kids tasting something new in a way they can handle. I don't want them gagging on the texture or not being able to chew it. I want them to experience it and see what they like."

For children with feeding disorders, the introduction of new foods can be a very frightening experience, she said. "They are very scared. When you bite into an orange, you bite through skin. You have this white stuff on the outside, and all this juice comes out. They are dealing with two food consistencies, liquid and fruit, and they never stay the same. The food is complexly textured. It becomes mushy, and they don't know what to do with it."

She instructs children to bite into the fruit and drink the juice first. "I've had kids standing up, tipping their head down, trying to let the juice run forward in their mouth," she said. "I tell the parents they want the fruit; they just don't know how to do it. Once we teach them and they have the confidence, the food chaining takes off because they feel, 'I can do this, and I can be safe.' They can really explore flavor and then more textures."

At the beginning of food chaining, clinicians need to be aware of any gastrointestinal issues or food allergies children have. Can they digest certain foods, or do they experience severe constipation? Do they have reflux esophagitis or an eosinophilic disorder? "We need to know the signs of those disorders and when to refer," Fraker said.

The next issue is nutrition. Are children growing? Are they getting enough micronutrients? Clinicians need to consider the sensory side of feeding.

Lucy was a 27-week preemie with severe allergies, adenoiditis, dysphagia and severe aversion. At 11 months, she is now eating a wide range of foods and working to transition off her g-tube for liquids.

Take special note of a child's behaviors. Only 3 percent to 12 percent of children have a purely behavioral feeding disorder, yet over 90 percent of what people do to treat it is behavioral, she said. "You've got to build oral-motor and sensory skills, and you've got to get the body feeling well, or the child is going to say 'no.' It's not a behavioral 'no,' it's a 'No, my body can't handle this.'"

After reviewing a child's swallowing, it's time to focus on food. "We break down food for therapists so they can offer a food matching a child's oral-motor skills, swallowing skills and taste texture preferences," she said.

Clinicians can scare children when they change food. For children with autism, a change in food can be like a bug or a hair in our food. "They go into panic mode, and that can interfere with appetite," Fraker said. "You want to teach the child to handle the changes and let the child be in control of their food."

It's important to customize food chaining to each child. In fact, it's the only way.

"I tell people all my kids are snowflakes-their eating issues are different," she said. "We tell therapists to trust their skill and develop eyes that see. They shouldn't feel like they have to do a cookie-cutter approach because they won't be successful. They have to zoom in on what's going on."

There are three techniques involved in food chaining that put children on the path to success:

flavor mapping,
transitional foods and
flavor masking.
In flavor mapping, speech-language pathologists map out a child's favorite flavors. Are they all sweet? All salty? Then they need to figure out ways to expand the child's flavor menu. A child who only likes salty crackers, for example, might want to try to eat a Club or Ritz cracker that is slightly sweeter.

"We start a progression by trying to introduce them to a range of flavors. We might put a tiny amount of food on their tasting straws or their finger and see what they like," she said. "Then we rate the child's response to the new food from one to 10. How did it taste? Is it a one, a five, a 10? We keep track of that and offer more foods like the higher-rated items."

In the second phase, which involves transitional foods, clinicians can ask children to take a bite of a familiar food, such as bread, followed by a bite of a new food. "You taste a food you really like and then try a bite of a new food, and we go back and forth. I've done that with drinks, too, to kill the aftertaste for kids," she said. Some children with autism have reported tasting a new food for days because the aftertaste is so strong.

Flavor masking is when the clinician dips a new food in a flavor the child likes, such as ranch dressing or barbecue sauce. "I will dip foods and say, 'You're going to taste your ranch dressing first, and then tell me what you think about the rest of the food.' We work progressively to decrease the amount of the dip," Fraker said. For children who don't like dip, clinicians can use "dry dips," such as garlic salt or cinnamon sugar. "I have one little boy with autism who will eat anything now if I put Mrs. Dash on it."

The rating scales in food chaining can help speech-language pathologists find the right direction for therapy. "When the kids rate food, I tell them, 'This helps me continue to make a map for you.' They may surprise me. Kiwi might be a 10 when I didn't expect that. I'm going to go in that direction with them," she said.

It's important to let children know they are in control. Not only does it lead to more success, but it increases the trust level.

"It's not healthy to take control of someone's eating because it can spiral into an eating disorder of another kind," Fraker said. "Once I put food in front of them, it belongs to them. I don't try to force them, and I never say, 'Take a bite.' I model, and I let them feel that control and trust because that is absolutely key. I have expectations for them, and they know that, but I don't let it become a battle. I always try to leave on a success."

Planning themes is a big part of food chaining. One day might be Baseball Day, with a focus on the foods found at a ballpark, while the next day could be all about Hawaii. Other themes could focus on crunchy or spicy foods or the colors of foods and drinks.

"When I wrap it up in a theme of language and learning, they calm down. Food is so dynamic," she said. "Food can be melted, and it can be sliced. There's so much language involved in it, and it's so social. I have a little boy who puts peas on a toothpick. He loves Star Wars, and we talk about Star Wars the whole time. I combine feeding and language therapy."

She tells parents eating should be enjoyable. "In so many of these kids, there's no joy in eating because it is too hard," she said. "We try to build confidence and enjoyment to help children become healthy eaters for life."

Reference

Lumeng, J. (2005). Is the picky eater a cause for concern? Contemporary Pediatrics, March 1.
Resources

Fishbein, M.,, Fraker, C., Cox, S., et al. (2004). Food chaining: A systematic approach for the treatment of children with eating aversion. Journal of Pediatric Gastroenterology & Nutrition, 39 (S51).
Food Chaining with Cheri Fraker and Laura Walbert, http://cheriandlaura.blogspot.com
Fraker, C., Walbert, L., Cox, S., et al. (2007). Food Chaining: The Proven 6-Step Plan to Stop Picky Eating, Solve Feeding Problems, and Expand Your Child's Diet. New York: Da Capo Press.
For More Information

Cheri Fraker, fraker.cheri@mhsil.com
Jason Mosheim is Senior Associate Editor at ADVANCE. He can be contacted at jmosheim@advanceweb.com.

My Battle with Food

2011-04-23T09:44:00.001-07:00

I love food, yet food and I have been enemies literally all of my life. I fit no mold, I am negative for food allergies, celiac disease, eosinophilic esophagitis and a variety of other GI disorders, yet the result of eating for me =pain and a general feeling of ick. My diagnosis in my own mind as a feeding specialist, is inflammation. I have a general inflammation, auto-immune complex. I have polycystic liver disease and thankfully I am negative for polycystic kidney disease. I have cysts in my liver, pancreas and lung. I am allergic to most of Illinois (off the charts environmentally) and react to medications in small ways and big, life threatening ways (v-tach). I just had a big ol' renal work up because I am becoming puffy. Retaining fluid and it is inching my blood pressure up and making me feel, well...ick. My doctor thinks I am becoming increasingly reactive to the world around me.
At times, I am tempted to run an NG and live on Elecare for a month and start all over again. I need to do something. What I don't know. I do know that the things my allergist suggested have been the closest to working and actually kept me alive this spring. No big respiratory illness this year and that has only happened probably 5 out of my 48 years.
What should I do? Become a vegan? Try an elimination diet? Talk to my good friend Dr. Fishbein and the amazing Sibyl Cox, RD to see what one does for inflammation. Inflammation friends can lead to many many whole body complications.
How many other "ick" people are there like me? How many kids? This impacts my mood, my sleep, my focus, my joint pain, my energy level...the gut and the brain are linked, completely linked and in ways we cannot imagine. I need a neurogastroenterologist and a new treatment plan. I am much more than an IBS patient, I need to ponder this more and come up with a treatment plan for myself. I have had inflammation of my heart twice, inflammation of my lungs which left me with scary dyspnea and multiple scans due to fear of a pulmonary embolism, now renal system inflammation and all the GI stuff too. It is tough for an Irish redhead to live the in this world. http://my.clevelandclinic.org/symptoms/inflammation/hic_inflammation_what_you_need_to_know.aspx

From The Second Brain...
Down the road, the blossoming field of neurogastroenterology will likely offer some new insight into the workings of the second brain—and its impact on the body and mind. "We have never systematically looked at [the enteric nervous system] in relating lesions in it to diseases like they have for the" central nervous system, Gershon says. One day, perhaps there will be well-known connections between diseases and lesions in the gut's nervous system as some in the brain and spinal cord today indicate multiple sclerosis.

Cutting-edge research is currently investigating how the second brain mediates the body's immune response; after all, at least 70 percent of our immune system is aimed at the gut to expel and kill foreign invaders.

U.C.L.A.'s Mayer is doing work on how the trillions of bacteria in the gut "communicate" with enteric nervous system cells (which they greatly outnumber). His work with the gut's nervous system has led him to think that in coming years psychiatry will need to expand to treat the second brain in addition to the one atop the shoulders.

Hey Chicago, Here We Come! Food Chaining and Get Permission Approach

2011-03-08T17:36:00.000-08:00

We would love to see you at our conference in Chicago on May 13 and 14, 2011. Laura and I will be joined not only by the wonderful Marsha Dunn Klein, OT extraordinaire, but we are also going to have a special evening with Mark Fishbein, MD, pediatric gastroenterologist at Children's Memorial Hospital in Chicago, IL. Dr Fishbein will present a lecture on GI disorders and feeding. He will also have a question-answer session with the audience. The course will focus on using Food Chaining and Get Permission approaches together in treatment. PreChaining and treatment for premature infants throughout the first year of life will also be discussed. Great course, great information, wonderful location with great shopping. Hope to see you there!
To register, contact www.cepauniversity.com or email cepa@mtco.com for more information.

This advanced course will combine the best of two treatment approaches that focus on dealing with feeding aversion, food refusal, and understanding aversive behaviors. The “Get Permission” approach builds a foundation of trust in the feeding relationship and supports children who have sensory mealtime challenges to eat with enjoyment and confidence. Food Chaining© programs emphasize multidisciplinary evaluation and non-threatening, child- centered intervention based on analysis of the child’s food preferences. The work- shop is filled with practical mealtime and treatment suggestions. DVD cases will be used throughout the course to maximize the learning outcomes. Mark Fishbein, MD, will present “Feeding Disorders in Infants and Children: A Peds GI Approach”.

WHERE: Oak Brook, Illinois Feeding Course - Doubletree Hotel
WHEN: May 13 & 14 Doubletree Hotel 1909 Spring Road, Oak Brook, IL
PARKING – complimentary
LOCATION – just across the street from Oak Brook Mall shopping/dining extra- ordinaire! (www.oakbrookcenter.com) for directory of stores and restaurants); Near Container Store, I-294, I-88, and I-55.
ACCOMMODATIONS
Doubletree Hotel
1909 Spring Road, Oak Brook, IL 630-472-6000 HOTEL DIRECT$ OR 800-222-TREE Rates: $105$ single or double includes breakfast buffet
$ When reserving a hotel room, identify $ yourself with CEPA to obtain this rate.
Cutoff on rooms: TBI: April 14, 2011 Feeding/Voice: April 29, 2011
HOTEL AMENITIES – lovely suburban hotel with indoor pool, fitness center, and the Oak Brook Mall within walking distance.
ARRIVING BY AIR?
Fly into O’Hare or Midway Airports American Taxi from O’Hare = $35 (est.) 847-255-9600 City Suburban Taxi from Midway = $40 (est.) 630-689-6299
CONTINUING EDUCATION RECOGNITION
Each participant will receive a certificate documenting attendance and CEU’s and/ or
contact hours/clock hours/PDU’s. (see specific courses for exact amount of CE credit).
For SLPs ASHA CEU's
Additional Continuing Education Approval by:
• Commission on Dietetic Registration CPEULevel3=14hours
• CaliforniaBoardofRegisteredNursing–#CEP12564
• Illinois Department of Professional Regulation for Occupational Therapists
Occupational Therapists– CEPA is approved by numerous state Occupational Therapy licensing boards and therefore these courses meet all CE requirements of NBCOT. (Note: NBCOT does not accredit or preapprove CE courses.)
Illinois Early Intervention Program
approved for 14.5 hours (11.5 = Intervention, 1.5 - Atypical, 1.5 = Assessment)

Effective Treatment for Feeding Aversion and Dysphagia

2010-12-17T00:53:00.000-08:00

Treating Children with Feeding Aversion and Swallowing Disorders-Copyright 2010 Fraker and Walbert. This is an excerpt from our upcoming book #3.

Remember, Food Chaining is a six-step program. Oral motor swallowing skills must be adequate for your child to make progress!

How do you help children with oral motor or swallowing problems become skilled and confident eaters?
For day-to-day therapeutic meals and snacks at home, my goal is to work on the motor sequences of eating. I suggest that parents read my Food Chaining blog and Food Chaining Facebook page for additional tips and then try this out at home. What does “treatment at home” look like? This is not nearly as daunting as it sounds. The swallowing part is customized to each child and I do a complete assessment, including swallow study and assessment with our otolaryngologist. A g-tube may be needed and may be our lifeline as it gives us time to work safely on skills. For swallowing therapy, I will select products to help the child overcome their challenges with dysphagia. I teach them how to be safe. I may start with single drops of liquid for some children and work up from there. It also does not matter what cognitive level the child is at, feeling safe is a great teaching tool. Don’t underestimate kids; they will rise to the challenge. Just because a child is non-verbal don’t assume they don’t learn and learn well. WE just have to be more creative in how we facilitate their communication and learning.

How often, how many times per week? Generally speaking, I usually have parents try to do a food fun activity at a snack time once a day to at least 4 times a week. This should not be work, everyone should have fun AND it is not about how often but how pleasant the experience is for the child that really matters. Put the pressure behind you, amount does not matter. Kids will eat and drink more as they become more skilled. Remember just using the right feeding products is treatment every time your child eats or drinks.

Why do you say a child has to develop a repertoire of FLEXIBLE oral motor skills? Each food has a different set of challenges in regard to how to chew and swallow safely. Each product you drink through requires a shift in your skills; can you purse your lips like you do for straw drinking when you drink from a coffee mug? No. What if you approached eating chicken noodle soup the same way you approach eating a Big Mac? You would not be successful and you would have a wet shirt. Do you drink water the same way you drink a thick milkshake? No! You have to be FLEXIBLE with your oral motor skills. Think of a skilled gymnast, they have to be able to shift from floor routine to high bars to balance beam. If they tried to do all things the same way, it would not work. Foods vary widely in texture and we chew foods in different ways, so oral motor/feeding skills are very much like gymnastics. A skilled therapist helps TEACH kids to eat and drink safely and with confidence.

OK Cheri, how do you have fun with food, food has always been terribly stressful for us?
Well, start down the right road starting today. You must understand the scope of the problem to treat it. Stress and pressure do not help. Would someone pressuring you while you are trying to walk on a balance beam help or hurt you? Kids have to chew/drink and swallow and clear the pharynx in one second. Pretty challenging stuff! Think how your child feels at the table. We need to understand what is happening to help in an effective manner. Many children eat simple crunchy foods because they don’t have the skills to eat the other foods well. Maybe the child can’t breathe through his nose. Put a clip on your nose and try to eat a pork chop. It isn’t easy is it? The child may be picking foods he can breathe around as he munches his food or he takes very small amounts of liquid so he can get air again. He doesn’t know how to chew or drink in a sophisticated manner. For this child, “picky” may not be the issue. Kids who munch look a lot like Pac Man when they eat, they use only an up and down pattern that likely started from bottle-feeding by munching instead of truly sucking. If you approach steak like Pac Man, you will choke to death. Kids eat what they have skills to eat. Texture and taste matter too, but this is a key issue. So, we need to figure out what came first Picky or Pac Man? This is MUCH more complex than it seems.

Tell me more about Picky Eating
By the way, I HATE the label picky eater. It sounds like a bad kid with an indulgent parent and it does not describe the problem(s). I prefer to use the term SELECTIVE eating. Kids select the foods they can eat and feel safe eating. Your child may not eat goldfish and chicken nuggets just for the flavor or texture; he may do it because he has no other choice. So go back to that idea of being a gymnast, your child can only do “floor routine” (munching) and he may lack the skills for eating more advanced textures. This is also why force-feeding does not work. My job is to help your child develop the higher level, flexible oral motor skills. Food Chaining allows me to put foods in a sequence based on your child’s skills. It is much more than color, taste and crunch….it is much more complex. These are the reasons why each child’s Food Chaining program is customized to their individual needs.

Examples of Food Fun Activities
Here are some sample ideas of food activities for home. With food, go to the cabinet or to the store, pick something out and figure out HOW to eat it. Use a mirror or camera, take digital pictures for feedback. Remember, treatment is daily with my programs, just by letting me select the right products to match your child’s oral motor/swallowing skills=daily treatment. Do what I ask of you and don’t push beyond. Pushing does not equal success. You have to trust that I have your child at a place where he is safe and I will determine when it is ok to do more. So remember, much of the work of this program is going to be done for you as every time your child eats or drinks. With the right flow rate, a child is treating himself when drinking, with chewing on the DuoSpoon your child may soon be able to tolerate textures and he will learn more about the mouth. The DuoSpoon improves chewing skills, reduces gagging and helps a child develop the ability to make sense of what is going on in the mouth. Food cut in narrow strips helps kids learn to put it under the teeth. Teaching the skills of eating helps us show kids to “sweep” food over to the teeth with the tongue. We teach them HOW to chew this way. We make the bite sizes very small and work up in size as the child becomes more confident and skilled. With the regulated flow of the cups, straws I issue to the family and cold sensory loaded liquids in single swallows, therapeutic feeds or amounts that I feel are safe, liquid intake should improve quickly. We are working the muscles of the mouth, improving awareness of the sensations inside the mouth, giving a flow rate that does not flood the mouth or throat and making it cold, sour and/or carbonated so the swallow triggers faster. This IS treatment. My friend and colleague Alicia Hart does a Favorite Food Night with her family. That night there are no rules and each family member designs their own meal. I think that is a great idea. Joy is the key to the success of eating; help kids find the joy at the table. Put down this burden once in a while. Daily success and feeling safe at the table will successfully treat the child more than anything else.

I have fun with the kids showing them how to start looking at a bite of food and trying to figure out if they have to kiss it goodbye (purse the lips, activate the cheeks), chew it like a little puppy dog or really chew it like a T-Rex and crush it with the teeth. This helps them get the motor plans down. Cut fruit in little pieces from mouse bite to bunny bite (mandarin oranges are great for this and put colored toothpicks in the cut fruit), see if your child can squeeze the juice out of the bite and swallow it first. Work up in bite size as tolerated. This is fun and easy, but works really well.

I get little fruit cups and we go “fishing” with our toothpicks in therapy. Then the kids use plastic knives to cut the piece of fruit in sections and they use the toothpicks as their utensil (great for fine motor too). They learn where to put the food in the mouth, how to bite and swallow the juice, then they learn to bite a few times more and swallow the juice again and then swallow the rest of the bite of food. This is good to practice with orange, pear, pineapple, watermelon or any watery fruit! I also get Jell-O cups and we turn them upside-down and make a Jell-O mountain. If we have the ones with fruit inside, we figure out how to eat both as Jell-O melts into liquid and fruit usually remains pretty solid. We figure out if our mouth can figure out how to do two things at once! Cool Whip on top is fun too (put snow on your mountain!)

Don’t forget to think about sprinkles to add texture to your fruit. Wilson’s cake sprinkles are fun to add to bites of fruit. You feel the crunch but don’t have to swallow a hard solid texture. Dips may also help the child deal with taste and texture too (watch the video on my Facebook food chaining page from Alicia Hart about dips, I had her son use them and she did a talk about them for her class at Eastern Illinois University). Dips can be wet or dry (powdered sugar, garlic salt, cinnamon sugar). Have fun with the your food and liquid activities. Shaved ice or using an ice chip to dip in juice is a lot of fun too. Make your own popsicles or flavored ice cubes with juice. There are straws that connect to make a very long straw and that is great fun for oral motor and liquid activities.

See how much I use the word “fun”…this does not and should not be torture.
Happy Chaining! Cheri

Now for something completely different...teaching a new course in a whole new way!

2010-11-21T06:26:00.001-08:00

Hi All
I am just finishing up the presentation for our new Food Chaining II course with Dr. Fishbein. Studies show that participants only remember 20% of what they hear, so this course will be taught in a whole new way. It will be extremely visual. That is right, lots of pictures, videos and you will be participating with us, analyzing cases, filling out worksheets and in other words, passive learning will go out the door. There will be a food lab. I am VERY EXCITED and more than a little nervous about doing things a new way but I think this is going to be one of the strongest, most dynamic courses we have ever put on. You do not have to be a 'graduate' of a past chaining course either, we will hit treatment so hard, in so many ways you will not be confused if you are new and if you are a past participant, this one will give you a wide range of ways to use all 6 steps of a chaining program. Some brave souls will also be part of our food lab!
So put on your thinking caps and get ready for a fun, fast and functional two day lecture. Oh yeah, that GI we like so much will be there to talk to you about a whole range of GI disorders from simple ones to the very complex.

Want to come to beautiful San Antonio, enjoy the Christmas lights and get away from it all? Call CEPA university at 309-472-1292. Come to the Riverwalk and have some fun with Dr. Fishbein, Laura and I. Hope to see you there!!

Course Details: December 3 & 4, 2010
San Antonio, Texas at the Hyatt Regency Riverwalk at 123 Losoya Street right in the heart of San Antonio, Tx
Parking is $15 a day (reduced from $23 but there are other cheaper parking areas close by)and guest room rate for course participants in $109. Check with hotel for cut off dates for registration at this rate. Identify yourself as a CEPA participant.
Dining and entertainment and we are just across the street from the Alamo.

Go to www.cepauniversity.com for more information!

Food Chaining II Course-Questions

2010-11-12T01:55:00.000-08:00

Food Chaining II: The Digestive Tract Disorders

Q. Cheri and Laura, can you give us more information about your new feeding course?

A. Hi Friends! If you want to know more about how to help children with feeding aversion, nutrition problems and digestive tract disorders, then this is the course for you. We are debuting this course in beautiful San Antonio right on The Riverwalk. (Can’t wait to see it decorated for Christmas!) Mark Fishbein, MD, pediatric gastroenterologist from Children’s Memorial Hospital in Chicago, Illinois will join us. We have greatly expanded Dr. Fishbein’s role in teaching this course. This course is therapy-packed and you asked for it, we are going to teach and show you how to use Food Chaining through cases, cases and more cases. We will work with the audience as a group to demonstrate Food Chaining in new fun ways. Get ready to have some fun with food!

This course is a follow-up to the introductory Food Chaining course, however, it is open to everyone. We get so many questions about infants who do not tolerate formula, treating children with food allergies and understanding how a digestive tract disorder can derail your treatment program. So special focus will be spent on the impact of digestive tract disorders on the child and how to tailor your feeding therapy plan to meet those needs. Dr Fishbein will also have a question-answer session with the audience.

We will discuss how to help infants and children with:
• Prematurity, poor weight gain/growth and Failure to Thrive
• Dysphagia and tube feeding regimens
• NEC/Short gut
• Food allergies, FPIES
• Malabsorption
• Mitochondrial disorders
• Esophagitis
• Vomiting, Cyclic vomiting syndrome, Behavioral vomiting
• Rumination
• Motility disorders, bowel problems, abdominal pain
• Constipation and diarrhea
• Reflux, medications, Nissen fundoplication (when is this procedure needed?)
• Retching
• Eosinophilic Esophagitis.
• Tube feeding will also be discussed
• Aspiration and reactive airway disease
• Autism (The Great Debates: Gluten Casein, Chelation, Leaky Gut)

Therapy will hit the complex challenges of sensory processing disorder and what to do in each of your treatment sessions. How can you successfully introduce new foods? How do you get started and know when to move forward? What do you offer, when and how? How do you adjust your approach when it is not working?

Food Chaining will be demonstrated in new, fun ways with a food lab. Therapy plans will focus on establishing trust first, educating the family and implementing effective, enjoyable Food Chaining programs at home, school or daycare. This course will be very interactive with the audience and we will help participants work with us through evaluation, development of treatment plans and making the right referrals for infants and children. Hope to see you there!!

Thanks again!
Cheri and Laura

Here it comes...The Food Chaining II course!!

2010-10-24T07:11:00.000-07:00

Well, I am in the middle of writing two new courses. Laura and I will be joined by an old friend for this course in San Antonio on the Riverwalk December 3 and 4, 2010. Mark Fishbein, MD, pediatric gastroenterologist from Children's Memorial Hospital in Chicago, IL will present with us. This is the debut of Food Chaining II courses. This one addresses the Digestive Tract Disorders. This course will explore treatment using a Food Chaining program for children with all types of digestive tract disorders. Food Chaining will be demonstrated through cases, but come ready to work, this will not be a passive learning course. (You may attend this one even if you have not attended a chaining course before, but the approach will not be taught the same detailed way, it will be demonstrated through the case studies).

In Spring of 2011, we will debut the other half of this lecture addressing the upper airway, dysphagia, treatment of infants and children with swallowing disorders with Sandra Ettema, MD, otolaryngologist from the SIU School of Medicine in Springfield, IL. Dr. Ettema is also a doctoral speech pathologist.

Much to do!!!

Bronchiectasis and Aspiration

2010-10-24T06:59:00.000-07:00

http://www.nhlbi.nih.gov/health/dci/Diseases/brn/brn_whatis.html
This is information from the National Heart Lung and Blood Institute. I just returned from the pediatric Feeding course in Cincinnati. The pulmonologist, Dr. Boesch, talked about aspiration. His lecture was amazing and he takes aspiration of food as seriously as we therapists do. We talked about abducting him and bringing him to our team in Springfield, but he was young and wiry and got away. :) Aspiration can lead to bronchiectasis. A chest x-ray will not tell you if a child is having damage from aspiration. Chest CT is how you evaluate for damage from aspiration. Here is some very basic beginning information for you on this subject. I have also posted information/links from other sources on my Facebook Food Chaining page.

"Bronchiectasis (brong-ke-EK-ta-sis) is a condition in which damage to the airways causes them to widen and become flabby and scarred. The airways are tubes that carry air in and out of your lungs.Bronchiectasis usually is the result of an infection or other condition that injures the walls of your airways or prevents the airways from clearing mucus. Mucus is a slimy substance that the airways produce to help remove inhaled dust, bacteria, and other small particles.

In bronchiectasis, your airways slowly lose their ability to clear out mucus. When mucus can't be cleared, it builds up and creates an environment in which bacteria can grow. This leads to repeated, serious lung infections.Each infection causes more damage to your airways. Over time, the airways lose their ability to move air in and out. This can prevent enough oxygen from reaching your vital organs.

Bronchiectasis can lead to serious health problems, such as respiratory failure, atelectasis (at-eh-LEK-tah-sis), and heart failure.
Bronchiectasis can affect just one section of one of your lungs or many sections of both lungs.The initial lung damage that leads to bronchiectasis often begins in childhood. However, symptoms may not appear until months or even years after you start having repeated lung infections.In the United States, common childhood infections, such as whooping cough and measles, used to cause many cases of bronchiectasis. However, these causes are now less common due to the use of vaccines and antibiotics.

Now, in the United States, bronchiectasis usually is due to an underlying medical condition that injures the airway walls or prevents the airways from clearing mucus. Examples of such conditions include cystic fibrosis and primary ciliary dyskinesia (SIL-e-ar-e dis-ki-NE-ze-ah).

Bronchiectasis that occurs in only one part of the lung may be due to a blockage rather than an underlying condition.Bronchiectasis can be congenital or acquired. Congenital bronchiectasis usually affects infants and children. It's the result of a problem with how the lungs form in a fetus.Acquired bronchiectasis occurs as a result of another medical condition. It can affect adults and older children. This type of bronchiectasis is more common than the congenital type.

Outlook

Bronchiectasis can't be cured. However, with proper care, most people who have it can enjoy a good quality of life. Early diagnosis and treatment of bronchiectasis are important. The sooner your doctor can start treating your bronchiectasis and any underlying conditions, the better the chances of preventing further damage to your lungs."

Revised May 2009

Visit us at Facebook Food Chaining page too...New Product Ideas

2010-10-24T06:29:00.000-07:00

Hi Bloggers. I have some new products I really like and wanted to share. First of the all, the Beabacook Baby Food Steamer is a great product to make your own baby food (you cook and puree in the same product) or to just steam vegetables, meat, etc. I want one for our clinic to cook food for feeding sessions. Beabacook website also has some great spoons and ways to transport food (so parents can take their baby or older child's food to restaurants, school, etc). http://www.williams-sonoma.com/products/beaba-babycook-baby-food-maker/. It is pricey, so check around, Ebay, etc.
I also love the Magic Bullet at http://www.buythebullet.com/ (or Ebay, etc) and the convenience of this product is off the charts. Puree food for infants or make chicken salad for your family. It also chops nuts to a fine coffee ground consistency and you can stir them in to other foods. A good coffee bean grinder can also be helpful to a therapist for this reason.
I also love all things Special Tomato. http://www.specialtomato.com/index.html Special Tomato has chairs, seating options and products that are so wonderful. Positioning is a key part of successful eating. Marsha Dunn Klein says the shoulders are the floor the head rests upon and the hips/pelvis are the floor the trunk sits on, stability is a key part of eating well and chewing. Kids can't be dangling in space, so check out Special Tomato.
One of my favorite finds of the year (Thanks to one of my dearest patients) is the Beyond Play Little Spill cup. I love this cup and it creates a safe way to introduce open cup drinking. It can also be used up to adulthood and great for those who have occasional tremors of the hand, etc which might lead to spills. I usually start out with slightly thicker liquids for kids. Great product. http://www.beyondplay.com/CATALOG/ORA1.HTM

A Tale of a Boy and a Sandwich by Alicia Hart

2010-08-30T04:29:00.000-07:00

Alicia sent this to me via Facebook. What a gift this story was to motivate me to keep fighting the good fight and trying to help children learn to eat. I must tell you that this is an amazing story that did NOT include force, z-vibes, pointless oral motor for no reason or direction, timers or the words "just take a bite."

What this WAS about was consistency, resolve, timing, offering food in a natural low pressure way, taking time to teach Ewan about what was on the plate, where it came from, how it grows and to allow the sensory system to adjust to new foods. It was about learning and life and food. What foods do you eat at a baseball game? Alicia and Stacy found ways to make this a whole learning-language activity and they did the same things over and over again. Food Ewan liked was also allowed to be part of his day to day and not taken away. He enjoyed Ewan food while learning about new food during treatment. Who wants to come to the table if it is torture? So we recommended that they change things slowly and let Ewan set the pace of what food, when based on his reactions to what we offered. The wonderful amazing Stacy Vitale worked with him every week in Mattoon, Illinois at Sarah Bush Lincoln Hospital. We were the feeding team and yes, I did see that he had EE, but the true heroes of this story are Alicia, Anthony, Stacy and most especially, our dear Ewan.

A Tale of a Boy and a Sandwich
Right now I’m crying over a sandwich. I know, this sounds utterly ridiculous and most of you are wondering if “Miss Lisha has left the building,” but I can assure you there is a sound and rational reason for my tears of joy.

Yes, joy.

It’s not that I have discovered the best kept sandwich secret in the greater Charleston / Mattoon region. It’s not that I have discovered some secret ingredient to the Crabby Patty recipe. It’s because my son asked for a sandwich and ate it. It’s that simple. He asked, I made it, and he ate it—with excitement and eagerness.

Now before too many of you think Miss Lisha is easily entertained let me tell you a story about a boy….

Over 8 years ago, there was a little boy born in a small hospital amidst laughter and joyful anticipation. Within seconds of this child’s birth, his parents knew without a doubt that he was different. He wasn’t your average everyday newborn baby. They didn’t know what it was about him that was different—they simply knew he was.

Over the following weeks and months the things that made him special became more and more obvious. Things like not sleeping, staring at the blinds and shadows on the wall, and always fighting against human contact. There were also things like nursing round the clock every 45 minutes and then throwing it all up—a constant vicious cycle of need and refuse. No one really knew what was wrong—it was as if everyone was dancing around the edge of some greater mystery.

And so they waited for the kinks to work themselves out and simply hoped and prayed that it would. The boy grew and grew but he didn’t talk and he didn’t eat much—people and food and places and things were sometimes just plain frightening to him. Eventually his parents found a word for the why—autism—and from that day forward life became a series of therapy visits and doctor visits and tests, tests, tests.

The boy learned to communicate, he learned about himself, and he learned how to learn—but he still didn’t eat. Then one day his mother drew a line in the sand and said, “You’re going to eat this young man and I don’t care if you throw it up.” And throw it up he did. Finally, the boy and his parents ended up in a feeding clinic amidst a plethora of white coats, khaki pants, and big hair—all telling them the same thing—it’s not that he won’t, it’s that he can’t. It took many days and weeks and months before this mother and this father finally understood what all those fancy therapists were saying—it’s not that he won’t, it’s that he can’t.

And so this mother and this father learned how to help this boy and they worked day in and day out on making food an enjoyable part of life—three times a day, every single day, year after year. They erased the line in the sand and started from scratch. Learning to learn and teaching to teach they saw this boy willingly reach out for food. But still, he could only reach so far before he drew back again and it’s not that he wouldn’t, it’s that he couldn’t.

One day this mother ended up in a therapy clinic with a video camera in hand to show everyone else that again it wasn’t that he wouldn’t, it was that he couldn’t. And finally, finally, the Redhead with eyes that saw what everyone else missed whispered the name for all the tears and struggles—Eosinophilic Esophagitis. His parents had to take food away in order to give it back again—and for the first time in four years of his life, this boy could eat food without pain. Yet each bite came with fear and trepidation—each bite brought back the ‘what ifs’ and it took all his courage and strength to reach out and just take a bite. Despite his fear, despite his pain, despite everything—he continued to reach and to trust and to learn.

And despite all of that, today MY son asked me for a salami, lettuce, cheese and tomato wrap. I made it and he ate it. He gleefully ate every last bite of it. He ate it, and I cried. And when Ewan asked me, “Mom, why do you cry?” I replied simply, “I cry because I am so proud of you and I cry because I’m happy and I cry because it’s been a long, long road to get here.” To which the literal young man said, “Mom, we went from the kitchen to the living room—it wasn’t THAT far.”

Fall-Winter Courses 2010

2010-07-30T06:41:00.000-07:00

Hi All
Looking for a fun get away and great course on treatment of pediatric feeding disorders? This fall-winter, Laura and I are going to San Diego, San Francisco, San Antonio and St Louis. We will be joined by Marsha Dunn Klein for our feeding aversion course combining treatment using Food Chaining and Get Permission approach. We will then do our first follow up course to the Food Chaining course. This one focuses on treatment of children with feeding aversion and GI disorders. We will be joined by pediatric gastroenterologist, Mark Fishbein, MD. Hope to see you there!

To register contact www.cepauniversity.com
Course: Feeding Therapy for Infants & Children: What To Do & How, When & Why To Do It" (Two dates for this course)
Faculty: Cheri Fraker, MS, CCC, CLP-L, CLC and Laura Walbert, MS, CCC, SLP-L, CLC
September 24 & 25, 2010 - San Francisco, CA
November 5 & 6, 2010 - San Diego, CA

"Treatment of Severe Feeding Aversion: Dealing with "No!" The Best of Both Worlds-Food Chaining & The Get Permission Approach"
Faculty: Cheri Fraker, MS, CCC/SLP-L, CLC, Laura Walbert, MS, CCC/SLP-L, CLC and Special Guest Marsha Dunn Klein, MEd, OTR/L
October 22 & 23, 2010 - St. Louis, Missouri

Food Chaining II: Feeding Aversion and Dealing with Digestive Tract Disorders
Faculty: Mark Fishbein, MD (Pediatric Gastroenterologist), Cheri Fraker, MS, CCC/SLP-L and Laura Walbert, MS, CCC/SLP-L December 3 & 4, 2010 - San Antonio, Texas

Picky Eating in Adults/Teens

2010-07-23T06:05:00.000-07:00

The plight of picky eating adults
Researchers are finally exploring distress at the dinner table
by Julia Belluz

Rhonda West’s picky eating began during breastfeeding. “I couldn’t have my mother’s milk, so they put me on cow’s milk, but I was allergic, so then they put me on soy,” she says. “When it came time for solid foods, I didn’t want any part of that.” In fact, most foods made her want to gag.

Now, 41 years later, West is a picky eating adult. She survives on toast, waffles, pancakes, simply cooked meats, and French fries. (Oddly, almost all adult “selective eaters” include French fries in their limited food repertoire). “I don’t like foods that are mixed-up together,” says West, who lives in the Washington, D.C.-area and is currently looking for work. No vegetables, few fruits, and absolutely nothing that’s too soft or squishy. “I equate eating pasta with eating a plate of worms.”

For picky eaters, most meals are unbearable, and nearly all foods make them nauseous. Failed relationships, lost work opportunities, and anxiety caused by the very thing others derive great pleasure from.

While childhood picky eating is commonly recognized, little has been done to understand people like West—until now. In July, Duke University and the University of Pittsburgh launched the first national public registry of picky eaters, known as the Finicky Eating in Adults study (eatingdisorders.mc.duke.edu). People can log in and complete a survey about their relationship with food and eating habits. It’s still early stages, but this study is designed to help researchers better understand “avoidant, restrictive food intake disorder”—which is currently under consideration as an officially recognized eating disorder, like bulimia or anorexia.

Marsha D. Marcus, chief of the Behavioral Medicine Program at the University of Pittsburgh Medical Center and one of the lead investigators on the study says, picky eaters tend to fall into one of three groups: those with taste issues, those who have never had a real interest in food, and a third group who have had traumatic or aversive experiences with food.

Marcus says it’s too early to tell how many suffer from this disorder, but she’s heard of cases where one’s eating restrictions are so acute they survive by a feeding tube. Others avoid vacations, business meetings, dinner parties, and weddings—any event that brings them into contact with unknown food. Indeed, one American sufferer said that Thanksgiving is known among picky eaters as “Black Thursday”.

However, Marcus is careful to distinguish adult picky eaters from people with the food quirks most everybody lives with. “We’re not trying to pathologize people’s preferences,” she says. “We’re looking for people whose food restrictions are a source of impairment or distress or have led to a health problem.”

One interesting theory the researchers will explore is whether picky eating is genetic. “There might be a group of people who have different ways of tasting, so the food that tastes good to you or me tastes awful to them,” says Marcus.

According to picky eater West, this is a distinct possibility. “Picky eating is nature not nurture,” West says. “People are light, sound, smell, touch, skin sensitive—why not taste?” In fact, West insists that if she could change her palate, she would. “It’s high anxiety when you’re going to meet new people, especially for a job, and you have to explain why you’re not eating anything on the menu,” she says. When she summons the courage to go to a restaurant, she usually requests plain grilled chicken.

T.J. Haselden, a computer salesman living in Montreal, refers to himself as “the pickiest eater in Canada.” Of the disorder, the part-time comedian says, “I have learned to laugh about it, but the truth is that I’m really getting fed-up.”

Haselden eats only six foods: hot dogs, hamburgers, chicken, turkey, bacon, and French fries. He gags at the thought of tasting anything new, and also claims that this disorder began in childhood. “Everybody tries to say it’s my mom’s fault for not treating it the right way. I always say the only thing I can blame my mom for is that she was too accommodating.”

When he was a teenager living with roommates, Haselden would stay away from the kitchen. When friends ordered pizza, he’d tell them he was allergic to tomatoes to avoid confrontation. Now 30, he lives with his wife, Chantal, and has realized that his picky eating infringes on her life, too. “She can’t explore her taste buds the way she would want to.” For example, when she eats something as simple as pasta—a dish he abhors—the two have to sit at opposite ends of the dinner table. “I can smell the pasta so much I feel like I could taste it and it makes me want to gag.”

Haselden is undertaking a film project in the hopes that he can broaden his palate. He’ll document a 30-day journey of new tastes, attempting to try every food he’s been afraid of. “I want to use the power of the camera to overcome my fear and make people laugh.”

But can he and other picky eaters change their ways? Nancy Zucker, the director of the Duke Center for Eating Disorders who is leading the study with Marcus, says she hopes so. Her goal is to come up with effective coping strategies and treatment, and to distinguish selective eating from other eating disorders.

“People have a tough time having empathy for those who taste things differently,” she observes. “Even more profoundly, imagine you had an experience and you tasted something and thought, ‘this tastes like cardboard’ and people were mad at you for that, saying that you’re not experiencing what you’re experiencing. That’s what these people go through everyday. It’s time we explore and recognize what’s going on here.”

Question of the Week...Treatment for Older Children

2010-06-03T04:56:00.001-07:00

QUESTION: Hi Cheri, I recently saw a 14 year old boy for a feeding evaluation and I was wondering if you could provide suggestions regarding feeding therapy. Here is some background.

D did not have any difficulty breast/bottle feeding, but he did not take to finger foods as a baby. He was diagnosed with sensory integration disorder at age 2. No one else in the family has been diagnosed with sensory integration disorder.

He saw a feeding therapist at age 3 for a few months before he started resisting feeding therapy. D was seen at a _____Hospital for a day treatment admission of 2.5 weeks at age 5. During his time there, he was transitioned from baby food to soft solid foods. He would spit out hard solids. He was discharged after 2.5 weeks and his parents were told to work on the feeding skills at home. He saw an occupational therapist from age 4 to approximately age 6-9 at school with a sensory gym. He discontinued occupational therapy as the occupational therapist was let go from the school.

His current (very limited) diet includes the following purees and solids: mashed potatoes, bologna, cinnamon apple sauce, peas, spaghetti, ham, bologna sandwich, chicken nuggets, french fries and liquids: apple juice, soda, water, whole milk. He does not like eating chunky, hard foods (pizza, meat, chicken, dry crusty bread, chicken fingers, cookies). There are some foods such as cherry Italian ice that he used to eat, but no longer eats. D does not have any difficulty gaining weight. He's never been diagnosed with reflux. His mother was doubtful that D would even try a nutritional supplement such as Ensure.

D's mother reported that all of D's sensory integration disorder tendencies have resolved/improved with the exception of feeding. During the evaluation, D began to cry in the room because this was the first time that he was told about his history of sensory integration disorder. I tried to explain that his condition is not a disease and that he just has difficulty processing sensations. He was also upset because he felt that this was a problem that should have been addressed earlier by his parents and he felt like they did not try hard and early enough to help him. D will begin high school this fall and his mother would like to see if he can increase the number of foods he can eat. D does meet with a therapist weekly, but it seems that the topics of discussion are more about fighting with his sister.

Initially he was reluctant to try any foods during the evaluation. He only eats cinnamon apple sauce and he finally agreed to try a bite of non-cinnamon apple sauce. He ate that then refused to take a bite of a graham cracker. He had difficulty labeling tastes (salty, sour).

D's mother did not recall if her son has had a modified barium swallow study previously. I didn't think that an MBS was warranted because there were no signs and symptoms of penetration/aspiration/difficulty swallowing, but I can certainly recommend the test if you think it is necessary.

It took a lot of encouragement to get D to agree to start feeding therapy. I suggested that perhaps we could start with foods he once ate but no longer eats. At the evaluation, he agreed to try feeding therapy.

Yesterday I had my first feeding therapy session with him. My expectations were not high for the session, but I think it went even worse than expected. I gave D a choice whether he wanted his mother in the room or not. She came with us into my room since he seemed to grunt that he wanted her there. In the room, D was very quiet and at times angry because he didn't want to be there. He did not respond to most questions and his responses were typically limited to yes/no. He was very disinterested and pretended to sleep. After about 40 minutes of me talking and very little interaction from D, I stopped the session. I feel like there are a lot of the control issues that you mentionedin the Food Chaining book. I scheduled another session with D in a few weeks as I will be away and his baseball practice couldn't accomodate a closer date. At the end of the session, mom told me that D expressed to his therapist the day before that he was angry that his parents were forcing to attend therapy. Just prior to the session, he told his mom that she was wasting her money on feeding therapy.

Do you think that I should continue these feeding therapy attempts or should I discontinue because he is 14 and capable of making his own decisions? Do you have any suggestions for approaches you would take? Should I ask mom to stay out of the room?
Thank you so much for being such great resources. I look forward to hearing your insight so that I can help D improve his feeding issues.

ANSWER: He is so loaded with emotions and a has a lack of information about this problem, that he isn’t ready to work on the food right away. The Picky Eating Adults website might help and it might also help for him to learn that it isn’t just his parents...physicians and professionals from all over miss this, don’t understand it and do the wrong thing over and over and over. Treatment has to address all sides of the disorder or the disorder will re-establish itself, like weeds, they just keep popping up and the complexity of the disorder grows. You can't just pull ONE weed.

He had years of OT so I don’t think anything was missed as far as effort to help him, it was just that no one knew how to treat feeding. The fact that he was on baby food until that age means a lot. It could be he lacked the motor plan to be able to advance his skills. He could have dysphagia and huge sensory challenges. This will require a complete feeding history and referral to RD to see where he is from a nutrition/growth standpoint. More on that later...

He feels different and the thing he wants more than anything in the world is to fit in and NOT be different. His mom should not be there yet, I would see him and then have her join you for the last 5 minutes or so to go over what happened. He is not going to initiate a lot. Establish rapport, see what he wants out of this. There are two kinds of kids, kids who feel they can't overcome it so are afraid to try and kids who are scared to death of us and what we will make them do. Kids that do not want to grow or eat, may also have components of an eating disorder. The complexity of these issues can be daunting, therefore, team care is needed. The counseling/therapy needs to go way beyond issues with his sister.

Kids this age need a plan that fits their lives. He needs a plan that thinks ahead to being able to eat with friends, school trips, on a date, in a dorm. He has a decent variety of foods in his diet. For example, if he could learn to eat a ham sandwich at Arby’s and fries he would have a place to go eat with friends or Subway ham sandwich, if you chained fries to McDonald’s hash browns or Hardees hash browns, he has another place he can go socially. Pasta-can be expanded so Olive Garden and other restaurants are within his reach. He has a small food repertoire and it doesn’t translate well to real life, but at least all the foods aren’t the same texture. I crumb/crush solid foods like crackers, chips, etc and let the kids taste the crumbs and see if they like the flavor of any of these foods first. Then I work up to helping them eat larger crumbs and build the skills. Some kids tell me that chips feel like eating pieces of glass. So does it feel uncomfortable or does he not know how to eat it?

Are there foods he wants to learn to eat? What does he want to do in life? Does he have the ability to tell you if he wants to go to college, etc? Tailor the plan to HIS life.

We need a Sibyl here to address nutrition, but Carnation Instant Breakfast added to milk could take him a long, long way toward the micronutrients and calories he needs. He is standing on the edge of a huge growth spurt and this is the time he needs more. You can start by adding a very small amount of the (usually vanilla) powder to milk and letting him taste it. Give him a 1/4 tsp up to T spoon and let him pick which one and mix it into a glass of milk. Have a glass of regular milk and CIB milk. Let him dip a straw in it at first and taste and compare. If he can learn to use CIB that is a "meal". Adult supplements are not great in taste and texture for some of our sensory kids. So, this may be a much better choice. It can also be mixed in to milkshakes for extra calories. Even if he doesn’t make huge changes, that will be something normal looking, tasting that he can work toward.

Now, I have also had kids take on chains to work toward lattes and coffee drinks, big time calories and makes them feel very normal as they grow up at college or later in HS. They can also get a drink like this in many places if they can’t stand the food. It makes an adult feel normal to say, “Oh I am just going to have a coffee, I am not that hungry.” Strategies, here, these are strategies that can work and help.

This is painful, it hurts, it never goes away. Meals are endured. Does he enjoy anything at the table? Could he learn to drink V-8 Splash or fruit smoothies, fruit flavored shakes, etc? He isn’t going to like treatment unless it makes sense to him. Fruit breads, muffins, softer breads....also could be good for him.
Success can be one session at a time, one meal where he feels safe and in control, one thing he tries and it isn't that bad...it does not matter WHAT food it is right now, so don't target brussel sprouts, there are no good or bad foods...just get him to where he can eat something. We can expand the diet in time to more nutritious foods.

Fiberoptic Endoscopic Evaluation of Swallowing-Pediatrics

2010-05-16T09:53:00.000-07:00

Pediatric FEESST: Fiberoptic endoscopic evaluation of swallowing with sensory testing
Journal Current Gastroenterology Reports
Publisher Current Medicine Group LLC
ISSN 1522-8037 (Print) 1534-312X (Online)
Issue Volume 7, Number 3 / May, 2005
DOI 10.1007/s11894-005-0041-x
Pages 240-243

J. Paul Willging, MD and Dana M. Thompson

Division of Pediatric Otolaryngology, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue, 45229 Cincinnati, OH, USA

Abstract Fiberoptic endoscopic evaluation of swallowing (FEES) was developed as an adjunct to the videofluoroscopic swallowing study and clinical examination of swallowing function in the adult. The sensory testing aspect of fiberoptic endoscopic evaluation of swallowing with sensory testing (FEESST) utilizes an air pulse stimulus of mechanoreceptors within the larynx. The study can be performed safely in children as young as premature infants and in adults. Adequate levels of cooperation can be obtained in nearly all children requiring FEESST. No cases of laryngospasm or respiratory compromise have been encountered. FEESST was initially applied to patients with dysphagia. It is now used in the study of the effects of gastroesophageal reflux on the larynx and swallowing function. The extent of pooled secretions in the hypopharynx can be used as a surrogate measure of laryngopharyngeal sensory testing. When patients managed by FEESST were compared with patients managed by video-fluoroscopic swallow studies, there were no statistical differences in the rates of pneumonia or pneumonia-free interval. A learning curve is present for the operator, but with basic endoscopic skills, FEESST is a skill within the scope of practice of most pediatric endoscopists.

Simply Thick: New Formula Does NOT contain sodium benzoate

2010-04-05T08:15:00.000-07:00

Update! I was contacted by John Holahan from Simply Thick with this update. The new formulation is free of the preservative Sodium Benzoate. This is great news for our families. I do still stress, that whenever this product is used in infants/children with dysphagia, that you whisk it and do not shake to mix.

John's Email summary...
"We have dropped sodium benzoate from our formulation. We were looking at a number of potential changes to offset some minor flavoring reactions that occur over time and we found good results when we dropped the sodium benzoate. Considering concerns like those below, we decided to go ahead and drop it from the formulation.

We started shipping the new formulation last month, so it has just about worked its way through the channels and I think most vendors are now supplying the new formulation. Over the next few weeks, we will start updating our data on-line, now that we have just about phased out the benzoate."

Laura's Peanut Butter and Jelly Sandwich: A Day in Cheri's Life with Sensory Processing Disorder

2010-04-01T03:49:00.000-07:00

I am trying to get Laura to start posting on here too and decided to share what happened day before yesterday at lunch. This may prompt her to comment! Ha! Anyway, it was a beautiful day in Springfield, warm, sunny and perfect. So at work, we went outside to eat. As those who follow my writings know, I have sensory processing disorder and that is an important point to remember when reading what happened at lunch. Dining outside is always a challenge and this day was no different.

We have three picnic tables at work. One is beside our building and backs up to the small parking lot and a brick wall. We have a beautiful place to work though and it is surrounded by trees. With this table, it is fully in the sun, but it is hard, metal and you hear a lot of noise there sometimes. I can smell the metallic scent of the table. I of course, sit with my back to the sun to shut out some of the light, Laura sits full sun side, face up for the maximum light. Now, delivery trucks pull up, squeal and there is the sound of opening of the doors, the noise of the air conditioner...everyone else can tune it out, but I cannot. I also have my back to it. When a big delivery truck pulled up, the noise really bothered me. My shoulders were up to my ears. Also, the table is very tall and my feet don't touch the ground well. I am very fatigued since I have had pneumonia and I had to constantly push my body back upright. I just don't like how the metal feels under me. As we sat there, more and more people came out and there was more noise, more conversation to process and participate in. I was at the end of the table (on purpose) I am always on the end for a hasty retreat. So that icky table is where we were for lunch, it should be noted I only ate half of my meal. Maybe I should sit there MORE often.

Now there are two other picnic tables that back up to the trees around our facility. But unfortunately, they were occupied. They are still in that same location, but up on a grassy, hilly area, by the trees, not as close to the parking lot, part sun, part shade, but to the side of your body not directly full on to your face. The tables are lower to the ground, heavy, smooth plastic picnic tables and I like them much, much better than the metal table.

Can you start to see and understand all the sensory issues that were impacting me and how they impacted my ability to eat?

Now on to the sandwich story.

I had my meal, one napkin under the food, one beside me to create a barrier between myself and that table. But I felt it every time my hands touched that rough, odd, surface. Laura got her food out and started to make a peanut butter and jelly sandwich. We both love PBJ but make it very, very differently. I have never watched her make one before. Laura just put her bread out and put A LOT of globs of jelly everywhere, even over the sides of the sandwich. She put her knife with peanut butter residue on it, in the jelly jar. She makes more of a peanut butter and JELLY sandwich. Mine is more peanut butter and more even between the two, with way, way less jelly. No globs, I smooth them all out. Her bread was partially touching the table. Heaven forbid! Mine would have been evened out with nothing over to the sides of the sandwich. If she made one for me like that, do you think I would have eaten Laura's version of the PBJ? If offered nicely? No thank you. If offered with pressure or force? Nope. There would have been a knock down drag out in the parking lot at Koke Mill. Do I like PBJ? Yep. But Table effect + jelly globs+ noise level+sensory overload=Game over. So imagine if I was a child with feeding issues...I would not have eaten that sandwich. The jelly would have also made my hands sticky and the globs would have rolled around on my tongue. Not to mention that I would still be dealing with all the other sensory things to do with the table and environment.

I commented to her on the amount of jelly (when you work together as much as we do, that filter that tells you to speak or be silent gets a little thin). She promptly told me to "shut it" and went on to joke about the Jelly Effect and her current weight loss program!

So the moral of this little tale being this... Kids with mild feeding issues, more severe feeding aversion, sensory issues, OCD, autism, anxiety etc struggle to handle the sensations of food + the sensations in the world. There are rules for what makes a food acceptable and what doesn't. If you think about it you have rules for your food too. Our job is to learn the child's rules and respect them, but find a way for that child to function in the world with the least amount of distress. Yesterday we had lunch at my favorite table. I did much, much better. Also I was in comfortable clothes during the PBJ incident, but if I was not comfortable, my tolerance for the situation would have been much lower. Think about where kids eat, cafeterias that are loud, messy and attack the nervous system with sensation. I have so many parents telling me about times when their child ate well and surprised them completely and times when their child rejected a food they always liked and they don't understand what happened. My job is to piece it all together. If what happened with us day before yesterday happened to a child, that child might think the next time he sees a sandwich made-he will likely think of that memory of when it seemed repulsive. He might flash back to that image for a very long time to come too or if dealing with autism, OCD-always flash back to that image. We then have to help that child have other images of that food that are acceptable. I thought of Laura's sandwich this morning as I made my PBJ sandwich today, that is what prompted me to write this post.

Oh how very different Laura peanut butter sandwiches and Cheri peanut butter sandwiches look!

Think about these issues as you study how the children you work with like to eat. It is about much, much more than the food. Make a glob-free PBJ! There are rules, people, RULES!

Happy Chaining!!

Dr Fishbein will join us for a one day course in Indiana - May 7th 2010

2010-03-26T07:54:00.001-07:00

Food Chaining: It Takes a Team...The Digestive Tract Disorders
Type: Education - Workshop
Date: Friday, May 7, 2010
Time: 8:00am - 4:30pm
Location: The Hampton Inn (Munster, IN)

Presented by:
Cheri Fraker, CCC/SLP, CLC
Laura Walbert, CCC/SLP, CLC
Mark Fishbein, MD

Contact Hours: 7

Speaker Biographies:
Cheri Fraker, CCC/SLP, CLC and Laura Walbert, CCC/SLP, CLC are ASHA certified pediatric speech pathologist and certified lactation consultants. They provides therapy services at The Center for Neuromuscular Services and they are the clinic feeding specialists at The Center for Selective Eating and Pediatric Feeding Disorders, a multi-disciplinary feeding team clinic at Koke Mill Medical Center.

Mark Fishbein, MD, is a pediatric gastroenterologist at Children’s Memorial Hospital in Chicago, Illinois. He is an Associate professor of Pediatrics, Northwestern University's Feinberg School of Medicine. Dr. Fishbein co-authored the Food Chaining: The Sensible Six Step Solution for Picky and Problem Eaters. He has written articles published in several medical and nutrition journals including Articles about Food Chaining have appeared in The Wall Street Journal,. He has completed research in the area of feeding most recently including: State Provided Programs: A Survey to Determine Whether They are Meeting the Needs of Infants and Children with Feeding Disorders and Training pediatric feeding therapists: How well are we doing? Presented at NASPGHAN meeting, November 2009.

Seminar Description:
This therapy packed one-day presentation will be presented by the authors of the book “Food Chaining: The Proven Six Step Solution to Stop Picky Eating, Solve Feeding Problems and Expand Your Child’s Diet.” This course will focus on multidisciplinary therapy strategies to develop Pre and Food Chaining Program for treatment of children with complex feeding difficulties. Special focus will be spent on the impact of digestive tract disorders on feeding.

Seminar Objectives:
As a result of this workshop, the participant will be able to:
Explain the complexity of pediatric feeding disorders and the need for multidisciplinary treatment programs.
Recognize factors in the medical history that impact feeding and develop a greater understanding of the digestive tract disorders.
Develop complex multidisciplinary treatment programs for children with prematurity, feeding aversion, behavioral and/or sensory-based feeding disorders.
Describe the treatment techniques of Fraker, Walbert and Cox’s Food Chaining© techniques: analysis of core diet, the techniques of flavor mapping and flavor masking, use of transitional flavors, and the rating scales for identifying food progression and monitoring progress

Agenda
7:30-8:00 Registration, Coffee and...
8:00-9:00 Prior to Food Chaining©: medical, nutritional, swallowing considerations
9:00-10:00 When Eating Hurts: GI Disorders, The Role of Reflux in Feeding Aversion, The Signs of a Food Allergy and Eosinophilic Disorders, Allergy or Aversion? Management of Food Allergies
10:00-10:30 The Dr. is In: Q and A with Dr. Mark Fishbein
10:30-10:45 Break
10:45-11:30 Six Steps of Food Chaining, Analysis of the Core Diet, Flavor Mapping, Individualized Eating Profile, Use of the Rating Scales
11:30-12:15 Treatment of Sensory and Behavioral Based Feeding Disorders and Food Chaining Programs
12:15-1:30 Lunch
1:30-3:00 Using Food Chaining in Treatment: Mealtime preparation, Initial Food Chains, Tips for Introducing Food, Anchor Foods, Social Stories, Teaching about Food
3:00-3:15 Break
3:15-4:30D Developing Food Chaining Programs for Children Cerebral Palsy and Autism, A Discussion regarding GI Problems in Children with Autistic Spectrum Disorder

Registration Information:
To register for any of our seminars, please visit our website at www.weecaretherapy.com to pay by PayPal, or call us directly at (219) 322-1415.

10% discount - if registering by phone for more than one seminar at one time, or more than three individuals from the same agency are registering for the same seminar at the same time

20% discount - for active clients of Wee Care Therapy who register by phone

Families may request tuition reimbursement from the family involvement fund at (800)437-7924 or (812)855-9396.

Seminar Location:
Hampton Inn and Suites, 8936 Calumet Ave., Munster, In. 46321, (219) 836-5555

Visit our website at www.weecaretherapy.com for all seminars offered,
as well as for information on our free Heart-To-Heart Series for parents and caregivers.

Any Food Chaining Therapists in Dayton, OH area?

2010-03-26T05:50:00.000-07:00

If you live in Ohio and have attended a Food Chaining course, I may have a referral for you. Please let me know and I will put you in contact with the treating therapist in Spokane, WA.

Allergic Reaction to Inhalers and Steroids

2010-03-21T14:03:00.000-07:00

I had pneumonia the month of February. Unfortunately, another complication arose. I started having an allergic reaction to the inhalers (Albuterol) and later Xopenex. I decided to post some of the side effects. Keep these in mind for our patients who cannot always tell us how they feel.

My reaction to Albuterol resulted in tachycardia, dizziness, tightness in the chest, shortness of breath, insomnia, hoarseness, sore throat and headache. My reaction to Xopenex (thought to be better option and less chance of reaction) was much more severe. Tightness in the chest, tachycardia 138 resting pulse for days and days, pain, inflammation and angioedema of the pharynx and larynx, wheezing, tight chest and chest pain with very irregular heart rate. It took about a week and a half for symptoms to ease after stopping the medication. I did not eat well, couldn't breathe well enough and could not lie flat in bed. The steroids made me feel extremely weak, like I had been shocked. I had this feeling all the time, even when waking in the morning. I also had chills, shaking, increased appetite.

I. Albuterol: Reported side effects include: Dizziness; headache; nausea; nervousness; sinus inflammation; sore or dry throat; tremor; trouble sleeping; vomiting.

SEVERE side effects occur when using Albuterol:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); chest pain; ear pain; fast or irregular heartbeat; new or worsened trouble breathing; pounding in the chest; red, swollen, blistered, or peeling skin; severe headache or dizziness; unusual hoarseness; wheezing.

II. Xopenex: COMMON side effects persist or become bothersome when using Xopenex HFA Aerosol:Dizziness; dry mouth; nervousness; runny or stuffy nose; sore or dry throat; tremor.

Seek medical attention right away if any of these SEVERE side effects occur when using Xopenex HFA Aerosol: Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); chest pain; fast or irregular heartbeat; new or worsening wheezing, coughing, or trouble breathing; severe headache or dizziness; severe or persistent trouble sleeping; sudden shortness of breath; unusual hoarseness.

III. Flovent: (This is used in many kids to treat EE) Dry mouth; flu; headache; hoarseness; mouth or throat irritation; nasal discharge; runny nose; sinus swelling; sore throat; stuffy nose; upper respiratory tract infection.

Seek medical attention right away if any of these SEVERE side effects occur when using Flovent HFA Aerosol Inhaler:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); fainting; lack of energy; nausea; severe dizziness; slowed growth in children; sudden weight loss; tingling of the arms and legs; tiredness; vision changes; vomiting; weakness; wheezing; white patches or sores in the mouth.

IV. Prednisone:Difficulty sleeping; feeling of a whirling motion; increased appetite; increased sweating; indigestion; mood changes; nervousness.

Seek medical attention right away if any of these SEVERE side effects occur when using Prednisone:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); appetite loss; black, tarry stools; changes in menstrual periods; convulsions; depression; diarrhea; dizziness; exaggerated sense of well-being; fever; general body discomfort; headache; increased pressure in the eye; joint or muscle pain; mood swings; muscle weakness; personality changes; prolonged sore throat, cold, or fever; puffing of the face; severe nausea or vomiting; swelling of feet or legs; unusual weight gain; vomiting material that looks like coffee grounds; weakness; weight loss.

April 30 and May 1st-Minnesota

2010-03-20T17:42:00.000-07:00

Feeding Therapy for Infants & Children: *What to Do & How, When & Why To Do It! This course will be presented on April 30 & May 1, 2010 in Bloomington, Minnesota. To register go to www.cepauniversity.com. Hope to see you there!

2010 Feeding Courses

2010-03-18T09:51:00.000-07:00

Q. Cheri and Laura, you are presenting a variety of different courses this year some participants may be confused about the differences between the courses. Can you describe your different courses?
A. We are very excited about the updated and new courses for 2010. The first is our intermediate duet course, Evaluation and Treatment of Pediatric Feeding Disorders: From NICU to Childhood. We present this course to teach participants about in-depth evaluation and treatment of infants and children. This course emphasizes development of understanding of the complexity of the medical, nutritional, behavioral, cognitive, sensory and oral motor/swallowing issues that result in feeding problems. Evaluation and treatment are covered in depth for premature infants, newborns, children and adolescents. Swallowing is covered in depth with information on videoropharyngeal swallow studies, FEES, cranial nerve evaluation and multiple etiologies of swallowing problems, including those related to Chiari malformations. The course also briefly gives an overview of our Pre and Food Chaining programs during the treatment lectures. We also provide an overview during our Special Topics discussion of the special needs for children with a diagnosis of cerebral palsy, cleft palate, Down syndrome, Autism and Vision and Hearing Impaired. Videotaped cases are used for instruction. We have done this course many times and to keep it fresh and current, we are continually updating the information and case studies. This course is geared toward the needs of the speech pathologist and occupational therapist.

Our second duet course is Treatment of Pediatric Feeding Disorders: What to Do and How, When and Why To Do It? This course concentrates on problem solving and clinical judgment as you evaluate infants and children and focuses on how to develop comprehensive, multidisciplinary feeding programs. This is an exciting course that challenges participants to assess the child in a holistic manner and helps the therapist prioritize the child’s needs during treatment. This course focuses heavily on understanding the medical challenges that impact feeding and swallowing and making the BEST decisions for treatment at the right time. Participants are given options for treatment and must work during the course to select the right intervention strategy during case studies. Like the NICU to Childhood course, this course addresses many types of feeding and swallowing disorders and we use many videotaped case studies for optimal learning.

Q. What is covered in your advanced level Food Chaining Course?
A. This course is our trio; Laura and I are joined by Sibyl Cox, RD, LD, CLC, pediatric dietitian from the SIU School of Medicine. Sibyl is also a co-author of our Food Chaining Book. This course covers food chaining and pre-chaining programs in depth. Sibyl gives detailed information about nutrition from a dietitian’s perspective. Videotaped cases are used for instruction. The participants are taught how to develop a complex, multidisciplinary feeding program that addresses medical, nutritional issues, oral motor, and swallowing, sensory, behavioral and cognitive needs of the patient. The audience members are assisted in development of Food Chaining programs for their own patients. Pre-Chaining is addressed as a precautionary care approach to try to prevent or lessen the severity of feeding disorders in high risk or medically fragile patients. We expect, but it is not a requirement, that participants be quite well versed in pediatric feeding therapy to get the most out of this course. This is a great course for experienced speech pathologists, occupational therapists and dietitians.

Q. Please provide more information about your upcoming three part “It Takes a Team” course series with Marsha Dunn Klein, MEd, OTR/L and Sibyl Cox, SIU pediatric dietitian and your new courses with Sandra Ettema, MD, otolaryngologist from the SIU School of Medicine and Mark Fishbein, MD, pediatric gastroenterologist from Children’s Memorial Hospital in Chicago, IL.
A. This will be a series of three different courses. Sibyl and Marsha will join us for an It Takes a Team: Multidisciplinary Treatment course. We will not focus as much on evaluation during this course, it will be focused more on treatment strategies. Sibyl Cox, SIU Dietitian will provide a great deal of information about management of food allergies and special diet needs. She will help explain nutritional intervention techniques and how to modify tube feedings as a child progresses with oral feeding skills. She will address when and how to start weaning tube feedings. Laura, Marsha and I will focus on the specifics of treatment. This course is designed for the therapist who is looking for more treatment options to add to therapy sessions.

The other two “It Takes a Team: Pediatric Swallowing Disorders” and “It Takes a Team: Digestive Tract Disorders” courses will focus on the upper airway, swallowing disorders, management of infants and children with dysphagia. Laura and I will be joined by Dr Sandra Ettema to teach about the upper airway and specifics of swallowing disorders. Dr. Ettema is not only an ENT, she is also a speech pathologist. She directs our Pediatric Swallowing Clinic at SIU. This dynamic course will be packed with information to help participants truly understand pediatric dysphagia and treat children with swallow dysfunction, aspiration and upper airway disorders appropriately.

The last course in the series will focus on digestive tract disorders and we will be joined again by Mark Fishbein, MD, pediatric gastroenterologist, from Children’s Memorial Hospital in Chicago, Illinois. Dr. Fishbein is also a co-author of our book “Food Chaining: The Proven Six Step Solution for Problem and Picky Eating” and was part of our feeding team for 10 years.

Videotaped cases will be used for instruction to maximize learning for all courses. This course series is designed for all health professionals interested in pediatric nutrition and feeding disorders. The goal of presenting this series is to provide in depth instruction and understanding of the complex challenges involved in treatment of infants and children with feeding disorders. It should be a very exciting year.

Why DO you always feel sicker at night?

2010-03-06T18:46:00.001-08:00

Why do you always feel worse at night? I googled that and the best answer I found was from Dr Green. Here’s his explanation: While sick, many people are wondering why they tend to feel worse at night than during the day. One of the reasons is that our body pressure changes when we lay down. This tends to heighten most flu and cold symptoms like, congestion, ear pain, runny nose, sore throat, and coughing. Another reason we feel better during the day is because our hormone levels differ from day to night. Hormones help us to wake up in the morning, sleep at night, and they affect how we feel pain. One particular type of hormone is cortisol, which is more active during the day. Cortisol blocks some of the flu related pain during the day and helps control our fever. However, at night our cortisol levels decrease, which means more pain and a resumption of the fever. Also, during the day our senses are on overload. There are numerous sights, sounds, and distractions that our brain is busy processing so that it doesn’t concentrate on the pain we are feeling. At night there isn’t nearly that much stimuli to distract are brains. This means our brains can spend more time focusing on the pain our bodies feel which will amplify symptoms at night. However, don’t let this fool you, just because you feel better during the day it doesn’t mean you are.

Complications of Pneumonia

2010-03-02T07:05:00.000-08:00

Abscess. An abscess in the lung is a thick-walled, pus-filled cavity that forms when infection has destroyed lung tissue. It is more commonly seen with aspiration pneumonia, when a mixture of organisms is carried into the lung. Untreated abscesses can cause hemorrhage (bleeding) in the lung, but targeted antibiotic therapy significantly reduces the danger. Drainage with a needle may also be needed. Abscesses are more common with Staphylococcus aureus, Pseudomonas aeruginosa, or Klebsiella pneumoniae, and are uncommon with Streptococcus pneumoniae.

Respiratory Failure. Respiratory failure is one of the top causes of death in patients with more severe pneumonia. Acute respiratory distress syndrome (ARDS) is the specific condition that occurs when the lungs are unable to function and oxygen is so severely reduced that the patient's life is at risk. Failure can occur if pneumonia leads to physical changes in the lungs that make it even harder for the lungs to exchange oxygen (ventilatory failure).

Bacteremia. Bacteremia -- bacteria in the blood -- is the most common complication of pneumococcus infection, although it rarely spreads to other sites. Bacteremia is a frequent complication of infection from Gram-negative organisms, including Haemophilus influenzae.

Pleural Effusions and Empyema. The pleura is a two-layered membrane that surrounds each lung.

In some cases of pneumonia the pleura become inflamed, which can result in breathlessness and chest pain when breathing.

In about 20% of pneumonia cases fluid builds up between the pleural membranes, a condition known as pleural effusion. Ordinarily, the narrow zone between the two membranes contains only a tiny amount of fluid, which lubricates the lungs.

In most cases, particularly in Streptococcus pneumoniae, the fluid remains sterile (no bacteria are present), but occasionally it can become infected and even filled with pus, a condition called empyema. Empyema is more likely to occur with specific organisms such as Staphylococcus aureus or Klebsiella pneumoniae infections. The condition can cause permanent scarring.

Collapsed Lung. In some cases, air may fill up the area between the pleural membranes, causing the lungs to collapse. This is called pneumothorax. It may be a complication of pneumonia (particularly Streptococcus pneumoniae) or of the invasive procedures used to treat pleural effusion.
Pneumothorax occurs when air leaks from inside the lung to the space between the lung and the chest wall. The lung then collapses. The dark side of the chest (right side of the picture) fills with air from outside of the lung tissue.
Pneumothorax - chest X-ray

Other Complications of Pneumonia. In rare cases, infection may spread from the lungs to the heart and possibly throughout the body. This can cause abscesses in the brain and other organs. At least one study has also linked bacterial pneumonia with an increased risk of acute heart problems, such as heart attack or abnormal heart rhythm (arrhythmia).

Kidney complications and electrolyte imbalances are common in patients admitted to the hospital with pneumonia. If not treated, these problems cause more severe illness and increase the risk of death. Hydration through a vein (intravenous) controls the problem.
Long-Term Effects of Atypical Pneumonias

Pneumonias cased by the atypical organisms mycoplasma and chlamydia are usually mild.
Atherosclerosis of internal carotid artery

Atherosclerosis of internal carotid artery
Click the icon to see an image of atherosclerosis of the internal carotid artery.

Asthma. Chlamydia pneumoniae, Mycoplasma pneumoniae, and RSV are becoming suspects in many cases of severe adult asthma.

Pneumonia

2010-02-27T05:11:00.000-08:00

Hi All.
I have been sick the entire month of February. Two weeks ago I was diagnosed with pneumonia. This has been quite an experience and one I do not wish to repeat ever again. Next week, I am off to a pulmonologist and when I recover, I will take the pneumonia vaccine and start focusing on improving my respiratory function. My chest CT suggests that I may have histoplasmosis (more on that below)as well as aspiration of gastric content during sleep.

This all started off as a respiratory virus that became a secondary bacterial infection. I let it go too long, I just kept waiting for it to pass and instead, ended up with a sinus infection, ear infection and mycoplasma pneumonia. The first time I went to the doctor I ended up at Express Care. Now, I did not have a chest x-ray and was started on a Z-pac. The doctor told me my chest "sounded clear." The Z-Pac helped my sinuses, but did nothing to help my chest. I continued to get worse but kept waiting it all out. It had to end sometime, right? Now, I am lucky I was diagnosed with pneumonia at all and I would not have been, had there not been concern that I was having a pulmonary embolism. (Long story short-I tried to go back to work and ended up being taken to ER in respiratory distress). But even in the Emergency room, two doctors told me I "sounded fine" when listening to my breathing via chest auscultation. My sats were OK too, however, I was hyperventilating, and they decided to go for the chest CT because of my continued shortness of breath. The CT revealed double pneumonia and I was promptly put on some major drugs and breathing treatments. Being diagnosed correctly is major here, people. I could have been missed again. That is scary.

Yesterday I went to the doctor for follow up and after weeks of this, 10 days of antibiotics, I am still running a 99.5 fever (while taking aspirin) and my sats were 89 with a resting heart rate of 108. Fatigue factor is out of this world. Think of all our kids who have fatigue related issues with safety when eating. Wow.

I am going to share a few of my observations about having pneumonia and sinus infection related to eating and trying to help our kids when they become ill and some more information for your reference on pneumonia below.

Breathing-Now after I knew what I had, I did a lot of things to try to clear my chest. I have worked with wonderful PT's over the years and observed a lot of chest PT sessions. I have also had had my own therapy too with myofascial release to my ribcage. I did spend some time briefly on the therapy ball to open my chest, I did deep breaths with a strong, forced exhalation three times every hour on the hour. It was really bad, but broke up a lot of horrible congestion. I walked on the treadmill for about 5 minutes when I could, just to move. It started to hurt to sit back on a chair. My lungs ached and I was wheezing. The worse part was not being able to sleep all month, sitting up in a chair or feeling like I was drowning at night. I also put myself on full reflux precautions trying to protect myself from gastric aspiration. Just the side effects of my multiple medications was enough to totally throw my GI tract out of whack. Like a snowball rolling downhill, each of these issues had the potential to cause new and even more serious problems. Other things that helped me included Ocean Saline Spray and Neti-Pot for sinus wash. Dr Ettema advised me to use the Neti-Pot for two weeks daily and then every other day. This is not pleasant and head position is key to doing this safely without pouring it all down your nasopharynx into your oropharynx. Aspiration risk is high with this product if not done correctly and without a doctor's guidance.

Eating-I felt like I was dying every time I ate a meal. I was weak and seeking food, but it was hard to eat. I felt like I had a gallon Ziploc bag of water on my chest. It was very hard to coordinate chewing/swallowing with breathing. I selected certain foods and totally rejected others. Because of my huge drugs and risk for developing c-dif I was supposed to eat yogurt. There are no words to tell you how aversive I was to yogurt and milk products during this illness. I had to put Grape Nut flakes (which I hate) in the yogurt to make it a texture I could stand. I did not want anything to do with it. I just keep imagining our kids who have to drink Pediasure or milk based supplements....ewww. Actually, I craved chicken noodle soup, chicken and noodle dishes of any kind. I had chicken noodle soup at 9 am one morning. If soup is too thin, instant potato flakes can be added to broth soups to thicken if needed. I wanted bread, crackers and soups. After having soup, I could breathe easier for a while.

Sensory note-I coughed up all this horrible stuff. Just trying to clear it safely was an issue. I started vomiting/gagging very easily. I just want to gag thinking about it now. But it should be noted, my little OT friends, that one day I used hand soap at my Mom's house and it was a product that was thick and creamy. When it hit my hand, I gagged. I was in such sensory overload then and I still am. I was seeking deep input, every part of my body hurt. I would push against the wall with my legs and try to relieve my discomfort. Some types of clothing actually hurt. I was also "dark and foul." Distraction helped, really good movies helped, but anything had potential to quickly become annoying, music, commercials with a sudden increase in volume could really set me over the edge and add to my distress.

Hydration-I avoided water and that was stupid. I KNOW better and literally for one week, I had no water. Just tea, diet soda and coffee. I didn't want it, I coughed when I drank it. I began forcing myself to drink via straw and that really helped. I could have also had Fruitsations pear applesauce, that wouldn't have been bad, it would have been easy to eat and I wouldn't have aspirated it. I could have done shaved ice too or ice based smoothies, flavored or carbonated water...I know this stuff, but I was too sick to care. Really watch those kids that have problems drinking safely. If you have a feeding tube, USE it. Don't push oral intake. It is so hard to safely take liquids when your respiratory function is compromised. Many times I felt I was aspirating and could have been. There are studies that show that typical kids with RSV aspirate during the illness and it resolves after the illness passes. High calorie foods may also help during this time to reduce volume.

Signs and Symptoms of Pneumonia in Children
Often pneumonia begins after an upper respiratory tract infection (an infection of the nose and throat). When this happens, symptoms of pneumonia begin after 2 or 3 days of a cold or sore throat.

Symptoms of pneumonia vary, depending on the age of the child and the cause of the pneumonia. Common symptoms include:
fever
chills
cough
unusually rapid breathing
breathing with grunting or wheezing sounds
labored breathing that makes a child's rib muscles retract (when muscles under the rib cage or between ribs draw inward with each breath)
vomiting
chest pain
abdominal pain
decreased activity
loss of appetite (in older kids) or poor feeding (in infants)
in extreme cases, bluish or gray color of the lips and fingernails
Sometimes a child's only symptom is rapid breathing. Sometimes when the pneumonia is in the lower part of the lungs near the abdomen, there may be no breathing problems, but there may be fever and abdominal pain or vomiting.

MORE ON HISTOPLASMOSIS AND TYPES OF PNEUMONIA
Histoplasmosis-What does that mean? Histoplasmosis is a fungal infection. It occurs throughout the world. In the United States, it is most common in the southeastern, mid-Atlantic, and central states. The infection enters the body through the lungs. Histoplasma fungus grows as a mold in the soil, and infection results from breathing in airborne particles. Soil contaminated with bird or bat droppings may have a higher concentration of histoplasma. There may be a short period of active infection, or it can become chronic and spread throughout the body. Histoplasmosis may have no symptoms. Most people who do develop symptoms will have a flu-like syndrome and lung (pulmonary) complaints related to pneumonia or other lung involvement. Those with chronic lung disease (such as emphysema and bronchiectasis) are at higher risk of a more severe infection.
About 10% of people with histoplasmosis will develop inflammation (irritation and swelling) in response to the initial infection. This can affect the skin, bones or joints, or the lining of the heart (pericardium). These symptoms are not due to fungal infection of those body parts, but to the inflammation. In a small number of patients, histoplasmosis may become widespread (disseminated), and involve the blood, meninges (outer covering of the brain), adrenal glands, and other organs. Very young or very old people, or those who have a weakened immune system (due to AIDS, cancer, or transplant, for example) are at higher risk for disseminated histoplasmosis. So sometimes, we need to look beyond the respiratory infection or pneumonia. This is just one more reason why multidisciplinary care is so important to treatment and prevention of future problems.

TYPES OF PNEUMONIA
Mycoplasma Pneumonia-the responsible organism, M pneumoniae, is a pleomorphic organism that, unlike bacteria, lacks a cell wall, and unlike viruses does not need a host cell for replication. The prolonged paroxysmal cough seen in this disease is thought to be due to the inhibition of ciliary movement. The organism has a remarkable gliding motility and specialized filamentous tips end that allows it to burrow between cilia within the respiratory epithelium, eventually causing sloughing of the respiratory epithelial cells.

The organism has two properties that seem to correlate well with its pathogenicity in humans. The first is a selective affinity for respiratory epithelial cells, and the second is the ability to produce hydrogen peroxide, which is thought to be responsible for much of the initial cell disruption in the respiratory tract and for damage to erythrocyte membranes.

The pathogenicity of M pneumoniae has been linked to the activation of inflammatory mediators, including cytokines. A recent study reported on a recent emergence of drug-resistant M pneumoniae infection; however, the study concluded that host immune maturity and not the virulence factor of the organism is a major determinant factor of disease severity. M pneumoniae is now recognized as one of the most common causes of community-acquired pneumonia in otherwise healthy patients younger than 40 years, with the highest rate in individuals aged 5-20 years. M pneumoniae causes upper and lower respiratory illness in all age groups, particularly in temperate climates, and in summer, may cause as many as 50% of all pneumonias. Mycoplasmal pneumonia can occur at any time of the year, but large outbreaks tend to occur in the late summer and fall. The incubation period tends to be smoldering and averages 3 weeks, in contrast to that of influenza and other viral pneumonias, which is generally a few days. Epidemics of mycoplasmal pneumonia tend to occur every 4-8 years in the general population and tend to be more frequent within closed populations, such as in military and prison populations. Although M pneumoniae is a common cause of pneumonia, only 5-10% of infected patients actually develop pneumonia.

Streptococcus pneumoniae (pneumococcus) is a bacterial pathogen that affects children and adults worldwide. It is a leading cause of illness in young children and causes illness and death among the elderly and persons who have certain underlying medical conditions. The organism colonizes the upper respiratory tract and can cause the following types of illnesses: a) disseminated invasive infections, including bacteremia and meningitis; b) pneumonia and other lower respiratory tract infections; and c) upper respiratory tract infections, including otitis media and sinusitis. Each year in the United States, pneumococcal disease accounts for an estimated 3,000 cases of meningitis, 50,000 cases of bacteremia, 500,000 cases of pneumonia, and 7 million cases of otitis media (1-4). The focus of this report is the prevention of invasive pneumococcal disease (i.e., bacteremia, meningitis, or infection of other normally sterile sites) through the use of pneumococcal polysaccharide vaccine. This vaccine protects against invasive bacteremic disease, although existing data suggest that it is less effective in protecting against other types of pneumococcal infection.

Severe pneumococcal infections result from dissemination of bacteria to the bloodstream and the central nervous system. Data from community-based studies indicate that overall annual incidence of pneumococcal bacteremia in the United States is an estimated 15-30 cases per 100,000 population; the rate is higher for persons aged greater than or equal to 65 years (50-83 cases per 100,000 population) and for children aged less than or equal to 2 years (160 cases per 100,000 population) (5-9). In adults, 60%-87% of pneumococcal bacteremia is associated with pneumonia (10-12); in young children, the primary sites of infection are frequently not identified.
For more info go to http://www.cdc.gov/mmwr/preview/mmwrhtml/00047135.htm.

Viral Pneumonia Causes
Viral pneumonia can be caused by influenza virus, respiratory syncytial viru s (RSV), and the herpes or varicella viruses, including those that cause the common cold (parainfluenza and adenoviruses).

Influenza A and B usually occur in the winter and spring. In addition to the respiratory symptoms, you can get headache, fever, and muscle aches. Your chance of catching the flu falls a lot (but is not totally prevented) if you get a "flu shot" every year.
Respiratory syncytial virus (RSV) is most common in the spring. It usually infects children and can cause outbreaks in daycare centers.
Herpes or varicella pneumonia are rare unless you are infected with chickenpox.
Adenovirus and parainfluenza viral pneumonias are often accompanied by cold symptoms such as runny nose and pinkeye (conjunctivitis).

Aspiration Pneumonia-
Aspiration is the passage of food or liquid through the vocal folds. People who aspirate are at increased risk for pneumonia. People without swallowing abnormalities routinely aspirate microscopic amounts of food and liquid. Gross aspiration, however, is abnormal and may lead to respiratory complications.

Several factors influence the effects of aspiration: quantity, depth, physical properties of the aspirate, and pulmonary clearance mechanisms. Aspiration of larger quantities of material is riskier than aspiration of minute quantities of food or liquid. Aspirating material into the distal airways is more dangerous than aspiration into the vocal folds. Solid food may cause fatal airway obstruction. Acidic material is dangerous, because the lungs are highly sensitive to the caustic effects of acid. Aspirating material laden with infectious organisms or even normal mouth flora can cause bacterial pneumonitis. Pulmonary clearance mechanisms include ciliary action and coughing. Aspiration normally provokes a strong reflex cough. If sensation is impaired, silent aspiration may occur. The severity of aspiration can be described by estimating the percentage of the total bolus aspirated or by estimating the depth of bolus invasion into the airway. The usual site for an aspiration pneumonia is the right lung. Aspirated material will enter the lower lobes when the patient is standing. If the patient is supine then the aspirated material will enter the apical segment of the lower lobes or the posterior segment of the upper lobes. Assessment for dysphagia/swallow dysfunction is recommended when the child has recovered. Hospitalization may be required for management of the illness. Treatment and management measures vary depending on the severity of the pneumonia and type of dysphagia.

With treatment, most types of bacterial pneumonia can be cured within 1 to 2 weeks. Viral pneumonia may last longer. Mycoplasmal pneumonia may take 4 to 6 weeks to resolve completely

Talk to your doctor about all these issues when kids are ill with pneumonia. This is a very serious illness and hard to recover from, but there are many things we can do to help these children (and adults) feel better.

Homemade baby food for Max and Alex's ongoing feeding program

2010-02-08T11:41:00.000-08:00

Check out Jessica's post about making her own baby food and feeding two children now. http://newkindofnormal.blogspot.com/. There is also a link to her blog on my blog lists below to the right.

Lancet Retracted Study That Claimed a Link Between Autism and Vaccines

2010-02-02T17:10:00.000-08:00

(CNN) -- The medical journal The Lancet on Tuesday retracted a controversial 1998 paper that linked the measles, mumps and rubella (MMR) vaccine to autism.
The study subsequently had been discredited, and last week, the lead author, Dr. Andrew Wakefield, was found to have acted unethically in conducting the research.
The General Medical Council, which oversees doctors in Britain, said that "there was a biased selection of patients in The Lancet paper" and that his "conduct in this regard was dishonest and irresponsible."

The panel found that Wakefield subjected some children in the study to various invasive medical procedures such as colonoscopies and MRI scans. He also paid children at his son's birthday party to have blood drawn for research purposes, an act that "showed a callous disregard" for the "distress and pain" of the children, the panel said.

After the council's findings last week, The Lancet retracted the study and released this statement.
"It has become clear that several elements of the 1998 paper by Wakefield et al. are incorrect, contrary to the findings of an earlier investigation. In particular, the claims in the original paper that children were 'consecutively referred' and that investigations were 'approved' by the local ethics committee have been proven to be false. Therefore we fully retract this paper from the published record."
Has autism touched your life? Share your stories, thoughts on vaccination study
Dr. Richard Horton, editor of The Lancet, said he reviewed the General Medical Council report regarding Wakefield's conduct.

"It's the most appalling catalog and litany of some the most terrible behavior in any research and is therefore very clear that it has to be retracted," he said.
CNN was unable to directly contact Wakefield.

He released this statement through a representative: "The allegations against me and against my colleagues are both unfounded and unjust and I invite anyone to examine the contents of these proceedings and come to their own conclusion. In fact, the Lancet paper does not claim to confirm a link between the MMR vaccine and autism. Research into that possible connection is still going on."

The Centers for Disease Control and Prevention praised The Lancet's retraction, saying, "It builds on the overwhelming body of research by the world's leading scientists that concludes there is no link between MMR vaccine and autism. We want to remind parents that vaccines are very safe and effective and they save lives. Parents who have questions about the safety of vaccines should talk to their pediatrician or their child's health care provider."

Since its publication, Wakefield's study has attracted many critics who argued that the work had been so flawed, it should not be regarded as scientific.
Wakefield theorized that the measles vaccine caused gastrointestinal problems and that those GI problems led to autism. In his view, the virus used in the vaccine grew in the intestinal tract, leading the bowel to become porous because of inflammation. Then material seeped from the bowel into the blood, Wakefield's theory said, affecting the nervous system and causing autism.
But subsequent research has been unable to duplicate Wakefield's findings.

Dr. Andrew Wakefield acted unethically in conducting autism research, a British panel found.
A September 2008 study replicated key parts of Wakefield's original paper and found no evidence that the vaccine had a connection to either autism or GI disorders. The study, conducted at Columbia University, Massachusetts General Hospital and the CDC, also found no relationship between the timing of the vaccine and children getting GI disorders or autism.

The Wakefield study has been a key piece of evidence cited by many parents who do not vaccinate their children because of autism fears.
"The story became credible because it was published in The Lancet," Alison Singer, president of the Autism Science Foundation, said Tuesday. "It was in The Lancet, and we really rely on these medical journals."

Singer, the mother of a child with autism, added, "That study did a lot of harm. People became afraid of vaccinations. This is the Wakefield legacy: this unscientifically grounded fear of vaccinations that result in children dying from vaccine-preventable diseases."

Retractions are rare in medical journals and usually occur as a result of fraud or plagiarism, said Marcia Angell, a former editor of The New England Journal of Medicine.
"It is a major event when there is a retraction like this," she said. "It sounds like there was a misleading design of the study ... patients not randomly chosen. There were ethical violations."

William Schaffner, professor and chairman of the department of preventive medicine at Vanderbilt University School of Medicine, described the journal's level of action as "unprecedented."
"Since Wakefield's study came out, some 20 other studies have come out, and each one of these studies, done by different researchers, in different populations and in different countries, has denied the associations between vaccines and autism," he said. "Scientifically, this story is over."

Schaffner added, "This series of events is damning and should refocus all of us in the field to find better methods of diagnosis and treatments."
The Lancet came under criticism for the initial publication of the paper 12 years ago.
"The mere publishing of this paper created something that will never fully go way: the false notion that MMR caused autism," said Dr. Paul Offit, author of "Autism's False Prophets: Bad Science, Risky Medicine, and the Search for a Cure," and the chief of division of infectious diseases at the Children's Hospital of Philadelphia.
The retraction did little to change the opinion of Rebecca Estepp, a spokeswoman for Talk About Curing Autism.

Estepp said her son has autism and bowel problems. She said she remains convinced that he had a vaccine reaction and that Wakefield's research helped doctors identify how to help her son.
"I guess the GMC can say whatever they want to say for the rest of their existence, but I know that my son got better because of Dr. Wakefield," she said.
Generation Rescue, an advocacy and support group founded by actress Jenny McCarthy, whose son has autism, expressed support for Wakefield. A co-founder of the group, JB Handley, called him "a courageous honest doctor who told an inconvenient truth." McCarthy is a high-profile proponent of the belief that childhood vaccinations may play a part in the condition.

Generation Rescue criticized the General Medical Council's judgment on Wakefield with this statement: "The sole purpose of the GMC's ruling this week is to try and quell the growing concern of parents that the expanding vaccine schedule and the remarkable rise in autism are correlated."
It also advised parents to do their own research before deciding to give their child the MMR vaccine.
Cases in which U.S. families have sued alleging a vaccine-autism link have had mixed outcomes.

In 2007, a U.S. federal program intended to compensate victims of injuries caused by vaccines concluded that a 9-year-old girl's underlying illness had predisposed her to symptoms of autism and was "significantly aggravated" by the vaccinations.
Two years later, three American families sought compensation from the Vaccine Injury Compensation Program, but the panel ruled that they had not presented sufficient evidence to prove that the vaccines caused autism in their children.

CNN's Elizabeth Landau, Sabriya Rice and Miriam Falco contributed to this report.

Food Chaining -A Method About Life With Food

2010-01-18T03:28:00.001-08:00

I wrote this as an answer to a question on the blog and decided to expand it and post it because I think these are some very important points to remember.

My therapy is a method, not a protocol, but my more than that, my therapy is an experience, every session we experience something together about life and about food. For example, this is how I think about sessions...On Monday I made quesadillas with Jack. Not, Jack ate x numbers of this or touched this food x times. We had an experience together. We had fun. When you go out with friends, does someone count your bites? We had a session about food but we also learned something. Where quesadillas come from, how you say "quesadilla," and for fun, can you say it three times really really fast? He wasn't afraid and I said it the fastest. He now knows what the brown spots on a tortilla shell are. He made one for his dad in my electric skillet. We used cookie cutters and pizza slicers to cut it so he could see what his teeth would have to do too. We rolled up little strips of quesadilla and the three of us had a little meal. We picked out some things to go with it that we liked to eat. We picked out our divided plates and our drinks. We cleaned up together. I told him it might be fun to show Mom how to make one for his dad sometime like we did in therapy. NOT go home and make quesadillas four times this week because that is the kiss of death for learning to enjoy a food and no one eats like that. His family emailed me that they made them at home this week and he ate about 1/4 of it, rated it a 4/5 on his food chaining rating scale when the meal was over. My goals: educate, explore, explain, experience and enjoy all wrapped up in one experience that became something real world. A session that carried over to life and hopefully will become one more food Jack likes. Cheese and crackers became quesadillas which may become thin crust cheese pizza too, or not. This is about the yes AND the no. If there is a huge resounding, "I can't tolerate that"...whole body NO, then move on. You have a wide range of options or re-visit that food later. You went too far, did too much or picked something really negative not based on that child's sensory individualized eating profile. Start off with the learning to eat side of this. "Hey Jack, there is cheese and bread and we can do all kinds of crazy things with it! Did you know that?" Cookbooks, pictures, cooking shows, making your own cooking show or commercial, blowing up cheese in the microwave to see what happens to it.

One more thing...ALL kids can learn about food, the same way they learn about the activities of daily life. If you are verbal or non-verbal, you can and you do learn. I am currently deeply crazy in love with one of my patients who cannot speak. He also cannot see well. He KNOWS it is me no matter where I see him (radiology, doctor's office, mall, treatment). I say his name and clap my hands, that is our greeting. He vocalizes and I find out what kind of day he is having. He answers me with a yes by rocking his body back and forth. We hold hands. He tells me no by dropping his head. We giggle and talk. We listen to music. We eat. I hug him goodbye and he locks his wheelchair over and over because he doesn't want to leave. We communicate so much. He has strong opinions if you look and listen. He makes me smile just writing this. Words are just one aspect of our communication, our interaction and the very human experience we have together. There is a little boy in that wheelchair. Though some would just push food in his mouth and force him without acknowledging his person-hood. Simply because he cannot talk. Almost like he is an object instead of a child. Our job is to teach kids, all kids, that you can enjoy and experience food that feels good to you and that you can refuse food that does not. There are the ways we can make food nutritious and make you healthy for life. Teach kids that some things you will learn to eat in time too. Most of us acquire taste for fruits and especially for vegetables later in life, teach them that. But overall, kids need to know that they should be and deserve to be treated with respect at the table all the time.

ALL kids, ALL diagnoses, ALL the time.

So, spend time on the social side with kids. Treatment is as much about the relationship as it is about the food. We laugh, we talk, we pretend, we cook, we look, we explore, we try in a way that fits our sensory need, we critique and rate and we live life with food in it, as Alicia says so eloquently. For more from Alicia, visit the Autism Life.com.

One more thing...I think it is hard when we act like food is a ritual. It is not. Don't forget that we eat differently all the time and we approach food differently based on what is happening around us. Think of how you are at holidays, very focused on food, in a cafeteria, very focused on getting out of there..eating at a picnic, a baseball game, in a car, on your couch. We adjust our approach to food, our positioning, our pace, our bite size and our focus (think zoned out staring at a movie screen) vs trying some new and novel food we have never eaten before with hyperattention to what you are doing. Some kids CANNOT handle the food and the environment, so they don't eat or eat a few bites of a very familiar food. It is too much to process it all. They don't have enough control of the situation to eat, so they simply drink or wait until school is over and eat on the bus or in the car. We must make kids skilled eaters who have sensory systems that can shut out the background noise, smells, movement and varying sources of stimulus. Our kids set up their rigid walls because they have to. They are not confident eaters so they gravitate to the simple, mash it type food, crush and crunch and push it down with liquid. Oral motor wise, the open mouth posture of eating, makes you eat simple food. There are reasons kids do what they do, eat what they eat, drink what they drink. Study and observe, learn and ask them what works. Build positive after positive and you will truly meet your goals and give a child the gift of enjoying a life with food.

Who Makes Progress and Who Does Not?

2010-01-17T08:11:00.001-08:00

I get this question a lot. Does this program work. Yes, it does. Our study on Food Chaining showed that in the right hands as directed by our team, with the right approach it worked for all the children in our study, regardless of diagnosis. Those children 8/10 had previous feeding therapy for over six months but had no increase in their food repertoire (number of accepted foods in the diet). Three months of food chaining led to a significant (sometimes major- 5 foods to over a 100 foods in the core diet) increase in foods and food groups in all cases with no treatment failures.

But a lot of things were in the right order, we had our ducks in a row and the treatment plan was followed as written. I see a lot of people and I tell them to let me know what is happening. I tell them before they come that this is hard work and I am not going to do it for you, I am going to help you do this yourself. No magic wand here. It takes time and patience. When you call me after six months or so and tell me that you haven't made gains, I am going to ask you a lot of questions. It never fails that there are four or five recommendations that have not been implemented. I know from Luke's problems with CVS, I had to do the biofeedback, the reflux meds, the supplements, the ENT visits, the GI visits, the Zofran/Imitrex, the education for everyone who took care of him to see the warning signs and notify me when he had stomach pain. It is not easy. So I am writing this to help people know before they come what to expect and that this is team effort and you are part of the team. This team effort has joint and shared responsibilities.

Therapists and parents, caregivers...Just know that if you pick and choose what you will do from a program, the treating team does not know the plan is not in order and cannot continue to develop an effective program for you. If the child does not go to GI or pediatrician and manage reflux, allergies, constipation or diarrhea, you have a hole in your program and it will negatively impact the outcome. If we don't use a supplement or a schedule of liquids and meals/snacks and we don't improve weight and create desire to eat, it won't work. If you don't use the therapeutic utensils, cut food in strips, puree food, change products (cups, bottles, straw cups) then the child will not be able to develop skilled, sophisticated chewing, biting and drinking skills and they will continue to gravitate toward the simple, easy to eat food like crackers, chips and chicken nuggets or limit their intake. If you pressure and create anxiety at the meal, the child will dig in even deeper and not eat. If you don't have a swallow study completed and don't thicken liquids or modify them when I tell you your child has a swallowing problem, then your child will not get better. If you don't seek a good sensory trained OT and follow the program, then this raw sensory system is going to be a major hurdle that will be very hard to overcome. If you don't teach your child about food by exploring with the senses, going to the websites, using coloring books, themes (baseball-foods at the park), divided plates and tiny tastes, it won't work. Pushing food on a child won't work. Giving a child food that is completely outside their sensory tolerance level won't work. Do you eat food you hate? Do you go back to a restaurant that made you sick? Do you want to waitress to sit down and push food on you and make you eat? Do you swallow when someone yells "swallow, don't chew, swallow" at you? Why do we do this to kids and then expect them to eat?

Do your feeding goals include the word "enjoy"....?

The treatment program must be whole. Just like giving a child half of his antibiotics, you haven't treated the problem. If you don't set up basic behavioral guidelines and follow through when your child pushes back, if you don't all agree with the plan and do different things when your child tests you, it won't work. Food is the last thing and simply combining foods will not work. All the rest of it has to be in place.

Digestion, nutrition, behavior, sensory, oral motor and swallowing...parts of that firm foundation of what you are trying to build. If you build a house without doors, it is not much of a house, is it? Think of this as a process where you set your child up for success. But don't think that the problem is simply going to go away without a lot of work. Is it worth it? Oh yes. Is it hard. Yes. Does it work? Yes.

Gluten Casein Diet Study

2010-01-13T07:37:00.000-08:00

Elder et al The Gluten Free, Casein Free Diet in Autism: Results of a Preliminary Double Blind Clinical Trial (2006) This is the latest one and probably the most well designed study (double blind, randomized study) on a difficult area to research. Now, there are still minor flaws in this study too, however, it is the best evidence we have to date. Showed no statistically significant differences on the diet. Studied 15 children with autistic spectrum disorder.

The Knivsberg study in 2002 shows a benefit but there were many limitations in how this study was conducted.

Developing a Feeding Program that Works

2010-01-10T15:12:00.000-08:00

I am seeing more and more patients from out of state these days. I am developing programs and monitoring kids who don't have the luxury of coming to treatment and I don't have the luxury of time with them in diagnostic therapy. I have to pull something together based on our pre-interview, medical records, one extended day in clinic and the videos I see from home. Not easy.
However, I do want to write something in this post to try to help families and therapists understand my philosophy and approach to children with feeding disorders. The most frequent questions I receive are about what I DO in treatment. How many # of times do you introduce a child to a targeted food, when to try something new, etc. Food is the last part of my care programs. I am a diagnostician and an observer. I am going to be looking for the other contributing factors that make a child uncomfortable, fearful or unsafe while eating. I am going to try to help them sleep better, be better nourished, be less fearful and try to take stress off the table (pardon the pun there). I have a team of people helping me. The food and the individualized eating profile comes last in my list of priorities. First is taking care of what has created this problem in the first place. Usually that is a list of challenges to address, not just one issue.
What you also need to know is that Rules and Protocols are not me and not in my approach. That puts the cart before the horse. I don't know what is going to happen when we cook and eat together in our sessions. I might be completely surprised and I go where success happens. I would abandon a "plan" if a child shows a good response to something unexpected. If I am thinking "Now, I am going to target fish for the next two weeks"- that will not work and besides that...yuck...who eats that way? What if he hates fish? Bye bye fish. That is ok. I pick things kids are VERY likely to like because I study the child in front of me instead of a protocol or a list of rules. Range drive volumes and percentages are also not me. Food Chaining is about the social aspect of food, the celebration of what food can be, normalizing an activity of daily living, finding joy in exploring food, observing reactions and tailoring my responses to what I see. Thinking about " X Number of exposures" is something that will get you ahead of yourself. What you SEE each day determines where you go. The rating scales and the child's success with a food is what creates your road map for future sessions and gives you ideas to share with the family that week at home.
My sessions are fun. Food is fun. My kids feel so safe with me that they put their walls down. We are not "in therapy" we are living life that day, learning something, laughing together, having fun, cooking, eating and building life skills.
Is Food Chaining for you? Can you think on your feet? Can you roll with the punches? Don't plan ahead, think about what foods might appeal to your patient but live in the moment. Day to day, observation to observation, taste to taste...Food Chaining done wrong and in the wrong hands can be a disaster, done right, can change a life.

Looking for Therapists Who Want to Do Food Chaining in NY

2010-01-10T07:13:00.000-08:00

Hi All!
Just taught a course in NY. There are people asking for my help finding team care and/or therapy services for young children as well as older, developmentally challenged young adults. There are kids who are in need of treatment, if you are practicing in that area or know of feeding teams, please comment or email me your contact information at preemietalk@comcast.net.

Spokane, Washington Job Opening-Feeding Clinic

2009-12-24T06:55:00.000-08:00

Any dynamic, experienced or very open to learning, SLP's that may be interested in moving to beautiful Spokane, our friend Lisa Galow let us know that her feeding clinic has an opening for a therapist. The clinic is open 4 days a week. Absolutely beautiful facility and gorgeous area.

If you are interested, call 509.953.9320

Tips for Introducing New Foods

2009-12-24T06:53:00.000-08:00

TIPS FOR INTRODUCING NEW FOODS:
We suggest that that the parent or therapist offer targeted food on a divided plate one time per day.
Set a low pressure routine for meals. Have the child help put out his placemat, divided plate, utensils and cup for prep for eating. Have him participate in food preparation or serving as much as possible.
Do not try to trick him.
Always place one or two foods on the plate that he is comfortable eating on the plate.
Once the food is in front of the child it belongs to him. This is that R-E-S-P-E-C-T part of treatment.
Teach kids what food is. One of my little patients told me the dark spot on a green pea was blood. He thought that vegetable was a bug!!! I have had kids think the dark spots on a quesadilla was dirt and even excrement.
Smell is key. If they don't enjoy the smell of a food, the child is going to have a very, very hard time eating it.
We all eat what we like and this is a child's right too.
Rotate the foods he accepts as much as possible as risk for losing a food that is eaten daily from the diet is very high.
Put a tiny amount of a new food on one section of the divided plate or a small separate plate and designate this as the looking/learning or touching place.
Make sure your child feels comfortable, is seated adequately and knows that he does not have to eat the new food yet.
Pushing someone to eat a new food increases anxiety and results in deeper aversion. Model eating the new food.
Do not say, "take a bite." Think of how you would explore a new food from a foreign country or at a restaurant, you need to know what it is, how it feels, how it smells and you would probably lick the food or take a very small bite to explore flavor. Does the waitress sit down and force food on you? No. This is how we should approach feeding therapy. Force or behavioral approach to eating is not recommended and is not what research shows results in successful, independent eating (Reference-Contemporary Pediatrics 2005).

Newspaper Interview on PIcky Eating

2009-12-22T02:40:00.000-08:00

I have been interviewed by the Wall Street Journal, The Chicago Tribune, Parents Magazine, Reader's Digest, Fox News Morning Show in Chicago and the little home town paper the Effingham Daily News in Effingham, Illinois did a better job than anyone! Wow. See link! I love it when people tell the story right.
http://behavioralhealthcentral.com/index.php/20091221159426/Latest-News/picky-eaters-effingham-daily-news-ill.html

Just a Spoon Full of Sugar....Uh....Nope!

2009-12-21T03:30:00.001-08:00

I have started acupuncture again. If you wish to read about my recent problems with tennis elbow/carpal tunnel, go to my "A Day in the Life with Cheri and Randy" Blog. There is a link to the right on my blog lists. In a nutshell, I have a long list of past injuries and illnesses and I can't handle pain meds without GI bleeds. So I thankfully respond very favorably to acupuncture. Dr. Zhai Na, my doctor of Chinese medicine, gave me an herbal drink in addition to my acupuncture treatment. One treatment took my pain down 80% and gave me function of my right arm again. Now, she is convinced that many of my problems stem from digestive tract disorder and she is so very, very right about that. She gave me a small jar of herbal powder to mix into any liquid twice a day. She told me, "tastes bad."

Ruh Roh, Reorge.

Understatement of the year.

However, it FEELS great. As soon as I drink it, I feel this soothing of the GI fire all the way down. Beyond what any traditional medicine I have ever taken has done for me. But there is a problem. A big one. I am a super taster with sensory processing disorder. This isn't that bad during the drinking itself, it hits you about a nanosecond later. AFTERtaste. Oh my. The aroma of the herbal powder is also an issue. So sensory girl, has two very big hurdles here. Now I am in a battle between knowing what I need to do and what the lady who holds big needles expects me to do (and will know if I don't) and my sensory aversive self who is starting to dread even seeing the jar of medicine. My anxiety is building too. I am an adult who understands all of this and I struggle. I need to just do it, but it is harder than I thought it would be. Then I am thankful for the experience as I imagine what my kids feel every day, every meal when faced with a food that is so aversive to them or has a terrible aftertaste, like, say mayonnaise on a stick? (See "First, Do No Harm" for more on this story)

Now, I have tried all my chaining tricks and by the way, a small amount of Sprite helped with the drinking part, but I can't get anything to my mouth (toothpaste, more Sprite, peppermint, etc) fast enough before I am hit with a wave of aftertaste. I need to be creative here and keep thinking. The taste is not like anything you typically experience so finding something strong enough to mask it that blends with it and does not make it worse will take some thinking on my part. I will keep you posted on my progress or lack thereof.

First Do No Harm

2009-12-15T02:40:00.000-08:00

Physicians take the oath of First, Do No Harm. I feel that this should be added to our practice as therapists. First Do No Harm, let's make t-shirts, shall we? I am starting this post with a little story about myself and then on to apply this to our treatment of children.

I am hurt AGAIN and back in therapy AGAIN. Let me just say, "I hate therapy." Now, I LOVE my therapists and I have fun talking to them and laugh when they all scratch their heads and look at me and try desperately to put all the pieces together to treat the complex, neurologically hot, medical-freakshow-mess that makes up Cheri Fraker. But I HATE therapy. Therapy says to me "remember your past Cheri, remember no more babies, remember working at the bad place, work comp,remember pain that took you out of your life, made you dark and foul, made you angry, derailed your joy?" In other words, therapy brings up a lot of garbage and puts me in the "I will defeat the pain" mode of thinking. That is wrong, I need to respect and listen to the pain which is part of me, which tells me how to treat myself each day to help me recover. Pain limits me and limits make me angry. I need to remind myself that pain is a mirror that helps me care for myself. Now, the wonderful talented Linda Crews, PT at Koke Mill gave me a new perspective on therapy, she helped me be part of my own treatment and she helped me build myself into a stronger, healthier me and helped me through the nightmare last year of vertigo and balance problems. She was a gift to me last year.

This new injury is a horse of a different color, the mystery mass on my wrist, carpal tunnel, tennis elbow with very, very unhappy radial, ulnar and medial nerves and some kind of cervical issue has derailed me again. Last night after therapy my pain was a 9 on the pain scale. I was in agony. Nothing could stop it. Now my dear new OT is trying to figure out what to do with me. It isn't easy. She said she needed at least three hours to evaluate me. I told her that everyone says that. I was born blue (cord wrapped twice around my neck-no math ability), cannot take pain meds as I have GI bleeds, I have gluten intolerance which makes me sensitive to many forms of treatment, I react to kinesiotape and look like I have leprosy, I react to heat and cold and touch in ways that others do not, I have hypotonia and what they have been taught to do often makes me much worse. I also have benign positional vertigo, six discs affected from past injuries and on top of all of that, I have sensory processing disorder. A PT/OT Nightmare.

In other words, I don't fit the mold.

In MY therapy world, THE MOLD is often the problem.

Which brings me to our kids and feeding therapy. In the past few months I have been informed of treatment practices implemented by other therapists and/or graduate students for several of the children I am treating as a consultant with the team. They are not good practices. Some kids are subjected to protocols and treatment is not even specific to their needs. It is not making them better. At one school, the principal told us he knew when it was "oral motor time" because he could hear the screaming. One therapist was using a vibrator "as a weapon" (her words here, not mine) to get a child with autism and sensory processing disorder, to do what she wanted her to do. Did I stop these practices, you bet I did and I have debated over whether or not to post this, but today, as a therapy patient myself I am compelled to write. It hurts to write, my typing is painful, but write I must.

Let me share an example. One of my children, who is on the autistic spectrum, was given mayonnaise in therapy. On what, you ask? On a tongue depressor. Mayonnaise as a food, not as a condiment. Why I asked? Because you see it. It is something you see out on tables somewhere and therefore, because it is seen, it is eaten. Now I often keep my mayo in a fridge, so I don't know where it is seen and I don't know if I feel safe eating your mayonnaise, but I digress. Let me just say it has taken me weeks to deal with this. This recommendation came from a grad student who acts as if he knows everything and I mean everything. Alicia and I drove three hours to go do a consult at this school and this kid did not listen to a word we had to say. Oh young grad student, you know nothing. Nothing. NOTHING. Telling yourself you know nothing is the greatest gift you will ever give yourself as a clinician. I love therapists who tell me they don't know what to do. I will hire people who don't know what to do but want to learn. I love people who ask for help. I learn from everyone I know. I learned from teachers and aides when I worked in special education, I learned from doctors and nurses when I worked NICU and ICU and rehab. I learned from psychologist and dietitians and social workers and parents and KIDS. I want to learn more every single day that God gives me on this earth. I know a lot, grad student, and all I know in 23 years of treatment is still NOTHING in the world of things to know about treating children. You had an opportunity to learn from me, but your pride got in the way. This isn't about you, it is about a child.

So I let me break this down for you. Mayonnaise is a CONDIMENT. It is not food. What parent opens the fridge and puts mayo out for their child? No one. Would you ever, ever recommend bites of mayo for the typically developing child with feeding aversion? Where are you going to go with that? Do you really want him to eat a jar of mayo? Is there anything functional in that recommendation? Nutritional in that recommendation? The child is on a supplement that is the entire focus of our treatment right now to help with nutritional rehab. You took away the supplement he was drinking on his own to make him endure the mayo. Why? He eats nothing that is even close to that texture. He enjoys lettuce and vegetables. Think of all the places that can take you. These negative experiences come at great cost. No wonder he won't sit down at the table. I wouldn't. Would you ever put mayo on a tongue depressor for yourself? A tongue depressor has a nasty flavor all it's own and should be associated only with the doctor's office or in the food realm...a Dairy Delight at Dairy Queen. Have you ever opened the fridge and scooped out a big spoonful of mayo. No. Did he enjoy this in any way? No. No. No.

But the bigger issue here for me is the lack of understanding of this child's humanity. He is a human being who just so happens to have autism. He is a child, a little boy, a human being FIRST. His autism is not an excuse for just giving him anything that is seen. It shows a lack of awareness of this child, which leads to (intentionally or unintentionally) a lack of respect for him as a fellow person with feelings, emotions, thoughts, rights, dreams and fears. His communication challenges are present, but he IS a little boy and that communication barrier does not make him any less human, any less worthy of our respect. He communicates, but you do not hear him. The big A doesn't mean he doesn't feel what we "neurotypicals" feel.

He was harmed.

I live by the motto, bad therapy is worse than no therapy at all. I have had bad therapy in my life. I have had sadistic therapists who did not see me as a person tape me severely and create a landslide of problems. I have had people make me cry on the therapy table. It took me a while to understand what was happening to me and when I did, I FIRED them. They harmed me.

Therapy is a tricky business. We are the product to a family. They deserve our best. They deserve our honesty. If you don't know something, find out. If you aren't talented enough to meet that child's needs, find someone who is or work with them to learn, read books, study, go to courses until you are smart enough to meet their needs. Ask for help. Use common sense. Give children respect. Do not do things that you would not do for a "typical" child. Do not make the table a horrible experience that they will remember always. Do not have sessions where children gag, retch and vomit in treatment or in the car on the way to therapy to see you. Do not force or restrain and think this will lead to joyous, happy eating. Do not bully or belittle parents and make your failures their fault. Do not make treatment a"trauma."

Do no harm.

Do no harm.

Marsha Dunn Klein Joins Fraker and Walbert for a Feeding Course in San Antonio, Texas Jan 29, 30 2010

2009-12-08T03:22:00.000-08:00

To register go to www.cepauniversity.com!
Laura and I will be joined by Marsha Dunn Klein to teach a combined Food Chaining Meets The Get Permission Approach course in warm, sunny San Antonio. This is such a treat and last time this course had rave reviews.
More on Marsha (If you don't know this, she has written most of the books out there in the world of feeding and many with Suzanne Evans Morris)

Marsha Dunn Klein, MEd, OTR/L, founder of Mealtime Notions LLC, is a pediatric occupational therapist, author and educator who specializes in eating and mealtime issues with infants and children. She has a private practice in Tucson, Arizona, Mealtime Connections, LLC with four other pediatric therapists. They evaluate and treat children who have feeding challenges. Her energies are focused on helping children who have special motor, sensory and mealtime challenges.

Marsha has a bachelor of science degree in occupational therapy from Sargent College of Allied Health Professions at Boston University and a master of education in special education from the University of Arizona. She is Neurodevelopmental Trained (NDT).

Marsha has over 35 years experience assessing, treating, and working in partnership with families of children who have cerebral palsy and other neurological issues, prematurity, sensory processing disorders, visual impairments, genetic and metabolic disorders, as well as autism. She works with many families whose children are fed by supplemental tube feeding. Marsha helps with the oral motor sensory, tube feeding aspect of feeding. Support is given through individual evaluation and treatment, education, parent and professional consultation, education workshops and resources.

Here is a link to Marsha's numerous books on feeding:
http://mealtimenotions.com/BooksNVideotapes.htm

Augmentative Communication on your iPod Touch or iPhone

2009-12-08T02:31:00.000-08:00

http://www.proloquo2go.com/buy/article/4-steps-to-proloquo2go

This is a 200.00 application for a more complex AAC device right on your iPod Touch or iPhone. So for 400.00, you have entered the world of possibilities with another version of AAC. We still recommend a good assessment by a skilled provider to determine what a child needs, but these are other options to bring communication to our patients. You can buy speakers too if additional amplification is needed. Here is Alicia's comment on it..."The Proloquo is pretty powerful compared to the iConverse BUT it is not an introductory program for a new AAC user. It would be good for someone who is older or is a part time user". So don't just jump in there too fast. But still, WOW!!! Finally someone is seeing the light in a big, big company of how to make AAC more than it was before.

Now, iConverse is a $5.99 (yes five dollars) application that has 6 communication buttons but it has the wonderful option of allowing you to make your own buttons with your own photos. Oh yes, get a good hard cover for your iTouch to protect it, but this is really something. I like to use the Flip Video camera to make my own mini instructional movies for the iTouch. Endless applications! Mini social stories, process stories at your fingertips!! How do you put a movie you make yourself on the iTouch? Again, I turn to the expert (and brains of the organization, Alicia):
1. When you have the Ipod connected to the computer and iTunes, go to the movies section on the left hand side under Library.
2. Click on the video you want to highlight it, then go to the Advanced tab at the top.
3. Click on Create Ipod or Iphone Version. It will create a second copy then and that is the one you can drag and drop into the movies section on the left hand side under Devices. Should work once you create the ipod version.

There are also numerous free applications with wonderful photographs of animals, food, zoo or farm with realistic sounds, flash type cards that are fun and very colorful. Thank you Alicia and Larry for finding these for me.

December 2009 and January 2010 Courses

2009-11-26T04:55:00.000-08:00

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.

Any therapists in Florida familiar with Food Chaining?

2009-11-20T14:03:00.000-08:00

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.

Treatment Guidelines for Children

2009-11-14T11:09:00.000-08:00

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

Feeding Course with Marsha Dunn Klein in San Antonio in January 2010

2009-11-13T11:32:00.000-08:00

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.

Treatment Tips: Summary of Intervention for the First Year of Life

2009-10-16T18:49:00.000-07:00

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.

Plain, white divided plates for food chaining

2009-10-13T15:46:00.000-07:00

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

iPhone and iPod Touch

2009-10-05T03:51:00.000-07:00

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?

Dallas! October 16 and 17

2009-09-30T04:15:00.000-07:00

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/.

Thank you, Nashville and Dallas, TX here we come!

2009-09-28T01:36:00.000-07:00

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.

Nashville, TN Food Chaining Course Sept 25 and 26th

2009-09-20T18:51:00.000-07:00

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.

Family Care for Children with Special Challenges

2009-09-17T01:53:00.000-07:00

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.

Globus Hystericus

2009-08-25T22:27:00.000-07:00

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.

Pediatric Feeding Therapy: What to Do and How When and Why to Do It?

2009-08-15T05:29:00.000-07:00

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.

How do I chew? Let me count the ways?

2009-08-06T04:31:00.000-07:00

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.

Question of the Week: Structuring Your Treatment for Success

2009-08-04T16:52:00.000-07:00

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!!

My Luke...Our journey treating Cyclic Vomiting Syndrome Continues

2009-08-01T06:30:00.000-07:00

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.

Diagnosed with Oral Aversion or Feeding Aversion? Getting Started: Parents, Therapists have you covered your bases? Ask the right questions!

2009-08-01T06:05:00.000-07:00

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!

Fall Courses

2009-07-26T08:51:00.000-07:00

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!

Food Clusters

2009-07-11T07:58:00.000-07:00

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!!

Food Chaining for Older Children....Magic Moments

2009-07-02T03:33:00.000-07:00

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.

Getting Started with Food Chaining: "Z" Continues to Make Gains

2009-07-02T03:09:00.000-07:00

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.

More Food Chaining Ideas for Z

2009-05-30T05:44:00.000-07:00

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!

One Day Course June 6th Peoria, Illinois

2009-05-28T19:50:00.000-07:00

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

Laura and I are going to Athens, Greece to present August 2010

2009-05-12T18:50:00.000-07:00

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!

Update on "Z"...Using Food Chaining at Home

2009-05-04T17:39:00.000-07:00

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!

More On How to Use Food Chaining At Home: An Update on Our Little "Z" Just getting started with Food Chaining

2009-04-25T18:55:00.000-07:00

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

Case Study: "Z" How Do I as a Parent Get Started Trying Food Chaining Programs?

2009-04-23T04:56:00.000-07:00

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.
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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.
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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!!!

Food Chaining Course Oak Brook, IL April 24 and 25th

2009-04-07T03:46:00.000-07:00

Hi All
Come and see us in Oak Brook, Illinois for the Food Chaining Course. Details available at www.cepauniversity.com.

Way to go, Jase!

2009-03-21T17:25:00.000-07:00

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!

When a Child Aspirates...Dealing with Silent Aspiration

2009-03-05T08:41:00.000-08:00

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.

What are the Differences between the Food Chaining Course and The What to Do and How When and Why To Do It Course

2009-02-27T12:36:00.000-08:00

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.

Infant Reflexes

2009-02-22T06:13:00.000-08:00

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.

General Tips for Feeding Preemies and Preemie Graduates

2009-02-22T05:55:00.000-08:00

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.

GER in Infants and Children

2009-02-20T12:26:00.000-08:00

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.

Classifying Complex Feeding Disorders

2009-02-20T12:23:00.001-08:00

"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.

Publications of Interest

2009-02-20T12:10:00.001-08:00

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.

2009-02-20T12:10:00.000-08:00

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.

Laura

2009-02-04T04:19:00.000-08:00

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.

New Courses

2009-02-03T04:35:00.000-08:00

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.

BDI Playhouse in Tinley Park...The Greatest Sensory Room I Have Ever Seen!

2009-01-20T03:45:00.000-08:00

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!!!

We will be in beautiful Santa Ana, California January 30 and 31, 2009

2009-01-11T16:47:00.000-08:00

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!

January 16 and 17th Course in Chicago Area

2009-01-02T18:01:00.000-08:00

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

Blessed

2008-12-16T02:57:00.000-08:00

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.

Control and Behavioral Feeding Therapy Programs

2008-12-16T01:55:00.000-08:00

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

Road Less Traveled Blog...Check It Out!

2008-12-14T04:56:00.000-08:00

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.

Food Chaining: Finding Success and Moving From There

2008-12-11T05:18:00.000-08:00

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.

Tales from Atlanta

2008-12-07T05:16:00.001-08:00

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!