Posts Tagged ‘GFCF’

Hi and welcome to What Works Wednesdays where we share a success story from one of our clinical cases. All names have been changed to preserve the privacy of the child and family. Our intent is to show readers how successful ABA can be. Today’s story is about a young man we call “Dennis”.

Dennis came to us just slightly before his third birthday. He carried a diagnosis of autism. Like many of our children, he also had a history of reflux. His reflux was so bad that his parents reported having to place a plastic covering on the floor under his crib to protect the flooring.

Dennis was non-verbal but he had no problem making his needs known. One way that he communicated his wants and needs was by vomiting. Initially, when a non-preferred food was presented to him, he vomited until it was removed. Over time, he began to control what his Mommy ate too. If he saw her eating something he didn’t like, he vomited. By the time he got to us, he had whittled his diet down to only 3 foods: a certain brand of potato chips, peanut butter, and a beverage. His poor Mom couldn’t eat in front of him and was limited to consuming Coca Cola only in his presence. Can you even try to imagine the family stress in that house?

Readers should know that Dennis was the most adorable picky eater. His chubby cheeks were just ripe for the squeezing. His toddler hands and feet were precious. He was the kind of child that you just want to pick up and hug and kiss over and over again. With a child that cute, you know behavioral feeding therapy is going to be a challenge! It is really hard to be firm with a cutie-pie.

Because of the seriousness of the behavior and the extreme food selectivity, we asked that the parents have a complete medical work up prior to starting feeding therapy. Dennis came back clean as a whistle–he had no major issues other than the reflux.

On the first day of feeding therapy, we realized that we needed help. We rushed out to the nearest store to purchase protective gear–plastic aprons. Dennis could vomit without any effort at all and our clothes were doomed without protection. (Dennis is the worst case of vomiting we have seen in our practice to date.) In the first three sessions alone, he vomited 13 times when a total of 30 bites had been presented! When Dennis vomited, we simply cleaned up the area and re-presented a clean but identical bite of food. Dennis tried to use gagging to replace vomiting. When he gagged, we simply closed his mouth by gently pressing his chin up.

Dennis did not give up his preferences willingly. He fought us for the first two days. In addition to vomiting and gagging, he used head turns, crying, spoon batting, and other disruptive behaviors to avoid new foods. We ultimately used physical prompting to encourage him to open his mouth and take a bite. Once he accepted the bite, he discovered that it didn’t taste quite so bad. Keep in mind that Dennis was also hungry for each session. His parents did not feed him before or after therapy so if he didn’t eat with us, he didn’t eat again until the next therapy session a few hours later.

Over time, he began to fight less and less and he began accepting bites willingly. By the third day of treatment (9 sessions) Dennis had stopped vomiting.  Across the last three sessions of treatment, Dennis gagged only 2 times out of 142 bites of food and he had no vomits.

On the fourth day of treatment, we transitioned Dennis’ parents in to replace the feeding therapists. On this day, Dennis had begun to feed himself and his parents were there to make sure that his bites were not too big. His parents also reminded him to take a bite if he slowed down or looked as if he might be trying to avoid a food. It was also on this day that we taught Dennis how to eat cake for his upcoming birthday party. We all cried tears of joy to see him willingly scoop up gluten-free (GF) and dairy/casein-free birthday (CF) cake (and yes, GFCF cake tastes delicious)!

Dennis was discharged after only 12 sessions of treatment (4 days)! A few days later, his parents sent us pictures from his 3rd birthday party where he was happily eating his real birthday cake.

This success story did not come without extremely hard work by the parents. It was emotionally draining for them to see their child put up such a fight to avoid foods. It is not easy watching your baby vomit repeatedly at the sight of new/non-preferred foods. It is not easy hearing him cry repeatedly for an entire session. But they stuck with it. They stood their ground and they supported our treatment by not feeding him between meals and by requiring him to participate in therapy 3 times each day despite his tears. Congratulations on your success! The hard work paid off!

We would love to hear from readers. Have any of you worked with children who vomit? Parents, are any of your children vomiting to avoid foods? Parents, teachers, and behavior analysts, would you be able to stick with it like the parents and the therapists did?

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Today’s post was developed in response to an article that originally appeared in the Austin American Statesman. You may read it here. You may read the original research article discussed in the paper here. This post is the original opinion letter that we sent to the editor at the Statesman. We were ultimately asked to shorten the letter and it appeared as a simple Letter to the Editor.

Ms. Roser’s recent article highlighting the Malloy and colleagues’ new study regarding gluten- and casein-free diets for children with autism spectrum disorders (ASD) puts special diets in the spotlight once again. Special diets are not new and they are not solely for children with ASD. In fact, special diets are necessary for many people.

For example, people diagnosed with phenylketonuria (PKU) require a highly specialized diet to prevent the development of mental retardation. PKU is a genetic condition wherein individuals lack an enzyme to digest certain amino acids. This is such a serious issue that every child in this country is screened for PKU via a heel prick at birth. Those who test positive during the test are required to follow a life-long reduced-protein diet.

A second example of a condition requiring a specialized diet is celiac disease. Those affected are allergic to gluten, a protein found in grains such as wheat and barley, and they must refrain from consuming gluten throughout their lifetime. Consumption of gluten can have many harmful side effects including anemia, osteoporosis, and intestinal cancers.

Finally, individuals with food allergies must also follow specialized diets. For those who are allergic to nuts, exposure to them may be deadly. Such was the case when a young woman with peanut allergies died after kissing her boyfriend shortly after he ate a peanut-butter-and-jelly sandwich. The most common food allergies for children include milk, egg, soy, wheat, peanut, tree nut, and seafood. If any of us had to give up these foods, particularly without effective guidance, we would feel restricted! Unfortunately, for people with food allergies, food restriction is the only way to prevent negative side effects.

Unfortunately, what Ms. Roser, as well as Malloy and colleagues, failed to mention in their writings was the fact that children with ASD often go on specialized diets because of gastrointestinal (GI), nutrition, and/or immune disorders, not because of the condition or diagnosis of ASD. The GI disorders that children with ASD often experience may be related to food allergies or intolerances, autoimmune conditions, or other environmental variables. Among physicians and psychologists who regularly treat individuals with autism, there is an understanding that such individuals may experience gastrointestinal disorders and lack the communication skills to express their discomfort. In response to this growing recognition, a team of 27 medical doctors and doctoral-level psychologists published a consensus report in the journal Pediatrics (Buie et al., 1/4/2010)”. The team stressed the importance of completing a proper and thorough work-up in determining the cause of GI symptoms for children with ASD. Instead of discussing the GFCF diet as a medical treatment for children with ASD, Ms. Roser, as well as Malloy and colleagues, imply that the specialized diets for children with ASD are designed to “normalize autism.” In fact, on page 4 of the Malloy paper, the authors actually state that they included only studies that examined “the amelioration of ASD symptoms.” It is no wonder their review of 14 studies found only 4 studies with positive effects from the diet; the authors excluded all the studies that examined changes in GI functioning!

To those parents of children with ASD, heed not the advice of the researchers who merely summarized a small set of studies. Instead, if your child displays symptoms of GI disorders (e.g., reflux, diarrhea, constipation, stomach distension, etc.) or other health concerns, schedule an appointment with a knowledgeable clinician for appropriate treatment of symptoms.

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Hi and welcome to “What Works Wednesdays” where we share a success story from one of our clinical cases. All names have been changed to preserve the privacy of the child and family. Our intent is to show readers how successful ABA can be.

Today’s case highlights the struggles of a little peanut who reminded us of a cherub–hence the name Little Cherub. She was angelic, beautiful, and gentle (except when you asked her to eat). She was fair-skinned, fair-haired, and fair-tempered (unless you asked her to take a bite).

Little Cherub was a twin who developed normally until she was 18 months old. She once spoke 30 words–until she regressed in to autism. Then one day, the words started disappearing one by one. What a horrible nightmare for families to live. Our sympathy goes out to each and every one of you who have lived (or who are living that nightmare).

Not only did Little Cherub lose her words and her desire to live in our world, she lost all of her eating skills. She no longer loved salmon. She no longer enjoyed cantaloupe. In fact, by the time we got our hands on her, she had whittled herself down to just two foods. Yes, you heard us correctly–just two foods. Can you imagine the stress for her family? (yes, some of you may be living that stress right now.) She loved pretzels and she loved peanut butter. She drank her almond milk from a bottle and she refused to drink it from a cup (although she could drink water from a cup).

As if her case wasn’t hard enough, Little Cherub had been diagnosed recently with celiac. Celiac is a condition when a person cannot digest the protein found in gluten. If you are uninformed on this topic, you should know that gluten is found in almost every yummy food: bread, pasta, crackers, cookies, batter-fried food, and anything else with flour. Living a gluten-free (or GF) lifestyle is not that hard but it can certainly complicate matters–particularly when you only eat 2 foods.

Little Cherub’s parents agreed to have us come in to their home for a week of therapy. During that time, Little Cherub stayed home from school and focused on eating and toileting. Yes, we sought to address both eating and toileting because we have found in our practice, that children respond well when they are challenged. So, with that, we started both treatments on the same day.

The first day started with Little Cherub putting on her big girl panties. She had the cutest little panties–Hello Kitty and Cinderella. She was not particularly interested in her new panties though. We put her on the toilet and she didn’t produce. We made the mistake of putting her clothes on and turning our backs. Bam! She wet herself. We quickly rushed her to the potty and told her that pee goes in the potty. She did not produce since she had already peed it all out. So she got dressed and washed her hands. Oh yes, toilet training is a great time to work on those self-help skills because you get to practice them over and over and over.

Then she proceeded straight to breakfast. Little Cherub was somewhat confused as to why she wasn’t having peanut butter. She was angry when she found out that eggs were on the menu instead. During breakfast we tried to shape up a self-feeding response. We wanted her to pick up the spoon, touch it to her lips and put it back down. In return, she could watch her favorite movie, The Backyardigans.

We also threw away the bottles. If she wanted her almond milk, she would have to drink it out of a cup. She fought this for at least two days straight. It was almost as if the cup had cooties—except she drank water out of an identical cup. It made no sense to us either. We are certain that when she starts talking one day, she will tell us. None the less, the first meal was not easy but she soon figured it out. Breakfast lasted over an hour.

Next it was time to potty again. We had learned from her teachers that Little Cherub could hold it all day so we did not need to stop breakfast to potty. She did not produce after breakfast either. This time we kept our eyes on her while we waited for lunch. During this time she asked for pretzels and peanut butter. We simply told her that breakfast was over and that lunch would be soon. Then the crying ensued. She was clearly unhappy about these new rules.

We finally got her to pee on the potty after what seemed like hours (oh yeah, it really was hours). We sprinkled warm water down there and she made the connection. We gave her GFCF pretzels as a treat. She was happy. She managed to pee on the potty once each day and then she would have a soaker over night. This is pretty common when children are rigid and have already learned to hold it. Eventually, she will figure out that the only way she is going to get pretzels is to pee on the potty. By the time we left after 6 days (thanks to a snow storm that kept us longer), she had peed on the potty at least once each day and sometimes twice depending on her liquid consumption.

The feeding was turning out to be much more difficult. In fact, Little Cherub proved to be the toughest case we have had to date (we reserve the right to change that–though we hope to never meet anyone more difficult). As we said, on the first day, she was willingly picking up the utensil and touching it to her mouth. On the second day, she would willingly eat a food if it was mixed with the peanut butter. We were also successful at putting some food on a chip–a once favored food. However, after two days, she was still not interested in eating food that was not accompanied with another preferred food. So, on day 3, we got tough. We no longer allowed mixing foods. She needed to eat it plain. She put up an awful fight. You would not believe us even if you saw it on video. For a tiny little peanut, Little Cherub was fierce. She fought us for the first meal on Day 3 and then it was as if nothing had happened. She came to lunch ready to eat.

Thus, lunch and dinner on Day 3 were great. She was eating all the foods (we ask parents to bring 4 NEW foods to each meal–protein, fruit, vegetable, and starch). She was feeding herself all the foods. So, at dinner, Mommy took over with us coaching. She tried to fight it but she soon realized that Mommy was no longer playing the old way–she meant business. On the 4th day, Daddy did breakfast. It is funny because Little Cherub thinks she can convert people back to her world. That is until she realizes that they have been trained. No more peanut butter, no more pretzels. Uh oh.

During breakfast we discovered that Little Cherub does not like eggs. She fought and fought and eventually self-fed the eggs. (Sadly, even after 6 days, she was still not thrilled with eggs. Her parents will continue presenting eggs for a few more weeks before deciding if they are simply non-preferred).

Next, we were off to school. It is important to generalize these skills to new people. Remember, Little Cherub put up a fight for Mommy and then Daddy. You know she is going to fight her teachers. We arrived at school during snack. Little Cherub tried to eat her friends’ snacks! What a pleasant surprise! However, due to her allergies, she cannot eat her friends’ food. We started off the lunch session and after a few bites, we transitioned in her assistant teacher. Wouldn’t you know, Little Cherub decided to try out the fight again. Quickly she realized that all the teaching staff were “in on it” so she settled down and ate her blueberries, coconut milk yogurt, and chicken soup with carrots and chunks of chicken.

When the snow cleared and we could travel, we said our good byes. We arrived home to the most brilliant email. Little Cherub ate (and I quote you from Dad’s email), “Steak sautéed in onions, home fry style potatoes and onions, peas, and strawberry for dinner. She loved the steak and potato and asked for several helpings!” We wanted to know if she ate them willingly or if she put up a fight. To this, Dad replied, “she grabbed that steak like a hungry NFL lineman. I started with a few small pieces and she probably ate about 2 oz in total. I had to push with the potato for the first bite but that was her second favorite food of the meal”

Let’s pause to cheer for our Little Lineman. Way to go Little Cherub! Hats off to your Mom, Dad, Grandpa, Mimi, and wonderful teachers. You have the best army possible fighting for you. Mom and Dad, it was a wonderful journey. Thanks for taking us along for the ride.

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Hi and welcome to “What Works Wednesdays” where we share a success story from one of our clinical cases. All names have been changed to preserve the privacy of the child and family. Our intent is to show readers how successful ABA can be.

We are often asked,”At what age should we begin behavioral feeding therapy?” Our reply is a consistent one: sooner is better than later. However, please do not take that to mean that if your child is older, that behavioral feeding therapy will not work for him/her. We have helped several children over the age of 10 learn to eat new foods and overcome their picky eating. So, today, we thought we would highlight the positive outcomes of one such case.

We want you to meet a teenager named “Alex”. Alex was much like any other teen. He wanted to get his driver’s license. He was tall and lanky and he liked typical teen food such as pizza and he also over-salted all of his food. On top of being a teenager, he was also diagnosed with autism spectrum disorder (ASD) and he suffered from a long history of gastrointestinal (GI) disease.

His mother contacted us because she wanted him to learn how to follow the gluten-free, casein-free (GFCF) diet that was prescribed as part of the treatment for his GI condition. We were happy to teach Alex how to eat. It worked to our advantage that Alex was also studying nutrition at school. He was learning about the food groups and how it is important to eat a healthy, balanced diet.

As part of the planning process, we developed a social story for Alex so that he could better understand the importance of learning to eat a healthy, balanced GFCF diet. In the social story, we showed Alex how each type of food helped his body and we tied it back to his lessons in nutrition at school. For example, protein helps build big muscles. We used this image:

We ended the social story by explaining to Alex that learning to eat healthy will also help his brain so that he could study for his driver’s test. And finally, we added the winning argument that girls would more likely be interested in guys that eat right and have healthy brains and bodies.

We would be lying if we said that behavioral feeding therapy is easy. For 90% or more of our clients, the first day or two of therapy is hard. The children are mad because they want to eat the foods they are comfortable with. They are scared of new foods and when they are asked to try new foods, it causes reactions. Most children use their words to explain their feelings while others use their behaviors.

After Alex got over his difficult days, he took off. We attribute much of his success to his mother. She used games on the iPad as an incentive to eating. She told him, “If you eat your _____, I will buy you _______ for your iPad.” Most games on the iPad can be purchased for under $1.00 so this was a cheap incentive. Additionally, this helped associate food with something positive. Before long, Alex was developing new favorite foods such as rice and mixed vegetables.

Teaching teens to make healthy food choices independently is important because we cannot be with them at every meal. If we teach them the skills to choose a food from each food group, we increase the likelihood that they will make good choices. Teaching teens that healthy food also tastes good, is another  important step. It only took 4 days for Alex to learn to try and like new, healthy foods. I wonder how he is doing on that driver’s license test?

Another mom talks about her child’s success here (and we’re not just highlighting this case because she thinks we are awesome–they both did a great job in overcoming this difficult issue).

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Hi and welcome to “What Works Wednesdays” where we share a success story from one of our clinical cases. All names have been changed to preserve the privacy of the child and family. Our intent is to show readers how successful ABA can be.

Today we want to introduce you to Jack. Jack was an adorable little guy about 6 years old. When we say he was little, we mean it. He did not even register on the weight chart for children his age. That means that 99% of all children his age weighed more than he did. Jack did, however, love Dora more than any other child we have met! He loved Dora so much that he was willing to do anything to get more Dora, especially after his mother took Dora videos away for a lifetime an entire week while preparing for feeding therapy.

Jack came to us because his mother was concerned about his height and weight. He showed signs of extreme food selectivity. He loved chocolate chip cookies, chips, and pepperoni. He was not interested in eating too much else. Jack also had food allergies. He was intolerant to gluten and dairy/casein which meant that his mother had to make special cookies for him to eat.

Jack received feeding therapy from Missy in 2007 while she was employed at CARD. Jack’s story is interesting because if it were not for him and his mother, we would have never developed our short-term, intensive feeding program that is so successful today. You see, Jack’s mother lived over an hour away from the office where feeding therapy was provided. She could not fathom the thought of driving back and forth for therapy each week for up to 6 months. So she challenged Missy. She said,

“Missy, you told me that intensive ABA is better for my child when it is provided at higher frequencies. Would the same thing hold true for feeding therapy? You told me feeding therapy is ABA to address feeding? So why wouldn’t intensity matter?”

So, thanks to Jack’s mom, we thought outside of the box to develop a model that works. Our sessions have changed a great deal since then, but the basic format remains. We started with 3 sessions each day; one session for each meal of the day. We also started using a simple shaping strategy. In behavior analysis, shaping is reinforcing successive approximations of the desired behavior. Initially, we didn’t ask Jack to eat the bite, we simply wanted him to pick it up the bite and touch it to his lips.

Sweet little Jack was, quite honestly, not happy about any of it. In fact, he refused to eat pepperoni and chips (his favorites!) for Missy. But Dora, oh that little Dora talked him in to it. For just 30 seconds of Dora, Jack decided that he would try the food. You see, Jack had not seen Dora for over a week (Thank you Mom!!!). This made Dora more appealing to Jack. So it did not take long for Jack to realize that the only way he was going to get Dora was to try it our way. Soon, Jack warmed to the idea of trying new foods, not just the chips and pepperoni slices.

Jack was funny in other ways too. I think the best part of the feeding therapy was when he picked up the bite, ate it, and then popped Missy on the mouth as if to say “There! That’s for you making me eat this yucky food!”

Jack went on to make great strides. He met the criteria for graduation in 5 days. On the 5th day, he was eating foods while his mother supervised. He tried to go back to his old ways but his Mom was too smart for that. She had observed every single session. She knew he could eat the new foods so she dug her heels in. She told him that he could not have Dora until he ate his food.

It is important for readers to know that ALL children, regardless of age, ability, or trait, have battles over food. When given the choice, many children would choose processed foods such as chips, crackers, and fast food, over health foods such as whole fruits, vegetables, grains, and proteins. So, even after feeding therapy is over for the picky eater or selective eater, work will still be required from time to time. Does that mean that former picky eaters should be denied access to tasty processed foods? No, not at all. The answer for follow-up to feeding therapy is moderation. Once the intensity of feeding therapy is over, the process of moderation begins. It is fine to allow your child to have chips. However, chips should be available 1-3 times per week rather than 1-3 times per day.

Thank you Jack and thanks to your mom for pushing us (and you) to new heights–literally (Now, Jack registers on the height and weight chart for children his age!)

Happy Eating!

P.S. Now that back pack song is stuck in my head!I will forever associate that song with you, Jack.

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