Rethinking Treatment of Food Phobia and Fear of Swallowing in Children
My team shudders to hear it: “I’ve got an idea…” “I wonder what would happen if…” since those words are usually the prelude to me revamping one of our programs and “messing with a good thing”.
Kartini Clinic is — to my knowledge — the only pediatric eating disorder clinic in the nation with a protocolized treatment plan for swallowing phobia, aka food phobia, in children (see our section on Food Phobia as well as my previous blog on the subject). Under this treatment protocol we have had a 100% success rate in getting children with previous treatment failure to eat normally. And yet…
I wondered how we could improve on our good results by making them more family-friendly. Responding to the gauntlet thrown down to me by Laura Collins, to keep trying to push the envelope and include ever more parent involvement in our program, I decided to re-examine our treatment protocol for kids with food phobia.
How could we:
1. involve the parents more in their child’s recovery;
2. take the majority of our treatment out of the hospital;
3. make treatment shorter;
4. make treatment less expensive;
5. do away with the need for “behavioral incentives”;
6. and STILL get the 100% treatment success rate that we are used to?
To review the situation:
Food Phobia happens in children, often very young children, who experience an episode of choking and/or vomiting that leads to them subsequently refuse all solid food. In some cases they also refuse to swallow liquids, including their own saliva. This irrational and deeply held fear leads to weight loss and can lead to dehydration. It also causes significant psychological distress for the child as well for the parents. Begging, pleading, threatening, cajoling, or rewarding do not alter the course of this illness. Most patients who come to us have already been seen by some combination of their own doctor, a gastroenterologist, a speech therapist, a psychologist, a throat surgeon or an occupational therapist. In some cases this cascade of referrals has lead to a delay in resolution of the problem as long as six months! Imagine the fear and despair parents experience whose child has eaten either nothing or very little for that long? Some children who have not responded to treatment have even had a G-tube placed for long term feeds (a tube that goes through the abdominal skin directly into the stomach). Pretty draconian stuff.
Previously, Kartini Clinic's treatment protocol consisted of (a) hospitalization for placement of the NG tube (through the nose into the stomach, NOT a G-tube), (b) introduction of Zyprexa (Olanzepine) medication, (c) a “rest from trying to eat” for at least one week while the NG tube took care of all caloric needs, and finally (d) the introduction of food by nursing staff in the hospital. The next few weeks in the hospital usually resulted in improved food intake, but it almost always required a period of “behavioral incentives,” to push the child forward to daring complete meals. The most powerful (and most distressing) incentive was being able to see parents only if they ate all of each meal. You can imagine that a very difficult period would follow during which the parents could not visit their child; something we as pediatricians really hate to do. The distress of the child was hard on the parents, the child and our staff. But it worked.
But we decided to try to something different, something that replicated the results without the hardships.
The result is Kartini Clinic's new treatment protocol, which has proven unexpectedly successful to date and a delight to our families and our whole treatment team. Kids are still admitted to the hospital to have the NG tube placed and medication started. This allows us to make sure there will be no complications of re-feeding to deal with and allows us to teach the parents how to manage the naso-gastric feeds at night. Now the child is in the hospital for only a few days before being discharged to Kartini's Day Treatment Unit, drastically cutting expense of treatment. In the KDTU they spend the day with us, evenings and weekends at home (or in the Ronald McDonald House for those from outside Portland) with their parents. The first week in the KDTU, as in our previous treatment protocol, no food is offered; rather the child is encouraged to engage with the team and get to know everyone in order to feel comfortable and safe. During this first week or so the doctors adjust the medication up to where they think it needs to be and then, with “all the stars aligned”, to begin re-feeding, having the parents join us at the first possible moment. Parents know better than anyone what was “normal eating” for their own child before the illness struck. They also know their own child’s likes and dislikes. At the Kartini Clinic parents become partners in helping us do the re-training of the brain that is the focus of treatment in this disorder.
And our success rate? 100% so far: grateful and counting!
Great job parents!
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Hi, After reading your information about Food Phobia I am convinced that is what my daughter is dealing with. My daughter will be 9 years old on Tuesday. She is a really smart kid with lots of friends who loves to dance, play piano and do gymnastics.... And she loved to try all kinds of foods and ate very normally.
5 weeks ago on Friday, she was eating chips and cheese dip and drinking lemonade at a restaurant and she yelled out that she was choking. She became very afraid and afterward said she thought she was going to die. The next day she would not eat. She eventually tried some pizza and a sandwich and mini muffins, but would swish them around in the front of her mouth until they were mush and then try to swallow it. Most times she would spit it out in a napkin until she found that she could eat and be fine with yogurt. She eats only smooth yogurt, sometimes 7 in a day. She has tried and will eat pudding, mashed potatoes sometimes (smooth, not even pepper), ice cream, and Pediasure shakes. She will drink water, vitamin water, milk. We have been to see her pediatrician and we even tried to have her eat in the doctor's office and she refused to even try a tiny bite of foods she loves. We celebrated her birthday in Disney and she wouldn't eat her cupcake. She has also done a Barium swallow x ray which showed no damage or problem swallowing. Our pediatrician spoke with a psychologist at the practice who did say she believed it is a food phobia and recommended the book Worried No More by Aureen Pinto Wagner and for her to take 1cc of prozac everyday for 30 days. She said to fix Emily's plate at mealtime like I do for my son, but also offer yogurt and try not to talk about eating or meals or make a big deal about it. My daughter is very aware that something is wrong and seems worried all the time about the next meal, but does try to carry on like normal. She holds her saliva in her mouth until she can break away from what she is doing to secretly spit it out somewhere.
I wondered if you felt this was a food phobia and what your recommendation would be. I am not sure how much I should say to her about the issues she is having or if we should try not to talk about it all. We live in Charlottesville, VA near UVA. I wondered if there was someone here you could recommend as well.
My parents will be visiting Portland from TN the week of August 9th which happens to be Emily's first week back to school in 4th grade.
Jen,
What you are telling me sounds exactly like food phobia. I would follow the advice given you by your pediatrician and psychologist---- however, do not wait too long to act if it doesn't work. Do not, for example, accept weight loss. We have had children who have been allowed to "dwindle" for as long as a year. At that point, the anxiety is so entrenched that it can be more difficult (and take longer) to treat.
I am sorry I can't recommend anyone in your area. As incredible as it might sound, to my knowledge, we are the only center in the USA which has a protocol to treat food phobia as such, and which has a track record of doing so successfully.
Hang in there! Have you been to the parent support site called F.E.A.S.T. (www.aroundthedinnertable.org) you might find some moral support there.
Hello,
I'm trying to determine if my 4+year old son has a food phobia. Every meal is a battle with him. He is not picky when it comes to food types (he loves all of the food he is served and never complains that he does not like it), but he takes forever to eat. He chews one bite until everything in his mouth is mush. He can take at least 30 minutes (which is a good day) to eat a meal (even simple meals like a bowl of cereal, oatmeal, soup, etc.) or up to one hour to eat a meal.
Sometimes he will gag when asked to chew and swallow faster. He doesn't throw up during meals, but sometimes gags only when asked to eat faster.
We mentioned it to his pediatrician who explained he developed a bad habit and we just need to break it by having him stop eating when we are done eating. I wouldn't mind this but he is also on the small end (only 5 percentile in weight, but his pediatrician says he is fine based on BMI). So it is hard to implement the "you are done when we are done rule" because:
* He is so tiny and needs the extra calories (in my opinion)
* Given "enough" time, he will eat most of his food (because he likes the food, just can't eat fast enough).
He hasn't always been a slow eater (although it feels like it). It seems to have been a problem for the last 9-12 months. How do we go about determining if he has a situation that needs to be medically addressed? Or is this a control area for him where he feels like he can control the situation and therefore does? Meal times are such a battle and we are so frustrated. We live in Michigan and are looking for referrals.
Thanks!
I would not call this food phobia (FP) as FP has an abrupt onset and involves refusal to eat and, often, to drink as well.
I do not know who would see problems like this in your area.
In terms of what should you do, I think this would depend on your family culture and how his Dad and you feel about this slow eating (slow eating, long mealtimes are the norm in some cultures). Personally, I would be tempted to let him eat at his own pace, but not necessarily to "capture" you at the table with him. He's only four, this may well be a phase. But at any rate, do not battle with him since this is likely to make it worse (and more miserable for you). Either matter-of-factly remove his food after a time you feel has been sufficient, saying something like "I see you did the best you could at this dinner" and leave it at that, or accept his personal slow pace for now.
Hello,
I'm concerned with my 5 year old nephew health. He was a premature baby, his weight was 1 and a half pounds. He has always had eating problems, and he still is not tolerating solid food, which leaded to underweight problem. He been through mouth therapy, and swallowing therapy. Now he has a G-tube for about 8 months now. Still there is no improvement, he has only gained 4 pounds, and yet he still does not tolerate solid food. As a family we are all concerned, we do not know what to do next. We want the best outcome for him to have a normal life. Any advice will be grateful.
Premature babies can have feeding problems which are fundamentally different than the eating disorders described here on my blog (such as anorexia nervosa or food phobia). One of the distinguishing features to eating disorders is their discrete start after normal eating has already been established. What you are describing is a feeding problem that has existed from birth and which would be best addressed in a Feeding Clinic, such as most major universities have. I occasionally do evaluate children with eating problems that are likely to lie outside of our direct field, but as I do not know where you are located, Portland might be quite a ways to come just for an evaluation.
My daughter is asthmatic and we recently found out she has something called oral palatal syndrome along with a list of food, pollen, tree and grass allergies. She complains of difficulty breathing and feels as though her throat is getting tight. Physically she appears normal, oxygen levels at 100 percent etc. she has not outwards signs of anaphalaxic shock. Then after about 15 mins. she is fine. Our family doctor said she is fine and maybe some anxiety meds would help. Now she has developed a food phobia and will not eat. She is severly afraid to eat out. I can't get her to eat her favorite foods, not even ice cream. I took her to see a therapist but, that isnt much help. The therapist said she has anxiety, something I could have told her. The therapist didn't give us a plan just told us to follow up with our family doctor. I had to intervene and ask the therapist what the plan was, I had to give her some ideas so that could we give my daughter. I really don't want to go back to see this therapist what type of program do you recommend we are in Missouri. Thank you
I wish I could direct you to someone closer, but to my knowledge we have the only program with a medical protocol for dealing with this complex illness.
I have a 9 year old son that has been an extremely picky eater since he was a toddler. He is growing according to his pediatrician. I have come to my own conclusion that my son has 1) food phobias but it does not have to do with choking or fear of choking although he does vomit upon making him eat any food in does not want to eat or try. In my opinion, my son's are more related to food selectivity and food refusal and oppositional defiant disorder and/or control. Over time, we let him eat what he will eat (he tells us and we prepare it) to take the stress out of dinnertimes. Is there a clinic that I could take him to in the Chicagoland area that deals with this type of disorder?
Dear Kim -
I will let our medical director speak to your clinical concerns, but I would urge you to visit Aroundthedinnertable.org, the best online forum for parents we know of (full disclosure: Dr. O'Toole sits on its advisory panel) . This is a great resource for parents seeking help. Another good resource is NEDA's website (National Eating Disorders Association) which can supply you with a number of resouces in your area. But, as I am sure Dr. O'Toole will also stress, it is important to find a treatment facility or team that have specific experience with this condition. Not all eating disorder programs do.
Dear Kim, The condition you are describing is what is called "selective eating". It is not, in my opinion, related to food phobia. Selective eating is of long duration (typically from earliest childhood) and-- provided that the child is growing normally--is harmless. My experience has been that it runs in families (ask around your and your husband's family) and that it is not uncommonly seen in boys and men. Children with selective eating do not really outgrow it, although as adults they often learn to make some accommodation to it. I think it is important not to pathologize selective eating, but to help the child (and the relatives!) understand that it is a variant of normal. In Eating Disorders A Parents Guide By Rachel Bryant-Waugh and Bryan Lask (available on amazon.com) there is some useful discussion of this entity. I am not aware of any treatment centers, because the children are actually not ill and don't really need treatment as such.
Is there somewhere I can read more about this? I am curious about the role of the olanzapine -- is this to reduce anxiety or for some other reason? How long are the children on the olanzapine for?
The only thing I can suggest you may read is a small book by Drs Lask and Bryant-Waugh called Eating Disorders A Parents Guide (through amazon.com). There is not a lot on this subject. But stay tuned here!
The olanzepine is to reduce anxiety and to combat the "delusional belief" in a physical hindrance to swallowing. Once the child is eating normally, for them--- or as we say: "bite, chew, swallow" we wean them off over about 6 weeks.
What a wonderful approach for a truly frightening illness. Bravo Kartini! Yay families!
Some time ago I participated in treating children with autism who were selective eaters (sometimes to the point of malnutrition). If the child was medically stable, we provided treatment in either a clinic setting or the child's home. Parents were always a part of the treatment from the beginning and sometimes we did use parent access as the reinforcer for taking each bite of food. We used a protocol developed at Kennedy Krieger hospital and relied on research on feeding in the developmental disabilities literature. You've had such wonderful success with your program I thought you might want to look at some other resources.
Thank you, I would like to see other resources and have several questions:
1. when was this?
2. which resources are you referring to? What did you find especially helpful?
3. Was this in the Washington DC area?
4. How long did it take for the children to eat normally again?
The children we see with Food Phobia are overwhelmingly developmentally normal, but the work with autistic children would be interesting to look at.
This was about 15 years ago. I continue to work with individuals with ASD but not in the same context and so have not kept up with the feeding literature. The Kennedy Krieger feeding program can be found at www.kennedykrieger.org. Even though they serve individuals with disabilities, it does seem that there may be some overlap in protocols. Kennedy Krieger shared their protocol with us and we found it extremely helpful. A literature search using the keywords feeding, selective eating and autism may provide some up-to-date information. Typically, it took 3 days of intensive work with the child and family, fading the parents in as the ones doing the feeding over that time, until the child was eating what was presented. Of course, it took several months or longer before the child was eating completely normally (that is, feeding themselves a variety of food with utensils at the table using a leaner reinforcement schedule).
I just realized that your post referred to "selective eating" although your description of it seemed more like food phobia. "Selective eating" is a very different diagnosis, in general a condition that is harmless and does not lead to growth failure or malnutrition. Which we you referring to? Did I misunderstand?
I'm sorry I didn't make it clear that I was talking about food selectivity and food refusal. In my experience, the kids we saw did suffer from malnutrition and in some cases, failure to thrive. When I read your post, there appeared to be some overlap in treatment protocols and I thought I would recommend resources from a different field. I know it's difficult to keep up with developments in other fields that might inform what we do. Your blog is wonderful and I enjoy reading your posts.
I have a 7 y/o daughter who is of a normal disposition. She is smart and loving very creative with friends etc. However, after going through a battery of tests my wife and I have recently learned that she has a food/swallowing fobia. We just had the upper endoscopy done (@ Johns Hopkins) and learned all is normal. We've taken the approach of not making a big deal about it and have let her eat what she wants (this has been waxing and waning over 1.5 yrs). Now I'm tired of her only eating yogurt/pediasure with meals. I'm worried that the next phase means psych therapy and all that entails. Will my child ever be normal? I'm a nurse and I don't have a lot of confidence in psych therapy. I'm worried that this may lead to other issues. Please give me your thoughts, it would be most appreciated.
I am distressed for you that it has gone on for that long! I would suggest she needs treatment now, not later. I am only an expert in our own treatment protocol, which you know about if you have read my blogs. Later this year my book Give Food A Chance will be coming out with more detail about our treatment methods. I certainly wish you luck.
My son just turned 2 and has a history of cardiomyopathy. He had open heart surgery one year ago. Probably he was in pain and having heart attacks before he was correctly diagnosed with ALCAPA which was corrected. Doctors do not believe (for the most part) that his heart should be impacting his eating anymore at this time (although his heart is not completely normal and I think sometimes there is so much they don't know about baby hearts). My son wants to try everything and will eat a few bites of most things but then stops. He never acts sad or hungry and is happy just about all the time. He eats a total of 2 tbsp to a cup of food a day. and goes in spurts of being better or worse. we have been to every doctor to check out everything. He is gaining slowly. he drinks 27 calorie formula. He sometimes eats as if there is no issue swallowing large amounts of foods (like popcorn) at a time. Other times it takes him very long to chew and swallow or he chews and spits out. he is almost always done after a few bites...even if he acts excited about eating when he starts. We do not want a feeding tube and he is happy and developmentally at or above milestones other than size. speech therapist sees nothing wrong with his process of chewing swallowing. He is on periactin intermittently but it is not helping much anymore. Any feedback appreciated. We live in Chicago,
It sounds to me as if you are doing everything right, but in order to know whether or not you need further help, one would need to know the details of your son's growth: his birth weight, his heights and weights since then, both biological parents height and weight and a family history of any and all eating/food problems. Only then could a reasonable assessment be made, and obviously not via this forum. If you would like to speak to our intake coordinator about a possible visit or a phone consult, please call 503 249 8851. Best of luck.
- Dr. O'Toole
Dr. O'Toole,
I just spoke to Steve and will complete the consultation form he is sending me. My little one, Jerry, just got over hand, foot, mouth disease and of course we are having a set back. He is 25 months and 22 pounds (lost and regained since illness). I just don't know how he can be so happy and active with no food going in and supposedly being so underweight. My husband and I are both average to small in height and weight. He is at least getting closer to the curve a big jump since December. I guess what I struggle with daily is not knowing if it is ok to applaud with with his eating or even play little games "don't eat this bite...." Of course then he wants to but I have a feeling that it is not a good way to get the food in. Sometimes I can feed him some while he is playing or he will come for a bite if he is free, not in his chair. It sounds like you do amazing work and I will spread the word to others I know who have young children with eating disorders.
I look forward to talking to you about Jerry. Be sure and send all growth charts and medical visits so that I may review them prior to our conversation.