Food Phobia of Childhood: a "new" eating disorder
By Julie K. O'Toole MD, MPH
I have decided occasionally to write about topics that may be of more interest to practicing physicians and other providers confronted with difficult or unusual cases related to disordered eating. This is one of those topics.
Food phobia of childhood, primarily seen in pre- or early pubertal children, was first described as such by Bryan Lask (pediatric psychiatrist) and Rachel Bryant-Waugh (psychologist) in the early 1990’s as a result of their work at Great Ormond Street Children’s Hospital in London. To my knowledge, with the exception of one article reporting work with a single young boy, food phobia has not been discussed as an entity in the American pediatric literature except under the general title “dysphagia” where it is likely to come to the attention primarily of pediatric gastroenterologists and otolaryngologists. In the adult literature it is usually referred to as “choking phobia”. More recently Dr. Lask has chosen to refer to it again as “functional dysphagia,” although we at the Kartini Clinic for Disordered Eating prefer the more intuitive “food phobia.” In our experience, pediatricians report they are often at a loss about what to do with these challenging patients. We are grateful to Drs. Lask and Bryant-Waugh for calling attention to this condition. Click here for the full article.
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I believe my 11 year old son is suffering from this food phobia. Less than a month ago he was with is father on visitation and he swallowed a piece of a Popsicle stick. That in itself was an ordeal but now I can barely get him to eat anything at all. Despite all the encouragement, and explaining that his health could really deteriorate if he doesn't he still just "can't do it." He tries as he knows he needs the nourishment but most of it gets spit out into a separate dish. He'll drink his V-8 juices, and his breakfast essentials drink but getting him to eat anything solid has been right trying. Today he's told me he doesn't want to die. He's only been back home with me for a week and half and he's lost over 5 pounds. We have an appointment with our family doctor on Wednesday, and his nurse suggested a dietitian.
Do you know of anywhere in the United States particularly in Minnesota that treats such cases?
I'm afraid I do not know of any place else that specifically treats food phobia. Even among eating disorder doctors I do not hear it discussed. As far as I can tell, Kartini Clinic is the only place in the US with an experienced protocol for treatment. If anyone else knows differently please let us know.
Dr Julie O'Toole
Most of what I've just read hits home. My son hasn't eat anything solid in over 4 weeks now. He will drink milk and we have been puting Ensure in his milk to help supplement him. He is 5 yrs old and has lost apx. 4 pounds thus far. He got choked while eating dinner and hasn't eat since. He has been to 5 different doctors at this point and they are all at a lose. One doctor called us back and has been working with him but I fear that her approach is going to take to long. She only sees him twice a week and at this rate it may be a month or more before a real breakthrough. We need help!!!
Please give us a call at 503 249 8851 and ask for our intake coordinator. We can help you and a 5 year old should not have to wait for effective help. 4 pounds is a lot when you are just a little boy!
We as parents very recently experienced a food phobia nightmare which is now becoming a success story for our 9 year old son at the Kartini Clinic. We are forever indebted to Dr. Julie O'Toole, Dr. Nagmeh Moshtael and their staff for saving his life. On the F.E.A.S.T. forum website, we just read through the fear of choking thread and recognized much of the same fear and confusion experienced with our son. We won't retell the whole nightmare here, but in a nutshell he had a sudden onset of food phobia after having a strep infection. Of course, the biggest problem was that we didn't know what we were dealing with and had no idea where to find help. We were frantically searching for information about the overt symptoms (intense fear of choking, refusing to swallow food, and delusional fears), but found no helpful information. Then our son began compulsively spitting as he was then afraid to swallow his own saliva. This led my husband James to the food phobia case studies on Kartini Clinic's web site: http://www.kartiniclinic.com/Functional_Dysphagia
After reading the first case study, he thought Oh My God I found it! We were elated to discover that there were clinicians with experience treating it. Then the real battle began: overcoming our own fear of having to force this sweet young child to be admitted for inpatient treatment. James had numerous conversations with the intake coordinator at Kartini, and he knows that he taxed his patience, but we still could not summon up enough courage to schedule an appointment (knowing that he would certainly be admitted for inpatient treatment the same day). Several more days passed as we agonized over this decision and then we reached the point of no return. Our son began refusing all fluids. Hospitalization was now mandatory. We went to his pediatrician who had also been in contact with Dr. O'Toole. His pediatrician immediately admitted him to our local hospital for IV fluids and referred us to the Kartini Clinic the following day (June 11).
Fast forward to today (July 31): our son just had an outpatient appointment at Kartini and is surprising all of us with his rapid recovery. He is happy and thriving again and is nearly back to his pre-food phobia weight. It's almost like this was all just a bad dream, except that we woke up with a meal plan that provides the additional structure and predictablity that allows him to truly thrive.
We offer this narrative for two important reasons. The first is that it is extremely difficult to locate good information about food phobia. We feel very fortunate to have basically stumbled upon Kartini's web site. God only knows where we'd be otherwise. During all of James searching he never got a hit from any other forums, including the F.E.A.S.T forum. As we are now hearing and seeing, there are lots of parents out there looking for help and not finding it. They feel as we did, helpless, desperate and so alone, willing to do anything to save their child's life. How do we lead them to places like this? How does one bait the search engines with keywords? In James case, "spitting" was the key word.
The second, more important, reason for this post is that parents of children with food phobia need to understand that it can be successfully treated. We are far from being experts on this topic, but it sure seems like food phobia should be treated emergently before you end up in our situation: with a child who won't eat or drink anything. Putting your child in the hospital isn't fun, your pediatrician may disagree, and you may agonize over the decision for a variety of reasons, but you need to find a way to summon up the courage to get the right treatment right now. Do not wait. Your child is depending on you to make this decision.
The usual caveats apply: just our humble opinion and your experiences may vary. Thank you Kartini Clinic.
James and Kelley
It is we who are humbled by the dedication of parents to their child's healing.
--Dr OT
Is food phobia a common issue for children? I think my son has it and as a first time parent I am confused and don't know what to do. I am thinking to check few eating disorder treatment programs, I need a solution to this and I would appreciate any advise. Thanks!
Before you decide whether or not your son has food phobia, remember that the onset is sudden. Children who have always experienced some difficulty eating or who have always been intensely picky do not have food phobia but rather what we call selective eating, which is much more common.
Thank you so much for posting an article like this. There are many new disorders that children are being diagnosed with. Oppositional Defiance Disorder comes to mind as one of those "new" disorders. Do you have any experience with it?
Editor's note: A link to another web site was removed from this post because it was of a commercial nature. We will not post promotional links on this site. Thank you.
Dear Anon,
I am familiar with this term, but as it is not an eating disorder, it is not something we deal with directly at Kartini Clinic.
We are experiencing this with our daughter at this very moment. Nobody here knows what to do with her. We just spent 7 days in the pediatric hospital. We were discharged with an ng tube for feeding and really no other directions. We are at our witts end! We have an appointment with our developmental pediatrician tomorrow. I plan to take this article with me. I cannot believe how the senarios described here mimic our experience.
A few weeks ago our daughter started complaining that things were getting stuck in her throat. I even took her for a barium swallow study. Nothing abnormal showed up.
Last week she started refusing to eat or drink ANYTHING and has also stopped talking. She also will not swallow her own saliva.
She is 12 years old. She is autistic and has anxiety. She was on 50 mg of Zoloft, but while in the hospital, she was switched to Lexapro. The thought was that the Zoloft wasn't helping. Now that I have read your article, I am wondering what to do now. Nobody here in South Carolina seems to know anything about this.
Have you got any ideas?
Thank you,
I am sorry to hear about your experience. If her diagnosis is indeed food phobia, she is not on the right class of medication (see article above). In my opinion, discharging her on an NG tube to parents' care seems unlikely to do much except increase her and your anxiety. The in-hospital treatment of Food Phobia (functional dysphagia) takes time. 7 days would rarely be long enough. But it not only takes time, it takes an experienced staff to deal with this diagnosis. I wish I could offer you something else besides just our help, but that is what we could offer. I am unaware of any team near S. Carolina with experience.
Julie O'Toole
Great work, keep it up. I love returning back to this site and reading the quality content you always have on offer.
Appreciate the vote of confidence. I would be happy to entertain writing about topics of interest to parents/ other providers should they be requested here. -Julie O'Toole