Talking to a mother whose son has just entered our Food Phobia treatment program I realized that I may not have done a very good job stating clearly what our “recipe” for success with this illness has been.  What can a parent expect?  What can a child look forward to?  What if a provider is forced to treat a child with food phobia in an outlying hospital; how might they proceed?

First, a bit about the diagnosis. Food phobia is the term Kartini Clinic uses for the sudden onset of acute food refusal in children. It’s also sometimes referred to as “functional dysphagia” or “psychotic food refusal.” It’s characterized by the sudden onset of refusal swallow any food or liquids, usually explained as a fear of choking or vomiting.  It is not characterized by the slow or insidious onset that characterizes anorexia nervosa, and is often preceded by a choking episode (either experienced or observed) or an illness with vomiting. Eating – prior to the event of choking or vomiting – is normal.  There is no body dysmorphism and no fear of getting fat. Primarily seen in younger children, food phobia was first described as such by Bryan Lask (pediatric psychiatrist) and Rachel Bryant-Waugh (pediatric psychologist) in the early 1990’s as a result of their work at Great Ormond Street Children’s Hospital in London, England. 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 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. At Kartini Clinic we have developed a protocol for treating children with this condition which has been highly successful in extinguishing symptoms. I call this our “recipe” and I will try to summarize the high points below:

1. Treatment is done in the hospital setting only.

2. First, a nasogastric tube is placed (not optional!).

3. No food is offered once the tube is in place; sips of water can be taken if the child prefers, although many kids with FP will not swallow water (or anything else, including their own saliva).

4. The child is kept hydrated through the NG  tube and all nutrition is given through the NG tube in the form of a 1.5 kcal/ml liquid supplement

5. The child is started on dissolvable oral Olanzapine (again not optional; won’t work without it, in our experience) beginning at 2.5 mg at bedtime for two days then increased to 5.0 mg at bedtime for three days then moved to 7.5 mg at bedtime.  This is the “magic dose”, even in young children.

6. Now the child attends hospital school, plays with parents and siblings, does homework and generally just relaxes and learns to trust the team.

7. Once “all the stars are aligned”, meaning: any lost weight is restored (or mostly so), the Olanzapine is at 7.5 mg, and the child is relaxed and learns that they will not be punished, we begin to ask what their favorite food is. We do not start with soft food.  Would they like to try and eat?  We spend a lot of time reassuring them that we as “their doctors” are in charge, and they don’t need to be afraid.

8. Now we start with small bites interspersed with lots of praise and cheers, gradually progressing to more normal-sized bites.  Bite, chew, swallow: we’re there! We pull the NG tube; we offer their favorites; we praise and cheer.

9. OK, but what if they are too fearful to start bite, chew, swallow? Starting is the critical part.  At this point we may have to do something we all find very, very difficult: behavioral intervention.  And by this I mean motivating the child to eat by allowing the parents to visit only after the child has swallowed some bites.  We have tried to use all the other “carrots” that you can imagine (TV time, school, books, music, iPod, etc., etc.) Alas, nothing seems to work except the “nuclear option”, and we never do it without absolute parental buy-in.  If the parents are reluctant to do this, we wait until they are ready.  The stakes are high, as the parents of children with food phobia can tell you.  Were they not so high, we would not dream of this intervention, as we normally never separate parents and children (and it’s important to remember these kids do not have anorexia nervosa). Usually there are a few tearful days (and/or angry ones!) and then they begin to eat.

10. When the child is able to bite, chew, swallow we are home free.  The biological drive to eat seems to kick in once they realize they won’t choke on their favorite foods.  Some kids are so thrilled to be able to eat again they eat everything in sight. No one minds, I assure you!

11. Two points to follow-up: Olanzapine will be continued at 7.5 mg for another week at home, then moved to 5.0 mg for two weeks then to 2.5 mg for two additional weeks, then stopped entirely.  The good — make that excellent — news is that, once the symptoms extinguish, they seem to stay gone and not reoccur. In fact, unlike with other eating disorder diagnoses, in the cases of food phobia we use the word “cured” with some confidence.

So, there it is, our recipe, also known as Kartini Clinic’s treatment protocol for food phobia.