Treating food phobia is hard. Sometimes it is so hard, we almost resolve to stop doing it. But then we get a call about a young child whose parents are desperate, whose efforts at treatment have failed. And we resolve to do it all over again.

Why is it so hard? As I have written in previous blog posts, the treatment of food phobia (aka functional dysphagia, or an acute refusal to swallow) is entirely different from treatment of anorexia nervosa. With food phobia we actually use the word “cure.” Once effectively treated, the condition doesn’t seem to return.

That’s the good news.

And Kartini Clinic’s treatment of food phobia is driven by an established protocol (developed here, by our staff, and to our knowledge still the only one in the country), so clinical decision making is much easier and more predictable. That’s also good news, for families and providers alike. To date we have not experienced a single treatment failure in any patient whose parents have stood the course.

Now that’s the very best news, of course, but it also has a downside. How so, you may ask? The downside is it sets the bar high, extremely high, and in so doing creates an anxiety of failure in our team of providers. Every time a new patient comes in we look at each other in dread: will this be the one we can’t help? Knowing that the course of treatment can be frustrating and can go through periods where it seems ineffective, one of us — usually me — repeats our mantra “the hardest thing about treating food phobia is (providers) keeping the faith.”

Occasionally we get lucky and treatment is relatively “easy.” The parents are anxious, but not too anxious, the child has no other behavioral or psychiatric/psychological issues, the weather is good….. you know what I mean. Oh, but then again sometimes it’s hard.

All the stars must be lined up for success with a child terrified to swallow: an n.g. tube must have been placed and all previous weight loss regained; the brain must have been re-fed; Zydis (Olanzapine) must be at 7.5 mg/day, having started at 2.5 mg; and the child must be confident they will not be forced to eat, humiliated or punished. They can’t be scared of us. All of this takes about a week, sometimes longer. Parents’ role is to play with the child, to refuse to talk about food, to relax together (in a hospital? with a tube in your child’s nose? are you kidding me!?) and to wait. And wait.

Then one of us doctors or Sheila Scrobogna, the administrator for the food phobia program, begins to try to feed the child. There’s an art to this, and it largely rests on the personal connection we have established with the child. Fortunately, it’s not hard to connect with children (humans are, thankfully, hard-wired for such connection). The first attempts are usually done without the parent, but when we achieve the first bite we bring the parents in to share in the child’s pride at their own ccomplishment. Then things move quickly, usually within hours.

That’s how it works when it’s easy. But there is a “nuclear option” for those cases where the fear is so entrenched we can’t make progress, and, although we hate to use it, we prefer it to failure for a family. The nuclear option, of course, is what is loosely referred to as “behavioral modification,” although it’s really a behavioral disincentive. The “modification” is asking parents to leave and not to return until the child has begun to eat. This involves tears (theirs, ours) and a great deal of hand-holding. It is never done without the parents’ consent or against their wishes. One ten year old girl told me when she was discharged, and repeated for another child’s parents: “I would never have had the courage to try and eat food if I hadn’t known that it was the only way I would get to see my mom. It was hard, but it worked.”

I am personally afraid of deep water and would certainly refuse to jump in a lake off a boat, but I sure as heck would if my grandson had fallen overboard. We all work like that. We can do hard things, sometimes even “impossible” ones, when properly incentivized.

This last week we sent home two young children with food phobia whose course had been difficult, but whose results were, ultimately, great. Oh but how we sweated those results! And how glad we were to return them to their homes far away! Obviously no one likes failure, especially when children are at stake. And so we draw a collective breath, heave a great sigh and march on to the next one. Vanquishing food phobia, one small kid at a time.