I've often wondered why it is that we've been successful in treating children with food phobia while so many other facilities fail to do so. I don't say this to toot our own horn; it's just a fact. Most of our patients with food phobia (aka fear of swallowing) have come to us as treatment failures from other centers, and usually after having been subjected to a battery of tests by multiple specialists, both medical and mental health.
So is our success due to our use of the neuroleptic medication Olanzepine/Zyprexa, which blocks certain dopamine receptors in the brain? Or does it stem from the self-confidence a coherent treatment protocol gives the whole team, including the parents and child? Or perhaps—dare I suggest it— is it due to what I call the "give-a-damn" factor?
I do not mean to imply that most other providers don't give a damn, but the frustrating reality is many of them are treating one symptom (swallowing difficulty), one organ (say, the throat, or whatever they specialize in), and, when that fails to help, are eventually convinced the child is simply being "oppositional" or the parents are "neurotic." A flood of disjointed specialists' evaluations and treatments ensue that are not coordinated by a single treatment team. One by one, practitioners give up and the child is moved on to the next set of tests and "experts" (invariably duplicating efforts, at great cost in money and energy to family and child). Family and child get caught in the "system" and no one provider or team takes (or cares to take) responsibility for coordinated care.
Many times, as with other complex medical problems, one specialist does not deeply read what has gone before. The family history of anxiety is not discovered. The child's anxiety is not revealed. In this way surgeons become involved (placement of G-tubes), or psychiatrists are called in to prescribe an SSRI such as Prozac and other, entirely irrelevant and useless medications for treating eating disorders, such as anti-nausea, anti-depressants, anti-acids, etc. And children -- scared little children -- end up in psych wards, where they have no business being. It makes us furious.
So I asked Sheila Scrobogna, our food phobia program coordinator, who has re-fed several of our patients with food phobia, to give her thoughts on the re-introduction of food in these children. Leaving aside for a moment the need for an understanding of appropriate medication for this illness (!) I believe it's a perfect example of the often elusive ingredient in eating disorder treatment for children: the give-a-damn factor.
"When I first started feeding food phobia patients I was a little scared myself. My heart beat faster when I walked in the room, my palms were sweaty and my brain raced with thoughts and ideas. But as soon as I saw that little child sitting in the hospital bed, eyes wide, starring up at me - a nervous, hesitant smile on its lips - my shoulders dropped and my mind grew clear, and I was able to focus on this one child.
The process of feeding a food phobia patient is filled with emotion. You care so much about what you are doing and you desperately want to help. Your days can be measured by how well your 'new friend' ate. If it is a bad day for them, it is a bad day for you. To be clear: I am not a medical doctor, not even a therapist. I do not hold a Ph.D. These kids have seen plenty of those already. But I am someone who cares deeply about these children's lives, and I think that shows. Most importantly, I believe, children instinctively understand and respond to caring far better than adults.
Slowly, as our food phobia patients learn to trust us, they also learn to trust our treatment program. And even though some days seem dark and it is hard to see the light at the end of the tunnel, that light is always there. It is in every child that comes to see us. One day during treatment, it turns back on, shining brighter than before.
We are all in the process of learning more about this illness. We don't have all the answers yet; no one does. But we know a lot more than we did when we started. And we care most of all that it works!"