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!