Food Phobia of Childhood:  a “new” eating disorder

By Julie K. O'Toole MD, MPH 

Introduction: 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.

Food phobia is the sudden onset of food refusal and may extend to refusal to swallow anything, even the patient’s own saliva.  These young patients easily become undernourished and dehydrated.  The “reason” these children give for their food refusal is often a fear of choking when they swallow or a fear of vomiting and/or germ contamination leading to illness; they may report food and water getting “stuck” in their throats or they may simply refuse to talk about why they won’t eat or drink.  In our experience, onset is usually abrupt; the child is young; there is a family history of anxiety disorders, and the child does not have anorexia or bulimia nervosa with the body dysmorphism and “fat fears” associated with those diagnoses. The onset of illness may be preceded by a choking episode, either experienced or witnessed, or in the case of Patient # 3 (see below), overheard.  This disorder may be preceded by an illness that involved vomiting or severe nausea.  Efforts on the part of the parents to bribe, cajole, threaten, plead, reward eating with “gold stars”, etc. are all to no avail.

As you will see from the case histories below, our treatment team at Kartini Clinic managed these patients on the general pediatric ward with some combination of 1) an NG tube and weight restoration; 2) the use of a neuroleptic (typically Olanzepine titrated up to about 7.5 mg q h.s., valued for its impact on cognitive distortions as well as its anxiolytic properties); 3) the eventual use of an SSRI to achieve more long-term anxiety control; and 4) behavioral incentives introduced towards the end of the stay.  The timing of the behavioral intervention is crucial.  If it is initiated too soon, before the child has learned to trust the team, it may be experienced as punitive and accompanied by increased anxiety. Our treatment team is multi-disciplinary and this seems to be an essential feature of its success as we need to contain parental anxiety, assess for any co-morbid psychiatric or medical problems, and plan for re-integration into home and school. During an in-patient stay our pediatricians lead the team and work with a child psychiatrist or psychiatric nurse practitioner and a family therapist. In our Day Treatment unit and outpatient clinic a child is cared for by milieu therapists, group therapists, pediatricians, family therapists and psychiatric providers.  Modeling ordered eating in a day treatment unit prior to going to an outpatient clinic has proven an essential ingredient to the re-integration of food phobic children to home and school.

 A discussion of the treatment and results follows the case histories presented below. Of note is the fact that Patient #3 was treated with Risperidone (Risperdal) rather than Olanzepine (Zyprexa), something we no longer do because of concerns about galactorrhea (milk production).  Because of her underlying diagnosis of autism we were unable to use N.G. feeds, a practice we usually find indispensable.

Kartini Clinic staff have authored an article on the importance of early identification of eating disorders in reducing disabling complications including bone growth and organ development. For a copy of this article please see http://www.psychiatrist.com/pcc/pccpdf/v09n01/ and then click on the link '16 Screening for Childhood Eating Disorders in Primary Care' to download the pdf file. Alternatively, please ask for a copy of the article at your next visit to the Clinic.

Thursday, June 05, 2008

BY JOYCE J. PERSICO

ROBBINSVILLE -- A Robbinsville family is one of two New Jersey plaintiffs to win a landmark lawsuit for eating-disorder patients against the Aetna Insurance Company due to the insurer's denial of claims to treat the condition as a biological ailment.

The suit is significant, according to attorney Bruce Nagel of the Nagel Rice L.L.P. firm in Roseland, because its consequences will affect not only the plaintiffs involved but all Aetna eating-disorder patients to come.

The Hartford, Conn.-based insurer will divide the $250,0000 settlement among approximately 100 families whose eating-disorder claims have been denied over the past seven years and change the way Aetna covers eating disorders, according to Nagel. The two main plaintiffs will receive $10,000 each and Aetna will pay up to $350,000 in legal fees to the Nagel Rice firm.

Nagel served as lead attorney in the class action suit brought by Robbinsville's Jeff Meiskin on behalf of his anorexic daughter and by a Bergen County father in the same situation with his daughter.

Meiskin's daughter, now 16, had her coverage cut off even though she required months of in-patient care. Aetna said her illness was a "non-biologically based mental illness." Coverage was limited to 20 outpatient visits per calendar year and 30 days of in-patient benefits.

Eventually, Meiskin enrolled his daughter at a Utah facility last January that required $26,000 to admit her and $30,000 monthly.

"The case is significant be cause it pays all families for claims denied over the past seven years and, going forward, it eliminates the limitations on coverage," Nagel explained. "It finally changes the way health insurers are dealing with eating disorders. What they do in New Jersey and throughout the country is treat an eating disorder as non-biologically based and they impose limits on coverage."

U.S. District Judge Faith S. Hochberg is expected to finalize the settlement June 16. Aetna spokesperson Cynthia Michener called the settlement "consistent with Aetna's goal of providing comprehensive, affordable coverage and service for all of its members." The company covers approximately 10-15 percent of New Jersey's insured residents, according to Nagel.

The attorney said, historically, such cases affect teenage women who were "literally removed from hospital care. Going forward, it could affect tens of thousands."

Nagel's firm also has an identical class action suit on behalf of eating-disorder patients in New Jersey against Horizon Blue Cross and Blue Shield pending in Newark federal court. Nagel referred to the Aetna suit as "the first settlement in a series of cases" his firm has on eating disorders.

Contact Joyce J. Persico at jpersi co@njtimes.com or at (609) 989-5662.

Announcement for Parents of Hospitalized Kartini Clinic Patients

In response to parents' requests for an earlier return to work, as well as to assist in the management of other children at home, Kartini Clinic will no longer require a parent to be present for daily morning rounds while their child is in the hospital, effective immediately.

Instead, one of the two doctors will meet with the parents on the weekend (either Saturday or Sunday) for a more lengthy update on the progress their child has made that week. While parents will not be able to reach doctors via phone during the week, they are still welcome to try to catch them for a brief update during their weekday rounds (usually in the morning). For major logistical problems parents can call Emanuel’s Registered Nurse Case Manager (Bethany or Shari) at 503-413-3554, before noon, or your child’s own nurse for daily information regarding vitals. Parents will still meet weekly with their Kartini Clinic family therapist and should continue to attend Parent Support Group on Mondays at 5 PM.

Kartini Clinic is raising its DTU fees effective January 7, 2008. If you have any questions about our rates, please don't hesitate to call us and ask for the business office.