Childhood Eating Disorders Blog

Dear Readers, 

            In our book and on this blog, Marcia and I have written about the Maudsely method of Family Based Treatment (FBT) for anorexia nervosa. This is a form of treatment developed at the Maudsley Hospital in London that makes parents key players in their child’s recovery, putting them in control of refeeding their child or adolescent (once the child is physically out of danger) and returning her or him to health. Families and clinicians who have tried this method swear by it and there is even a website, www.maudsleyparents.org  that offers information and support for families engaged in FBT. Marcia’s own Parent-Assisted Meals and Snacks (PAMS), is based on FBT principles.

            There are also a number of studies being conducted on how to expand the use of this effective method of treatment. One of these is an NIH-sponsored clinical trial examining the effectiveness of FBT for early onset or emerging cases of anorexia, headed by Katharine L. Loeb, Ph.D., director of research for the Mt. Sinai Eating and Weight Disorders Program.

            Dr. Loeb is seeking patients between the ages of 10 and 17 who meet at least some of the criteria to be considered anorexic, and who have one or more parents or guardians also willing to participate in the study. If your child is refusing to maintain a normal body weight, has stopped having her periods, has a fear of weight gain or poor body image, or any other symptoms of anorexia, you may be eligible for this study.    

            Although statistics are hard to come by, the conventional wisdom in the eating disorders treatment field is that the earlier anorexia is treated, the better the outcome. Dr. Loeb hopes her research will eventually lead to a version of FBT specifically targeted at emerging or atypical cases of anorexia, so that it can be used in efforts to prevent this pernicious disorder from fully unfolding or becoming chronic. 

            Getting timely treatment is difficult because the existing criteria that doctors use to diagnose anorexia are not developmentally sensitive enough to allow them to always catch anorexia in its early stages. Often the child will deny or minimize having certain symptoms, leaving the pediatrician confused about whether to label the problem anorexia. For example the child might play down symptoms for fear of being made to gain weight, quit an athletic team, or stop her excessive exercising. The difference between calling the problem “anorexia” and calling it “normal dieting behavior” could be the difference between getting the help a child needs to stop the disease in its tracks or letting it get out of hand. Dr. Loeb hopes that her study will also aid in the creation of case identification methods that enable doctors to navigate these gray areas and recognize early onset cases.

            We stress in our book the importance of prevention; Dr. Loeb’s work is the kind of research we need to allow parents to fight anorexia before it becomes entrenched, before it has begun to do irreversible damage to the child’s bones, heart or brain. 

            To find out more about this study, which involves both family-based and individual interventions, or about other treatment options, please contact Lauren Alfano: tel. (212) 659 8724 or email,  Lauren.alfano@mssm.edu .

Take care,

Nancy

I spoke recently with Dr. Julie O’Toole, founder and medical director of the well-respected Kartini Clinic in Portland, OR. Kartini treats kids up to about age 22 who have eating disorders, using a family based method that relies heavily on parent participation in the child’s recovery.

                Dr. O’Toole is on the same page as Marcia and me: “Parent’s don’t cause eating disorders,” she said, “they are no more responsible for a child getting an eating disorder than they are for a child getting diabetes. Far from being the problem, parents are the only sensible partners that you have to adequately treat a child with an eating disorder.”

                Probably the biggest obstacle that this pediatrician and her team face is that of dealing with what she calls “affected or partially affected parents,” meaning the mom or dad who either has overcome an eating disorder in the past, is still dealing with one, or is grappling with body image or eating problems that have remained untreated or even unacknowledged.

                As Dr. O’Toole points out, we know that eating disorders are highly “heritable,” meaning that kids can inherit the genetic predisposition toward an eating disorder. Yet often parents of a child with anorexia or bulimia who have eating problems of their own feel ashamed, as though they were weak-willed, or bad parents.

                As we have pointed out many times before, there is still a stigma attached to having an eating disorder. This is one reason why Kartini has been working with scientists at Vanderbilt University on a genetic study of eating disorders. “I’ve always taken extensive, detailed family histories,” Dr. O’Toole said, “and our therapists are trained to watch for [multi-generational eating problems]. In this sort of more genetic, or scientific way, we hope to de-stigmatize eating disorders.” Her hope is that one day, parents will look at their eating problem just as objectively as the parent whose child has diabetes, is screened and found unable to fully metabolize sugar: no one blames the child or parent for their condition, we feel sorry for them for having inherited these particular genetic traits.

                One day, there will be a more effective treatment for eating disorders than the mix of medical intervention, education, and family, behavioral and nutritional therapy that is now used. “Right now, it’s like we’re treating tuberculosis in the pre-antibiotic era,” said Dr. O’Toole. “We can structure the environment so [patients] don’t get sick or worse, but we can’t really change the brain chemistry yet.”

                The future holds great promise, though, when it comes to solving eating disorders. “The brain science isn’t here yet,” said Dr. O’Toole, “but it will be.”

Take care,

Nancy