Friday, March 16, 2007

Book review: Take Charge of Your Child's Eating Disorder

I really wanted to like Take Charge of Your Child’s Eating Disorder, co-written by Pamela Carlton, M.D., who directs Stanford University’s Adolescent Eating Disorder Parent Education and Support Program. I’m a huge fan of the work being done at Stanford by James Lock and nearby at UC San Diego by Walt Kaye. But after reading this, I want to ask them both, “How could you have let this happen?”

Families with anorexic or bulimic children need all the information and help they can get. But for the most part, they’re not going to get it here.

If I’d read Carlton’s book when my daughter was newly diagnosed with anorexia, I would have wanted to shoot myself, mostly because of statements like this: “Full recovery from anorexia is not easy, and many people struggle with ongoing body image disturbances and disordered eating behaviors throughout their lives. Fortunately, with early treatment, your child’s chance for full recovery is likely to be increased.” (p. 9) This leads parents to believe that their child will be dealing with an eating disorder for the rest of her life—which in many cases is simply not true.

In reality, there’s lots of hope for full recovery, especially among adolescents who are treated early with family-based treatment, also known as Maudsley treatment. Nowhere does Carlton mention this as one of the treatment modalities for eating disorders. Instead, she recommends that parents put together a treatment team—a good idea, in and of itself—and says, “The most important thing to remember is you cannot do this alone.”

Actually, you can do this alone, and sometimes you should. A treatment team is great, so long as everyone is on the same page. My husband and I assembled a terrific treatment team, but there were times, inevitably, when they contradicted one another or said just the wrong thing to our daughter. It’s certainly better to have no therapist than a bad one—and the vast majority of eating disorders specialists out there are bad, make no mistake about it. A third of them have or had eating disorders themselves, which tells you something right there.

Throughout the book, Carlton pays lip service to the idea that parents should be involved in their child’s treatment. But she doesn’t actually seem to believe it. Take this example she offers about a 15-year-old, Jinny, in treatment for anorexia. She writes that because Jinny was fixated on her weight, she did not give the girl her weekly weight updates. Fair enough. Then she writes, “But after each appointment, her mother would follow me out of the room with her notebook, ready to write down a weight, promising, ‘It’s okay, I won’t tell Jinny.’ I finally told her this was not healthy for Jinny and her actions were undermining my efforts to help her stop focusing on her weight. We came up with a solution: since she really needed to know her weight progress, I would meet with her once a month to review her progress. Yes, I would share her weight with her, but she had to accept that it would only happen once a month and not at her daughter’s appointment.” (pp. 84-85)

Of course any parent who has watched their child starve themselves nearly to death is going to be fixated on weight. Each pound gained represents another step away from the awful abyss their child has fallen into. The notion that such interest is unhealthy or somehow undermining treatment is both wrong-headed and deeply offensive. I hope this mom fired Carlton and found a smarter, more compassionate therapist who would actually empower the family to help Jinny recover.

Carlton insists that families need to find experienced eating disorders therapists and specialists to make up the treatment team for their child. In my family's experience, the “specialists” were frequently so heavily invested in their own particular take on eating disorders—-and often this was an outmoded and ineffective one—-that they were not able to give my daughter what she needed. A good therapist can be helpful. A bad therapist can do a lot of damage. And you don’t need collateral damage when you’re dealing with an eating disorder.

Finally, Carlton seems to subscribe to the notion that eating disorders are caused at least in part by psychology: “Without appropriate psychiatric help and treatment, eating disorders can become lifelong illnesses. To regain a healthy relationship with her body and with food, your daughter may require long-term treatment, which may continue long after her body is considered medically healed. The average length of psychological treatment is two to three years.” (p. 88)

Actually studies on family-based treatment (the Maudsley approach) show that teens often recover without this kind of intensive psychological or psychiatric treatment, and the recovery "takes": 90 percent are still recovered five years later. Carlton’s perspective gives families the wrong message: that only the doctor can “take charge” of their child’s eating disorder and bring about recovery.

In my experience, and in the experiences of many families I know, the reverse is true: recovery happened when parents were empowered to "take charge" of their child's recovery, often with backing from a truly supportive team.

The best part of this book is the insurance section. Too bad Carlton didn't publish just that. Except for that one chapter, you’re better off reading Help Your Teenager Beat an Eating Disorder by James Lock and Daniel Le Grange or Eating With Your Anorexic by Laura Collins.

Sunday, March 11, 2007

Is anorexia like alcoholism?

The first question people ask after they read our family's story of helping our daughter Kitty recovery from anorexia: Is this like alcoholism, where she'll be dealing with it for the rest of her life?

It's a fair question, given the fact that traditional rates of relapse in anorexia are extraordinarily high--up to 50% of anorexia sufferers relapse within a year of treatment, according to one 2001 study. I know of several girls my daughter's age who are in the midst of relapses right now. My heart goes out to them.

The first few times people asked this question, it made me cry. The thought that my daughter might have to deal with anorexic thoughts, feelings, and behaviors for the rest of her life is awful and scary and beyond demoralizing.

But there's good reason to hope that for girls like Kitty, whose anorexia is treated relatively quickly (within 3 years of onset) and who become fully weight restored (not to 90 percent of their ideal body weight, as many clinicians are willing to settle for, but to 100 or 110 percent), relapse is far less likely. Preliminary studies of long-term outcomes for teens treated with the Maudsley approach, or family-based therapy, are very promising.

So now when people ask the question, I answer this way: We don't know what will happen for Kitty in the future. But we're hopeful that 10 years from now she will look back on anorexia as one of the trials of adolescence, not as a defining moment in her life. She'll remember it (actually I hope she doesn't remember many of the really bad moments) rather than still be experiencing it.

Our job will be to watch and protect her for the rest of her adolescence, especially when she goes to college, which is often a vulnerable time. Which, when you think of it, is what a parent's job is all about, anyway--to protect and take care of a child.