When Dieting Turns Deadly

Family-based therapy offers hope for those suffering from eating disorders
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Discovering that your child has an eating disorder is like falling down the rabbit hole into a disorienting netherworld where the usual rules have been turned on their head. How is it possible that the young person you nurtured and nourished is suddenly refusing nourishment—or frantically overindulging?

Susan Maccia’s rabbit-hole journey began at a family party in her Verona home in 2005. Her 13-year-old daughter, Christine, had just returned from camp, where she’d lost a considerable amount of weight. After eating dessert, Maccia says, her daughter seemed “agitated” and left the dinner table for her bedroom. When Maccia looked in on her to see what was up, she found Christine on the floor, frantically doing crunches and sobbing. It was the first inkling the family had that Christine was suffering from an eating disorder.

After receiving an official diagnosis from a therapist and spending several weeks searching for appropriate treatment, the Maccias were able to check her into the eating disorders unit at a nearby hospital, where, over the next few months, she was discharged and readmitted twice. It was clear that Christine wasn’t responding to treatment, and her mother was feeling increasingly desperate. “She was failing fast,” Maccia says, “and during her third hospitalization they basically said she had to go into a residential facility because she was in the grip of the eating disorder and didn’t have the strength to fight it at the time, mentally or physically.”

Because there were no residential facilities in New Jersey, Maccia enrolled her daughter in an eating disorders center in Utah that could take her immediately. After 13 months in treatment, Christine returned home. She had regained much of the weight that she’d lost; she was eating again; and, thanks to intensive therapy, she was feeling better about her weight and herself.

But last September, at the start of her freshman year at the University of North Carolina, Christine relapsed. Her parents pulled her out of school and she was readmitted to the rehab center. Today she’s living at home, attending college at Montclair State University and hoping to return to North Carolina in the near future. As Maccia learned firsthand, eating disorders like anorexia and bulimia are among the most intractable of illnesses.

Until recently, the best therapies showed only a 20 percent success rate after a year of treatment. And among mental illnesses, eating disorders are by far the most deadly, with a fatality rate of 10 percent per decade (which means that for each decade that a person suffers with the disease, her chance of dying is 10 percent). “There have been fantastic individual successes,” notes Thomas Insell, M.D., director of the National Institute of Mental Health, “but overall, it’s been a very difficult illness to treat.”

Giving families hope

That may be changing, though. Studies of so-called family-based therapy—in which the patient lives at home and the family takes charge of his or her care d(usually in partnership with a trained therapist)—are showing one-year success rates of 50 percent. When you compare that with the 20 percent rate for other treatments, says Dr. Insell, “it’s an important differential.” It’s certainly important to patients and their families. Katharine L. Loeb, Ph.D., associate professor of psychology at Fairleigh Dickinson University in Teaneck and director of research at the Mount Sinai School of Medicine’s Eating and Weight Disorders Program, has studied the Maudsley method—the model for most family-based therapies— and says it “allows us to avoid having a child’s schooling and social life significantly disrupted. And while parents initially worry that their lack of objectivity will be a disadvantage, they soon realize that no one is more dedicated to their child’s outcome than they are.”

What about siblings?

An eating disorder disrupts family life in countless ways, and it may make brothers and sisters feel both marginalized (“All anyone cares about is her”) and burdened by the illness. Family-based therapy sessions let siblings voice their grievances, understand what’s going on, and—most important—learn that they’re not to blame or responsible for making things better. Another significant benefit: Family-based therapy costs considerably less than an inpatient program.

Not an easy fix

Despite its benefits and success rates, family-based therapy does have drawbacks that may be prohibitive for some families. If both parents work, for example, one of them may have to take family or medical leave, or they may have to bring in a relative to cover for them during working hours. The job of getting an adolescent with anorexia to eat can be daunting—and disruptive—especially in the first phase of treatment, and not all families are willing, or able, to take it on. In addition, notes Dr. Loeb, “inpatient programs are often necessary if there’s medical instability”—if the eating disorder has resulted in severe dehydration or low heart rate, for instance. The good news is that if you do send your child to an inpatient program, you can apply the principles of family-based therapy to his or her transition to home life and independent eating once the child is discharged. And an increasing number of individual therapists are incorporating family-based methods into their treatment approaches.

The parents ’ job

In most family-based therapies there are three phases of treatment, and parents play an important role in all three. In the first, which usually lasts one to two months, parents are expected to assume complete control of their child’s eating behavior, and the entire family—siblings included—meets with a therapist, generally once a week. The therapist focuses on the dangers of severe malnutrition, assesses the family’s typical interaction pattern and eating habits, and, at a family meal, assists parents in encouraging their child to eat a little more than he or she was prepared to.

The therapist trains parents to express sympathy and understanding about their child’s ambivalence while at the same time being verbally persistent in their expectation that starvation is not an option. “What parents do isn’t punitive,” says Loeb. “It’s simply being very clear that, while their child may have many choices in the world, being ill isn’t one of them.” In the second phase, control of eating is gradually transferred back to the adolescent, and therapy focuses on the patient’s progress. When the transfer is complete, phase three begins; therapy at this point may be less about the eating disorder than about typical developmental issues like curfews and friendships. Even in phase three, it’s unlikely that the child will be making all food-related decisions on his or her own; as in other families, parents will still call at least some of the shots.

What about medication?

If your child is suffering from anxiety and/ or depression—conditions that often go hand in hand with an eating disorder— prescription antidepressants can help. Antidepressants may also help control the symptoms of bulimia and binge eating disorder, especially when used in conjunction with other therapies. Anorexia, however, remains mostly resistant to medication. “At one point there was a lot of interest in some of the atypical second-generation anti-psychotics,” notes Dr. Insell, “because they have weight gain as a major side effect. But the results were pretty disappointing, mainly because nobody wanted to take them.”

Early detection

Whatever the therapy, experts agree that the earlier an eating disorder is discovered and treated, the easier it is to manage. “We know that if people are identified and receive treatment early in the disorder, the chances of its becoming a severe chronic illness are significantly decreased,” says therapist Lara Gregorio, program manager at the National Eating Disorders Association (NEDA). In fact, NEDA is introducing legislation in several states to have eating disorders added to the list of required school health screenings, along with tests for vision, hearing, scoliosis and so on. Until that happens, however, parents need to be alert to potential signs.

According to Dr. Loeb, they include sudden, unexplained weight loss, a change in eating behaviors (a refusal to eat formerly favorite foods, for instance, or an unexpected switch to vegetarianism), evidence of visiting pro-anorexia or -bulimia websites, a tendency to run to the bathroom after meals or signs of secret bingeing (a feature of bulimia) such as a stash of food wrappers. If you suspect an eating disorder, talk with your child and let him or her know you’re concerned. Unless the conversation allays your suspicions (keeping in mind that denial often goes hand in hand with the condition), you should speak to a therapist as well—preferably someone who specializes in eating disorders. (“Without specialized training,” notes Loeb, “an eating disorder can be easy to miss.”) If you decide to pursue family-based therapy, you’ll find more information, including a list of therapists, on the websites maudsleyparents.org and feast-ed.org. If you can’t locate a specialist in your area, there are short courses, including one sponsored by the Eating Disorders Program at the University of California at San Diego, that train parents in the Maudsley method.

Why an eating disorder?

Most parents can’t help asking what caused the problem, and not long ago, an easy answer might have been “you.” Like autism and schizophrenia before them, anorexia and other eating disorders were once considered the result of a dysfunctional family environment. Now, an increasing number of researchers believe that biology—in the form of hormones, perhaps—and genetics (eating disorders tend to run in families, along with other conditions like anxiety and obsessive-compulsive disorder) both contribute too.

Culture plays a role as well: Kids today can’t escape the pervasive message that fat is bad and thin is good, and they’re dieting—and developing eating disorders—at increasingly younger ages. “We used to say it started at 13 in girls,” notes Dr. Insell, “but it’s happening earlier today and it’s happening in boys too. There was also a time when this was thought to be mostly a white, uppermiddle- class kids’ disease, but that’s not true anymore either.” He notes that eating disorders often strike the most successful adolescents—kids who were good students and high-performing athletes. Christine Maccia, for example, was a competitive swimmer who was terrified that she wouldn’t make her times if she put on weight.

But Dr. Loeb is quick to point out that it’s not all about culture: “There’s more going on in the body that puts this small subset of young people at risk for this very terrible illness,” she says. In fact, one of the salient features of familybased therapy is that it doesn’t concentrate on the “why” of eating disorders but on the all-important “how”: how to empower families to come together and save the life of the child they cherish.

3 key eating disorders

Anorexia nervosa involves an obsession about food and weight and, generally, the desire to lose weight by any means possible, including starvation and/or excessive exercise.

Bulimia nervosa is characterized by bingeing—eating large amounts of food—followed by purging—an attempt to quickly get rid of the extra calories through forced vomiting or extreme exercise.

Binge eating disorder is similar to bulimia in that it involves bingeing—extreme overeating— but it doesn’t involve purging.


For information, support and more resources, contact the National Eating Disorders Association (NEDA) at 212.575.6200 or nationaleatingdisorders.org.

 

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