Extreme Measures
When Kids' Size Is a Problem, Parents Seek New Solutions

By Carrie Arnold
Special to The Washington Post
Tuesday, February 24, 2009

After 15-year-old Christina received a diagnosis of anorexia nervosa in 2006, her parents were told there was only one thing to do: Send her to a residential treatment center. "The nutritionist, the family physician, the therapist: They all said she's got to go," her mother, Anna Grieco, remembers.

The Griecos had learned of Christina's illness just months earlier, although she had been struggling with the eating disorder for three years. They found outpatient therapy for her right away, but it didn't stop her from slashing her calories to starvation levels.

Feeling helpless and guilty, as if they were somehow to blame, the Griecos, who live in Chantilly, arranged for Christina to spend two months in an eating disorders clinic in Arizona, at a cost of more than $100,000.

In their haste, they forgot about a note that one therapist had scribbled on a scrap of paper: "Maudsley approach," it read. "Very effective for adolescents."

Looking back, the Griecos wish they had focused on it sooner.

Unlike traditional eating disorder treatment programs, which tend to equate parental involvement with parental interference, the Maudsley approach treats the family as an integral part of the healing process.

Named for the London hospital where it was developed in the 1980s, the Maudsley approach views food as medicine and parents as the optimal people to help their child return to health. Unlike traditional psychotherapy, this family-based treatment views the ill teenager as unable to start eating, rather than as choosing not to eat.

"Contrary to the general belief that kids with anorexia nervosa have an iron will, it's the exact opposite," said Tomas Silber, an adolescent medicine specialist and head of the Don Delaney Eating Disorders Program at Children's National Medical Center. "They literally cannot stop [starving]."

Therapist as Coach

Treatment with the Maudsley approach consists of three phases. During Phase I, the family focuses on working together to help the adolescent return to a healthy weight, with the therapist typically acting as a coach. As weight is restored and disordered thoughts start to retreat, Phase II hands control of food and eating back to the teenager. During Phase III, a therapist works with the adolescent to deal with any issues that might stand in the way of a healthy launch into adulthood. "Parents have to learn to step up to protect the child," Silber said, "and in the process of therapy you also let go of the older adolescent or young adult that emerges out of the disease."

A combination of promising research studies and the development of training programs for therapists has increased the popularity of this approach in the United States. The National Institutes of Health is funding research on the Maudsley approach at five universities across the country, and parent-advocates have stepped forward to demand further research.

As Daniel Le Grange, director of the Eating Disorders Clinic at the University of Chicago and one of the original developers of the Maudsley approach, said, "Parents are so helpful in taking care of children in any other sphere of life, why do we not include them when it comes to the treatment for anorexia?"

The exclusion of parents remains common in much anorexia treatment. Some therapists fear that parental involvement will interrupt the normal processes of growing up; others fear taking away the adolescent's control of something as fundamental as what they eat.

While Christina was at the treatment center, the Griecos were told not to act as the food police when she returned home, that any interference would derail her recovery.

"All we could do was watch, because we didn't know it was within our power to basically put that food in front of her and say, 'Eat,' " Anna Grieco said.

Yet a starving teenager is clearly out of control, Le Grange says, "and nothing trips up adolescent development more than the presence of the eating disorder."

Shortly after returning home, Christina relapsed. "I wasn't prepared well enough, because I went from that very monitored setting to complete and total freedom," Christina said. "So when I got home, I just went nuts." Soon she became so frightened of eating that she started making herself throw up, and her weight plunged.

In a desperate search to find help, Anna Grieco scoured the Internet. She stumbled across reports of the Maudsley approach and remembered the scribbled note from two years earlier.

What Grieco read seemed to contradict everything she had learned about eating disorders. "The more I read, the more I really realized that this looks like it will work," she said. "I mean, you want to get treatment for any illness that's shown through research that it will work," something traditional residential treatment programs typically lack.

Grieco's search led her to the University of North Carolina at Chapel Hill, whose hospital-based eating disorders program uses the Maudsley approach to teach parents how to help their child reach and maintain a healthy weight upon discharge.

Christina and Anna spent two months last summer at Chapel Hill, where Christina learned more about how eating disorders affect both mind and body. "I understood that my parents need to control my food or my eating disorder will kind of take over," Christina said. "Because frankly, at the time, I wasn't nourished enough to think straight."

While Christina attended therapy during the day, the staff taught Anna about nutrition and how to ensure that her daughter ate every meal and every snack, even as she remained terrified of food.

"Nine times out of 10," Le Grange said, "it boils down simply to the parents' being on the same page, speaking with one voice and making a persistent expectation that you need to finish what's on your plate."

Laura Collins of Warrenton knows firsthand the power of that expectation. Six years ago, her daughter, then 14, slid rapidly into the rabbit hole of anorexia. As Olympia faded away, the Collinses were told by therapists to back off, that Olympia would eat when she was ready. Yet Collins feared she would be dead before she was "ready" to eat. When the family stumbled across a British newspaper article on the Maudsley approach, they put together a plan to treat Olympia at home. She slowly got better.

"We had a very hard time convincing others that what we were doing was right," Collins said. "The illness is hard enough," she continued, without parents' feeling left in the dark about the best way to help their child recover from an illness with a mortality rate that can be as high as 20 percent when it becomes chronic.

Even for those who survive, recovery is not a sure thing, with the average time of recovery approximately five to seven years.

Faster Recovery

Treatment with the Maudsley approach appears to reduce that recovery time. More than 80 percent of patients recovered after one year of Maudsley treatment, according to a five-year follow-up study at the Maudsley hospital. (There is little comparative information for more-traditional forms of treatment.) Part of that reduction may be attributed to the method's emphasis on treating the illness early and aggressively, targeting teenagers who may have been sick for only months instead of years or decades. Another possibility may have to do with its immediate emphasis on reversing the process of self-starvation.

"A lot of the therapists say you just have to work through the issues, and I have no problem with that, but you also have to look at the medical aspect," Grieco said. "If you aren't completely on a nutritional footing with everyone else, you're not going to be able to think properly."

"I don't look at it as making them eat," Laura Collins said. "I see it as refusing to let them continue to be starved by the illness."

Achieving that equal footing can be complicated and time-consuming. Le Grange frequently tells families that at least one parent will need to monitor their child full time during the first few weeks, which means time off work for the parent and time away from school for the teen.

Single-parent families obviously find more difficulties with that, and even with the best clinical support, some families cannot make the Maudsley approach work for them. For those cases, Silber may recommend a traditional residential treatment center followed by outpatient care.

To help families like the Griecos, Collins founded Families Empowered and Supporting the Treatment of Eating Disorders (FEAST-ED), an organization Grieco has found crucial to her daughter's recovery.

To clinicians like Silber, FEAST-ED and its online parent-support forum play an important role. "The biggest handicap families have is that there's not sufficient therapists trained in the Maudsley approach, so they kind of have to wing it," Silber said.

Although Christina has had setbacks, she remains in recovery and credits the Maudsley approach for her success.

"I think the only way that eating disorders should be treated," she said, "is to take the control away from the eating disorder so that it becomes powerless, and give control to the parents who can make sound decisions for their child and make them nourished again."

Carrie Arnold is the author of "Next to Nothing: A Firsthand Account of One Teenager's Experience With an Eating Disorder" (Oxford, 2007). Comments: health@washpost.com.

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