Just one rule: Eat

BY the spring of 2001, Chrissie Henneberg had become excessively thin, almost skeletal. But even as the pounds fell away -- 35 in all -- the once normal-weight teenager laced up her sneakers every day for a five-mile run.

She denied there was a problem. But her increasingly worried parents, who had been planning to send the 17-year-old to college in the fall, took her to a family doctor, then to a clinic specializing in eating disorders.

The news wasn’t good. “They said she was severely anorexic and needed to go into the hospital right away,” said her mother, Jeanne Moulton. “That was a real blow to us.”

But, devastated though they were, the Palo Alto family did not embark on the traditional treatment for anorexia. That approach -- lengthy psychotherapy that often views the family as a cause or contributor to the problem -- entrusts patients to arrive at their own decisions. Instead, the family participated in a novel treatment that is gaining favor -- and some criticism -- across the country. Its early stage has a single goal: Get the kid to eat.

Already used at about half a dozen U.S. clinics, including a program at Stanford University, where Chrissie was treated, so-called family-based treatment casts no blame.

Parents, and even siblings, enter therapy with the patients, learning how to out-maneuver the attempts to avoid food. They prepare all meals for the patients, eat with them, cheer them on and work closely with therapists.

“The family has an integral role in the promotion of their daughter’s recovery, and that is a real shift from before,” says Dr. Jennifer Hagman, an eating disorders specialist at the Children’s Hospital in Denver. “The family starts on Day 1 learning how to take care of their child.”

Under the family-based approach, parents can inform the child that, if she cannot eat most of her food, she will have to consume a liquid supplement. Further, refusal to eat has consequences, such as not being allowed to attend a social event or return to school. Parents use social pressure too, by not allowing anyone, including siblings, to leave the table until the child with the eating disorder has eaten a sufficient amount.

“The rules were laid down. There was a diet and we had to follow it,” Moulton recalls. “She was cooperative, but she was super sensitive about certain things.”

Yearning to attend college in the fall, Chrissie frequently became frustrated with her parents’ intensive management of her life and what she believed were insults.

“I remember one of the first days I was back from the hospital,” says Chrissie, now 21 and a recent graduate of Pomona College. “I had prepared this big plate of food for dinner. My dad looked at it and said, ‘You get to have a real feast.’ To me, that was the most upsetting thing he could have said. It was like I was pigging out.”

The summer was marked by occasional tears, accusations, tensions -- and meals that took center stage. Gradually, the dedication paid off.

“I could see how much effort my parents were making,” Chrissie says. “I guess that is the most important thing: I knew how much they were learning and how hard they were trying.”

With Chrissie on her way to recovery, her parents kept up their end of the bargain, allowing her to go away to college while she continued therapy. She suffered no relapses and today considers herself healthy.

Hard-earned healing

Families who use the method admit it’s not easy. But in the world of eating disorders, nothing is.

Such disorders include anorexia nervosa, in which a distorted body image leads a person to deliberately restrict food, and bulimia, in which an obsession with food causes cycles of bingeing and purging. Compulsive exercise is common in both syndromes.

The conditions affect an estimated 8 million Americans, men and women of all ages and races. But they occur most often in teenage girls.

The last few decades have produced only incremental advances in treating the disorders, which are among the most lethal of any psychiatric illness, experts say. An estimated 5% to 10% of anorexics eventually die as a result of the illness.

Recovery is hard-earned and relapse is common. Two-thirds of anorexics report their illness lasted more than five years, according to the National Assn. of Anorexia Nervosa and Associated Disorders, and only half consider themselves cured.

Chronic illness can result in a ruptured stomach; serious heart, kidney and liver damage; osteoporosis; tooth or gum erosion and esophageal tears. Deaths usually result from heart failure or suicide.

With little scientific evidence to show what works best, most therapists say they use a variety of treatments.

One approach includes individual psychotherapy to explore the possible causes of the disorder, such as anxiety about growing up, body changes associated with puberty and cultural pressures on girls to be thin.

Another traditional approach examines ways in which the family may be a factor, including unhealthy parent-child relationships, communication problems and conflict avoidance.

These approaches, though helpful to many patients, do not result in widespread success. And families of children with eating disorders often can’t find treatment programs in their area or are turned away for lack of insurance or because of a long waiting list.

“What most of us get is really very crappy,” says Laura Collins, a Virginia-based journalist who recently wrote a book about her experience with the new, family-focused approach. “Right now, it’s like a 911 call and the first ambulance that comes, you take.”

Unlike the traditional approaches, family-based therapy focuses almost exclusively on the symptoms of the disorder rather than the cause.

The method is universally known as the Maudsley approach, named after the renowned London hospital where it originated. It relies on weight gain and changing eating behavior by enlisting the family’s help in managing the patient from meal to meal, day to day.

Collins and her husband discovered the approach on the Internet. At that point, she recalls, the family was desperate. Their 14-year-old daughter had suddenly refused almost all sustenance, losing 21 pounds in seven weeks.

Among the first four therapists the family contacted, two were not taking new patients, one did not return their calls and one didn’t take their insurance.

They considered a hospital inpatient program two hours from their home but did an about-face on admission day when it became clear that the parents would be largely excluded from the therapy.

So the couple decided to treat her at home. They calibrated her meals to pack in the most calories possible. They sat at the table with her until she ate, sometimes remaining there for hours.

“It was hard to know when one meal ended and another began,” Collins says.

Their daughter was not allowed to do anything or go anywhere until the meal was taken. She was not allowed to close the door to the bathroom, lest she force herself to vomit. Exercise was forbidden.

In private, the parents cried. But their daughter began to gain weight. She was physically stable after one month and back to her original weight after four months. It took several more months before she achieved a normal, healthy eating pattern, Collins says.

“It was the hardest thing I ever did, but I have no regrets,” says Collins. “I compare it to the alternative of turning my child over to a stranger with uncertain results and at great expense.”

Collins was aided by the book “Treatment Manual for Anorexia Nervosa: A Family-Based Approach,” co-written by Dr. James Lock, director of the eating disorders program at Stanford’s Lucile Salter Packard Children’s Hospital. The book has become a bible for therapists who want to try the method.

Lock says he turned to the method when he grew frustrated over his patients’ high relapse rate after hospitalization or an intensive outpatient program.

Moreover, Lock found that most studies of eating-disorder treatments were in adults -- and the results weren’t promising.

In one study of 21 anorexic girls conducted at the Maudsley Hospital, 90% of the patients treated with the method had a good outcome after one year compared with 18% of the patients who received individual therapy.

In a study published in January in the Journal of the American Academy of Child and Adolescent Psychiatry, Lock and Daniel le Grange, director of the eating disorders program at the University of Chicago Hospitals, found that after an average of 17 sessions, 56% of the anorexic patients receiving family-based therapy (the term they prefer) had a good outcome, 33% had an intermediate outcome and 11% had a poor outcome. The study consisted of 45 patients.

Turning parents into quasi-therapists has a practical side too. A two-week hospitalization for anorexia can easily cost $50,000, and insurance coverage varies widely.

Some insurance plans, experts say, will authorize hospitalization only when a patient reaches a precarious physical state. Others will cover only a limited number of outpatient therapy sessions.

“Parents are having to do this out of necessity,” says Nancy Zucker, director of Duke University’s Eating Disorders Program.

A promising method

The family-based approach has the best chance of success, experts say, when relatives work closely with a therapist and other professionals, such as a nutritionist.

Various clinics have adapted the method to their programs. Some begin with hospitalization; some include parent support groups.

At Children’s Hospital in Denver, the program can begin during hospitalization. Parents, and even siblings, come to the hospital and eat every meal with the patient and the therapist.

Families are able to view how the therapist entices the patient to eat with encouragement and choices. (“You don’t have to drink the milk, but you must drink something other than water.”)

“We teach them how to make this dreaded experience tolerable,” Hagman says. “But it’s really a partnership instead of me telling them this is what you’re going to do.”

Parents in control

At Stanford, once a child begins therapy at home, Lock has the family bring in a typical dinner and eat with him in his office to see what they’re eating and observe the interactions during the meal.

But in all the programs, control is only gradually ceded to the patient.

Families in the intensive first stage often must take time from work, enlist friends and relatives to help watch the patient and cancel virtually everything else in their lives for weeks or months.

Justin Roberts, now a 165-pound high school senior, weighed 87 pounds when he was hospitalized at Stanford four years ago. His heart rate was half of normal and doctors told the Roberts family that Justin was near death.

The eighth-grader had been struggling to eat normally for almost a year and, said his mother, Susan, “if you said anything to him about it, he’d go into a rage.”

After a two-week hospitalization and 20-pound weight gain, the family was sent home with instructions on how to “re-feed8” Justin.

“Justin wanted to get better,” Susan says. “I think he appreciated the fact that we were all in it together. It wasn’t just about him. It was about all of us.”

The family catered to his every dietary whim as long as it was about consuming food, not spurning it. “If he came downstairs and said, ‘I feel like ice cream,’ it was like, ‘OK, we’re there,’ ” Susan recalls.

The approach establishes the parents as the guardians of their child’s health -- a necessity when a child is critically ill, Lock says.

Under a more traditional approach to eating disorders, therapists are reluctant to impinge on a teenager’s budding sense of autonomy.

“Silence gives this disorder a lot of power,” Zucker says. “Parents fear saying the wrong thing. But that keeps you from saying, ‘Did you eat today?’ ”

Not everyone is enamored of the family-based method. Some parents object to what they perceive as coercion of the child during the re-feeding stage, and Collins says some parents have accused her of force-feeding her child and of being abusive.

And many therapists simply doubt that parents can be reliable allies in the treatment process.

“Therapists cringe when they first hear about it because what many of us see in the trenches is that the parents are a huge problem,” says Carolyn Costin, clinical director of Monte Nido, a Malibu treatment center. “The mother herself can’t eat or the father has no relationship with the daughter.”

Nicole M. Bourquin, a therapist in Lake Forest, says many parents are too busy to assist in their child’s therapy.

“My experience is that the family dynamics are not healthy enough for that kind of pressure to be put on the parents or the child,” she says. “What usually happens is the more pressure the parents add to the child, the worse off the kids are going to be.”

Another frequent criticism of the method is that it doesn’t analyze the root causes of the eating disorder.

“It relies on the fact that the underlying dynamics don’t need to be worked out first. I don’t think that’s right in all cases,” Costin says.

But Lock says parents can more easily help the child if they are absolved of blame.

“If you blame parents, they become isolated, withdrawn, ineffective and often feel incompetent,” says Lock. “That isn’t how you want any parent with a sick child to feel. You want them to feel helpful and like they are the agents for their child.”

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Early signs

Eating disorders often start with specific behaviors. A person may be developing a disorder if he or she:

* Stops coming to dinner or skips breakfast, but always has an excuse.

* Gradually eliminates more foods from his or her diet.

* Is inflexible about eating, such as eating only certain foods or only at certain times of the day.

* Withdraws from friends to avoid social gatherings that may include food or because of preoccupation with weight loss.

* Becomes overextended with activities and always stressed out. (Eating disorders often occur in children who are top performers in a sport or at school.)

* Makes excuses about not eating.

* Has a tough time setting personal limits.

* Is a perfectionist.

* Tries to please everyone.

Source: National Eating Disorders Assn.

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Resources

* National Eating Disorders Assn.: The country’s largest nonprofit organization on eating disorders supports research and advocacy, provides educational materials and support for families, and offers referrals for treatment. (800) 931-2237, www.NationalEatingDisorders.org.

* National Assn. of Anorexia Nervosa and Associated Disorders: The nonprofit group provides information and lobbies for insurance parity and research on eating disorders. It also offers treatment referrals. (847) 831-3438, www.anad.org.

* “Help Your Teenager Beat an Eating Disorder,” by Dr. James Lock and Daniel le Grange. A book for parents on family-based treatment by doctors who are researching the method.

* “Eating With Your Anorexic,” by Laura Collins. A mother’s first-person account of family-based treatment.

* “Just a Little Too Thin,” by Michael A. Strober and Meg Schneider. This book helps parents recognize the early signs of an eating disorder and what to do about it.

* “I’m, Like, So Fat!,” by Dianne Neumark-Sztainer. An eating disorders expert offers guidance for parents on helping teens make healthy choices about food.