(Sara Forman, MD, and Catherine Gordon, MD, MSC)

Understanding eating disorders

In recognition of National Eating Disorder Awareness week, February 21 to 27, we're featuring the various efforts of Children's Hospital Boston employees to understand and treat eating disorders. Patient and family names have been changed for confidentiality.

Small clues tipped Kristin off that her teenage daughter, Amanda, had an eating disorder. First, she noticed Amanda chewing and then surreptitiously spitting out mouthfuls of food while eating snacks. Soon, Amanda wasn't eating anything except celery, apples and carrots. She upped her exercise, running more and more miles each week and doing sit-ups in front of the television. At the same time, she was pushing herself to excel in her high school sophomore year, the pressure of academics mounting.

After a few months, the petite teen looked stick-thin and had dropped from 109 pounds to under 100 pounds. "I confronted her, and she was in denial about the problem," says Kristin. Amanda's pediatrician was consulted but, despite the best attempts by her doctor and parents, Amanda's weight continued to plummet. Soon, she was referred to Children's Hospital Boston Eating Disorder Program, where specialists in adolescent medicine, psychiatry, psychology, social work and nutrition evaluate more than 200 new patients every year.

Amanda is one of an estimated 24 million Americans suffering from an eating disorder, 90 percent of whom are women between 12 and 25. Although the media often portrays eating disorders as a modern phenomenon, they've actually been around for centuries. "Medical history documents anorexia as far back as the 1600s, when women took fasting to the extreme," says Sara Forman, MD, director of the Eating Disorder Program. "But the question is, were they doing it for the same reasons as teens do now?" No one really knows what causes eating disorders like anorexia and bulimia, but many, including Forman, believe it's a mix of genetics, culture and individual circumstance. "We talk about the gun being loaded biologically or genetically, and the trigger being pulled by society," says Forman.

Treating eating disorders with success is notoriously hard. "It's a psychiatric illness, which at times has a lot of denial and secrecy surrounding it," says Forman. "It takes long-term work." Intervening as early as possible is critical, as months or even years of malnutrition can take an immense toll on the body, and can result in osteoporosis, slowed growth, heart disturbances, loss of menstrual periods, depression and anxiety.

Over her almost two decades treating patients with eating disorders, Forman became aware of an acute need for evidence-based consensus around effective treatment for eating disorders. Although the American Psychological Association (APA) offers guidelines, clinicians employ a wide and varied range of treatments. "There are many different treatment protocols out there, and there's really little evidence to support one versus another," says Forman. Now, in an effort to help fill this void, Forman, along with Elizabeth Woods, MD, MPH, is heading a quality improvement project to compare Children's outpatient program with other eating disorder programs across the country. By looking retrospectively at the medical charts of patients with restrictive eating disorders in 11 different outpatient programs, she hopes to identify factors that may promote better outcomes. The finding of the study will be presented at the annual meeting of the Society for Adolescent Medicine in April.

Across the hall, Forman's colleague Catherine Gordon, MD, MSc, has also spent the past decade thinking about eating disorders, but her particular focus is on bone. As the director of Children's Bone Health Program, she's trying to understand the mechanism behind the bone loss seen frequently in girls with anorexia- and work out how to halt it.

Previous research has revealed that when you are malnourished, the hormones responsible for healthy bone formation are disrupted, but the exact mechanisms leading to bone loss are still not fully understood. Gordon's most recent research compares the bone marrow (the soft tissue found inside the body's bones) of girls with anorexia to the bone marrow of healthy girls, and may solve the mystery of why patients with eating disorders suffer from bone loss. Normal bone marrow contains stem cells that can either turn into fat cells or into osteoblasts, the cells responsible for bone formation. Contrary to what one would expect, the bone marrow of the girls with anorexia had significantly more fat cells than normal, far exceeding the number of osteoblasts. The girls who were healthy had some fat cells, but many more osteoblasts. "It seems like the hormonal abnormalities, resulting from malnutrition, drive the stem cells to preferentially turn to fat," says Gordon. "This could explain why there's a lack of bone formation in these patients." Gordon's next goal is to understand why the body does this- it could be its attempt to preserve body heat, for example.

Amanda had bone scans when she began treatment, but luckily, her anorexia was not advanced enough to result in bone injury. Now, after months of treatment at Children's, she's slowly putting on weight. "She's not cured," says Kristin. "But she is getting better." On a recent Tuesday evening, Kristin attended a Children’s support group for parents of children with eating disorders, where she was able to ask questions about medical care, mental health and nutrition, and share her story. "It's a chance for parents to learn from the experts, but more importantly, from each other," says Leah Grodin, Outpatient Eating Disorders Program coordinator. For Kristin, the parent support groups have given her access to a community of parents with unique insights into the challenges her family faces. "It's always helpful to realize you’re not alone, facing this really scary thing," she says.