Fighting Anorexia: No One To Blame

Emily Krudys can pinpoint the moment her life fell apart. It was a fall afternoon in the Virginia suburbs, and she was watching her daughter Katherine perform in the school play. Katherine had always been a happy girl, a slim beauty with a megawatt smile, but recently, her mother noticed, she'd been losing weight. "She's battling a virus," Emily kept on telling herself, but there, in the darkened auditorium, she could no longer deny the truth. Under the floodlights, Katherine looked frail, hollow-eyed and gaunt. At that moment, Emily had to admit to herself that her daughter had a serious eating disorder. Katherine was 10 years old.

Who could help their daughter get better? It was a question Emily and her husband, Mark, would ask themselves repeatedly over the next five weeks, growing increasingly frantic as Katherine's weight slid from 48 to 45 pounds. In the weeks after the school play, Katherine put herself on a brutal starvation diet, and no one--not the school psychologist, the private therapist, the family pediatrician or the high-powered internist--could stop her. Emily and Mark tried everything. They were firm. Then they begged their daughter to eat. Then they bribed her. We'll buy you a pony, they told her. But nothing worked. At dinnertime, Katherine ate portions that could be measured in tablespoons. "When I demanded that she eat some food--any food--she'd just shut down," Emily recalls. By Christmas, the girl was so weak she could barely leave the couch. A few days after New Year's, Emily bundled her eldest child into the car and rushed her to the emergency room, where she was immediately put on IV. Home again the following week, Katherine resumed her death march. It took one more hospitalization for the Krudyses to finally make the decision they now believe saved their daughter's life. Last February, they enrolled her in a residential clinic halfway across the country in Omaha, Neb.--one of the few facilities nationwide that specialize in young children with eating disorders. Emily still blames herself for not acting sooner. "It was right in front of me," she says, "but I just didn't realize that children could get an eating disorder this young."

Most parents would forgive Emily Krudys for not believing her own eyes. Anorexia nervosa, a mental illness defined by an obsession with food and acute anxiety over gaining weight, has long been thought to strike teens and young women on the verge of growing up--not kids performing in the fourth-grade production of "The Pig's Picnic." But recently researchers, clinicians and mental-health specialists say they're seeing the age of their youngest anorexia patients decline to 9 from 13. Administrators at Arizona's Remuda Ranch, a residential treatment program for anorexics, received so many calls from parents of young children that last year, they launched a program for kids 13 years old and under; so far, they've treated 69 of them. Six months ago the eating-disorder program at Penn State began to treat the youngest ones, too--20 of them so far, some as young as 8. Elementary schools in Boston, Manhattan and Los Angeles are holding seminars for parents to help them identify eating disorders in their kids, and the parents, who have watched Mary-Kate Olsen morph from a child star into a rail-thin young woman, are all too ready to listen.

At a National Institute of Mental Health conference last spring, anorexia's youngest victims were a small part of the official agenda--but they were the only thing anyone talked about in the hallways, says David S. Rosen, a clinical faculty member at the University of Michigan and an eating-disorder specialist. Seven years ago "the idea of seeing a 9- or 10-year-old anorexic would have been shocking and prompted frantic calls to my colleagues. Now we're seeing kids this age all the time," Rosen says. There's no single explanation for the declining age of onset, although greater awareness on the part of parents certainly plays a role. Whatever the reason, these littlest patients, combined with new scientific research on the causes of anorexia, are pushing the clinical community--and families, and victims--to come up with new ways of thinking about and treating this devastating disease.

Not many years ago, the conventional wisdom held that adolescent girls "got" anorexia from the culture they lived in. Intense young women, mostly from white, wealthy families, were overwhelmed by pressure to be perfect from their suffocating parents, their demanding schools, their exacting coaches. And so they chose extreme dieting as a way to control their lives, to act out their frustration at never being perfect enough. In the past decade, though, psychiatrists have begun to see surprising diversity among their anorexic patients. Not only are anorexia's victims younger, they're also more likely to be black, Hispanic or Asian, more likely to be boys, more likely to be middle-aged. All of which caused doctors to question their core assumption: if anorexia isn't a disease of type-A girls from privileged backgrounds, then what is it?

Although no one can yet say for certain, new science is offering tantalizing clues. Doctors now compare anorexia to alcoholism and depression, potentially fatal diseases that may be set off by environmental factors such as stress or trauma, but have their roots in a complex combination of genes and brain chemistry. In other words, many kids are affected by pressure-cooker school environments and a culture of thinness promoted by magazines and music videos, but most of them don't secretly scrape their dinner into the garbage. The environment "pulls the trigger," says Cynthia Bulik, director of the eating-disorder program at the University of North Carolina at Chapel Hill. But it's a child's latent vulnerabilities that "load the gun."

Parents do play a role, but most often it's a genetic one. In the last 10 years, studies of anorexics have shown that the disease often runs in families. In a 2000 study published in The American Journal of Psychiatry, researchers at Virginia Commonwealth University studied 2,163 female twins and found that 77 of them suffered from symptoms of anorexia. By comparing the number of identical twins who had anorexia with the significantly smaller number of fraternal twins who had it, scientists concluded that more than 50 percent of the risk for developing the disorder could be attributed to an individual's genetic makeup. A few small studies have even isolated a specific area on the human genome where some of the mutations that may influence anorexia exist, and now a five-year, $10 million NIMH study is underway to further pinpoint the locations of those genes.

Amy Nelson, 14, a ninthgrader from a Chicago suburb, thinks that genes played a role in her disease. Last year Amy's weight dropped from 105 to a skeletal 77 pounds, and her parents enrolled her in the day program at the Alexian Brothers Behavioral Health Hospital outside Chicago. Over the summer, as Amy was getting better, her father found the diary of his younger sister, who died at 18 of "unknown causes." In it, the teenager had calculated that she could lose 13 pounds in less than a month by restricting herself to less than 600 calories a day. No salt, no butter, no sugar, "not too many bananas," she wrote in 1980. "Depression can run in families," says Amy, "and an eating disorder is like depression. It's something wrong with your brain." These days, Amy is healthier and, though she doesn't weigh herself, thinks she's around 100. She has a part in the school play and is more casual about what she eats, even to the point of enjoying ice cream with friends.

Scientists are tracking important differences in the brain chemistry of anorexics. Using brain scans, researchers at the University of Pittsburgh, led by professor of psychiatry Dr. Walter Kaye, discovered that the level of serotonin activity in the brains of anorexics is abnormally high. Although normal levels of serotonin are believed to be associated with feelings of well-being, these pumped-up levels of hormones may be linked to feelings of anxiety and obsessional thinking, classic traits of anorexia. Kaye hypothesizes that anorexics use starvation as a mode of self-medication. How? Starvation prevents tryptophane, an essential amino acid that produces serotonin, from getting into the brain. By eating less, anorexics reduce the serotonin activity in their brains, says Kaye, "creating a sense of calm," even as they are about to die of malnutrition.

Almost everyone knows someone who has trouble with food: extremely picky eating, obsessive dieting, body-image problems, even voluntary vomiting are well known. But in the spectrum of eating disorders, anorexia, which affects about 2.5 million Americans, stands apart. For one thing, anorexics are often delusional. They can be weak with hunger while they describe physical sensations of overfullness that make it physically uncomfortable for them to swallow. They hear admonishing voices in their heads when they do manage to choke down a few morsels. They exercise compulsively, and even when they can count their ribs, their image in the mirror tells them to lose more.

When 12-year-old Erin Phillips, who lives outside Baltimore, was in her downward spiral, she stopped eating butter, then started eating with chopsticks, then refused solid food altogether, says her mother, Joann. Within two months, Erin's weight had slipped from 70 to 50 pounds. "Every day, I'd watch her melt away," Joann says. Before it struck her daughter, Joann had been dismissive about the disease. "I used to think the person should just eat something and get over it. But when you see it up close, you can't believe your eyes. They just can't." (Her confusion is natural: the term anorexia comes from a Greek word meaning "loss of appetite.")

Anorexia is a killer--it has the highest mortality rate of any mental illness, including depression. About half of anorexics get better. About 10 percent of them die. The rest remain chronically ill--exhausting, then bankrupting, parents, retreating from jobs and school, alienating friends as they struggle to manage the symptoms of their condition. Hannah Hartney of Tulsa, Okla., was first hospitalized with anorexia when she was 10. After eight weeks, she was returned to her watchful parents. For the last few years, she was able to maintain a normal weight but now, at 16, she's been battling her old demons again. "She's not out of the woods," says her mother, Kathryn.

While adults can drift along in a state of semi-starvation for years, the health risks for children under the age of 13 are dire. In their preteen years, kids should be gaining weight. During that critical period, their bones are thickening and lengthening, their hearts are getting stronger in order to pump blood to their growing bodies and their brains are adding mass, laying down new neurological pathways and pruning others--part of the explosion of mental and emotional development that occurs in those years. When children with eating disorders stop consuming sufficient calories, their bodies begin to conserve energy: heart function slows, blood pressure drops; they have trouble staying warm. Whatever estrogen or testosterone they have in their bodies drops. The stress hormone cortisol becomes elevated, preventing their bones from hardening. Their hair becomes brittle and falls out in patches. Their bodies begin to consume muscle tissue. The brain, which depends at least in part on dietary fat to grow, begins to atrophy. Unlike adult anorexics, children with eating disorders can develop these debilitating symptoms within months.

Lori Cornwell says her son's descent was horrifyingly fast. In the summer of 2004, 9-year-old Matthew Cornwell of Quincy, Ill., weighed a healthy 49 pounds. Always a picky eater, he began restricting his food intake until all he would eat was a carrot smeared with a tablespoon of peanut butter. Within three months, he was down to 39 pounds. When the Cornwells and their doctor finally located a clinic that would accept a 10-year-old boy, Lori tucked his limp body under blankets in the back seat of her car and drove all night across the country. Matthew was barely conscious when he arrived at the Children's Hospital in Omaha. "I knew that I had to get there before he slipped away," she says.

With stakes this high, how do you treat a malnourished third grader who is so ill she insists five Cheerios make a meal? First, say a growing number of doctors and patients, you have to let parents back into the treatment process. For more than a hundred years, parents have been regarded as an anorexic's biggest problem, and in 1978, in her book "Golden Cage," psychoanalyst Hilde Bruch suggested that narcissistic, cold and unloving parents (or, alternatively, hypercritical, overambitious and overinvolved ones) actually caused the disease by discouraging their children's natural maturation to adulthood. Thirty years ago standard treatment involved helping the starving and often delusional adolescents or young women to separate psychologically--and sometimes physically--from their toxic parents. "We used to talk about performing a parental-ectomy," says Dr. Ellen Rome, head of adolescent medicine at the Cleveland Clinic.

Too often these days, parents aren't so much banished from the treatment process as sidelined, watching powerlessly as doctors take what can be extreme measures to make their children well. In hospitals, severely malnourished anorexics are treated with IV drips and nasogastric tubes. In long-term residential treatment centers, an anorexic's food intake is weighed and measured, bite by bite. In individual therapy, an anorexic tries to uncover the roots of her obsession and her resistance to treatment. Most doctors use a combination of these approaches to help their patients get better. Although parents are no longer overtly blamed for their child's condition, says Marlene Schwartz, codirector of the Yale eating-disorder clinic, doctors and therapists "give parents the impression that eating disorders are something the parents did that the doctors are now going to fix."

Worse, the state-of-the-art protocols don't work for many young children. A prolonged stay in a hospital or treatment center can be traumatic. Talk therapy can help some kids, but many others are too young for it to be effective. Back at home, family mealtimes become a nightmare. Parents, advised not to badger their child about food, say nothing--and then they watch helpless and heartbroken as their child pushes the food away.

In the last three years, some prominent hospitals and clinics around the country have begun adopting a new treatment model in which families help anorexics get better. The most popular of the home-based models, the Maudsley approach, was developed in the 1980s at the Maudsley Hospital in London. Two doctors there noticed that when severely malnourished, treatment-resistant anorexics were put in the hospital and fed by nurses, they gradually gained weight and began to participate in their own recovery. They decided that given the right support, family members could get anorexics to eat in the same way the nurses did. These days, family-centered therapy works like this: A team of doctors, therapists and nutritionists meets with parents and the child. The team explains that while the causes of anorexia are unclear, it is a severe, life-threatening disease like cancer or diabetes. Food, the family is told, is the medicine that will help the child get better. Like oncologists prescribing chemotherapy, the team provides parents with a schedule of calories, lipids, carbohydrates and fiber that the patient must eat every day and instructs them on how to monitor the child's intake. It coaches siblings and other family members on how to become a sympathetic support team. After a few practice meals in the hospital or doctor's office, the whole family is sent home for a meal.

"I told my daughter, 'You're going to hate this'," says Mitzi Miles, whose daughter Kaleigh began struggling with anorexia at 10. "She said, 'I could never hate you, Mom.' And I said, 'We'll see'." The first dinner at the Miles home outside Harrisburg, Pa., was a battle--but Mitzi, convinced by Kaleigh's doctor she was doing the right thing, didn't back down. After 45 minutes of yelling and crying, Kaleigh began to eat. Over the next 20 weeks, Kaleigh attended weekly therapy sessions, and Mitzi got support from the medical team, which instructed her to allow Kaleigh to make more food choices on her own. Eleven months later, Kaleigh is able to maintain a normal weight. Mitzi no longer measures out food portions or keeps a written log of her daily food intake.

Critics point out that the Maudsley approach won't work well for adults who won't submit to other people's making their food choices. And they charge that in some children, parental oversight can do more harm than good. Young anorexics and their parents are already locked in a battle for control, says Dr. Alexander Lucas, an eating-disorder specialist and professor emeritus at the Mayo Clinic in Minnesota. The Maudsley approach, he says, "may backfire" by making meals into a battleground. "The focus on weight gain," he says, "has to be between the physician and the child." Even proponents say that family-centered treatment isn't right for everyone: families where there is violence, sexual abuse, alcoholism or drug addiction aren't good candidates. But several studies both in clinics at the Maudsley Hospital and at the University of Chicago show promising results: five years after treatment, more than 70 percent of patients recover using the family-centered method, compared with 50 percent who recover by themselves or using the old approaches. Currently, a large-scale NIH study of the Maudsley approach is underway.

Mental-health specialists say the success of the family-centered approach is finally putting the old stigmas to rest. "An 8-year-old with anorexia isn't in a flight from maturity," says Dr. Julie O'Toole, medical director of the Kartini Clinic in Portland, Ore., a family-friendly eating-disorder clinic. "These young patients are fully in childhood." Most young anorexics, O'Toole says, have wonderful, thoughtful, terribly worried parents. These days, when a desperately sick child enters the Kartini Clinic, O'Toole tries to set parents straight. "I tell them it's a brain disorder. Children don't choose to have it and parents don't cause it." Then she gives the parents a little pep talk. She reminds them that mothers were once blamed for causing schizophrenia and autism until that so-called science was debunked. And that the same will soon be true for anorexia. At the conclusion of O'Toole's speech, she says, parents often weep.

Ironically, family dinners are one of the best ways to prevent a vulnerable child from becoming anorexic. Too often, dinner is eaten in the back seat of an SUV on the way to soccer practice. Parents who eat regular, balanced meals with their children model good eating practices. Family dinners also help parents spot any changes in their child's eating habits. Dieting, says Dr. Craig Johnson, director of the eating-disorder program at Laureate Psychiatric Hospital in Tulsa, triggers complex neurobiological reactions. If you have anorexia in the family and your 11-year-old tells you she's about to go on a diet and is thinking about joining the track team, says Johnson, "you want to be very careful about how you approach her request." For some kids, innocent-seeming behavior carries enormous risks.

Children predisposed to eating disorders are uniquely sensitive to media messages about dieting and health. And their interpretation can be starkly literal. When Ignatius Lau of Portland, Ore., was 11 years old, he decided that 140 pounds was too much for his 5-foot-2 frame. He had heard that oils and carbohydrates were fattening, so he became obsessed with food labels, cutting out all fats and almost all carbs. He lost 32 pounds in six months and ended up in a local hospital. "I told myself I was eating healthier," Ignatius says. He recovered, but for the next three years suffered frequent relapses. "I'd lose weight again and it would trigger some of my old behaviors, like reading food labels," he says. These days he knows what healthy feels like. Ignatius, now 17, is 5 feet 11, 180 pounds, and plays basketball.

Back in Richmond, Va., Emily Krudys says her family has changed. For two months Katherine stayed at the Omaha Children's Hospital, and slowly gained weight. Emily stayed nearby--attending the weekly therapy sessions designed to help integrate her into Katherine's treatment. After Katherine returned home, Emily home-schooled her while she regained her strength. This fall, Katherine entered sixth grade. She's got the pony, and she's become an avid horsewoman, sometimes riding five or six times a week. She's still slight, but she's gaining weight normally by eating three meals and three or four snacks a day. But the anxiety still lingers. When Katherine says she's hungry, Emily has been known to drop everything and whip up a three-course meal. The other day she was startled to see her daughter spreading sour cream on her potato. "I thought, 'My God, that's how regular kids eat all the time'," she recalls. Then she realized that her daughter was well on the way to becoming one of those kids.