Fighting Anorexia: No One to Blame
The age of their youngest patients has slipped to 9 years old, and doctors have begun to research the roots of this disease. Anorexia is probably hard-wired, the new thinking goes, and the best treatment is a family affair.
By Peg Tyre
Dec. 5, 2005 issue - 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 ninth grader 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.
With Karen Springen, Ellise Pierce, Joan Raymond and Dirk Johnson
© 2005 Newsweek, Inc.
© 2005 MSNBC.com
The strange thing is that Newsweek says that over half of anorexics are not the stereotypical anorexic: which denotes white girl, upper class... they're reporting that about half of anorexics are either minorities, middle class, or male... interesting. Also, the fact that kids battle with this disease: while their bodies want to grow up and develop, their conscience is telling them to starve themselves.. it's an odd contradiction... I'm glad I haven't had to deal with this, but I have struggled with self-mutilation so I kind of understand the whole thing.
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