Feb. 25, 2012— -- Sophie started starving herself in kindergarten, giving up sweets at first, then taking smaller and smaller portions of food. She exercised compulsively on the monkey bars.
But her parents had no idea she was developing anorexia nervosa because the active girl's height and weight looked normal on the pediatrician's growth chart.
"She was slim, but not skeletal," said her mother Anne, a college professor from Washington State, who did not want to use real names to protect their privacy.
Sophie complained of being dizzy, having "itchy skin" and constipation, all symptoms of malnutrition. She later confessed that she had been throwing out her school snacks and lunches.
And one night when her mother was tucking her into bed, she blurted out, "Mommy, I have a problem … I am hungry all the time and I can't eat," remembers Anne. "A voice in my head is telling me not to eat."
When Sophie was finally diagnosed in first grade, she hadn't gained a pound for 10 months and had dropped from the 60th to the 19th percentile on the weight charts.
More than 10 million Americans have eating disorders, which have a 10 percent mortality rate, the highest of any psychiatric illness, according to the National Institute of Mental Health. Look for these upcoming reports throughout Eating Disorders Awareness Week: ABC News will examine why men have a harder time getting an anorexia diagnosis, and we'll give a revealing report on the rise of thinspo (short for thinspiration), a growing web-based movement that promotes anorexia as a lifestyle choice rather than an illness.
Anorexia nervosa is a chronic brain disorder with no known causes. It is rare among young children -- but the number of hospitalizations is on the rise. According to the Agency for Healthcare Research and Quality, the rate jumped 72 percent between 1999 and 2009, the last year for which there are statistics.
Highly inheritable, it is estimated that 56 to 70 percent of those who are anorexic have a family member with an eating disorder or a co-morbidity like anxiety, according to 1to the Kartini Clinic, a Portland, Ore., facility that exclusively treats children and young adults with eating disorders.
Sophie was adopted, so there was no family medical history to turn to.
"Her memories are that her teacher had told her she had to eat healthy -- and she's the kind of kid who reads between the lines of all the rules and follows them to the letter better than anyone else," said her mother. "She is a perfectionist and has always been an anxious kid."
"No one knows what triggers it," said Dr. Julie O'Toole, founder and medical director of the Kartini Clinic. "The science isn't there yet."
"But it's not caused by the media or by pressure to be thin, though people like to blame that," she said. "Parents don't cause eating disorders and children don't choose to have them."
"You can't cause it even if you wanted to," said O'Toole. "It has nothing to do with fashion magazines. We see farm kids, religiously-raised kids who are homeschooled and have no access to television ... who developed anorexia nervosa."
The disorder affects girls 10 times more often than boys in all age groups, but the true numbers may not be known because boys "conceal their illness better," said O'Toole, who is a pediatrician.
Early onset anorexia, under the age of 12, can look different from the adult illness.
"In the classic adult form, they are afraid of getting fat and believe themselves to be fat and quit eating on that basis," she said. "But there are some children 10 and under who refuse to eat and can't tell you why. And it's not kids who never did eat much or picky eaters -- that's a whole different field."
"Out of normal childhood, they begin eating less and less," she said. Children don't have the "sophistication" to plan a diet or consciously cut back on food.
Weight restoration is the key to treatment. "If you do not do this, you do nothing," said O'Toole. Every organ is affected by starvation, including the brain; children who are anorexic show slow cognition.
Anne was desperate, so she went online and found the "Magic Plate," a term used to describe how parents approach feeding their child -- and the website for the organization F.E.A.S.T. (Families Empowered and Supporting Treatment of Eating Disorders).
She read voraciously and a F.E.A.S.T. member directed the family to Evidence Based Treatment Centers of Seattle, where Sophie eventually got help.
O'Toole and other experts believe that parents are "not part of the problem, but part of the solution," and teach them how to "re-feed" their children.
"You have to bring them back to full health or the symptoms –-- fear of fat and food -- won't go away," said Laura Collins, F.E.A.S.T. founder and author of the book, "Eating With Your Anorexic."
Her daughter, 25, has been well for 10 years after a struggle with anorexia. "She was severely ill, but now she is independent and happy," said Collins.
In family-based therapy, Anne learned techniques to "take responsibility" for Sophie's eating, plating her foods and snacks and demanding that she eat before being allowed to play or do activities she enjoyed.
"We created an environment where eating was required," said Anne. "As their weight goes up, they start to get better."
She has learned how to deal with the behaviors that keep children from eating. Counselors helped address Sophie's anxiety with cognitive behavior therapy; she takes antidepressants for anxiety.
Her family later learned she had rituals from mild obsessive-compulsive disorder. "She folded the blanket on her bed just so … or she thought I would die," said Anne.
Anorexia at 10 and Still Struggling at 25
The key to successful treatment is recognizing the symptoms early, according to Lynn Grefe, founder and director of the New York-based National Eating Disorders Association.
"The longer the person has an eating disorder, the harder the recovery," she said.
The illness is biological, but the triggers are social: trauma, divorce, even a throw-away comment like, "Aren't you a chubby little girl," said Grefe. "You are born with the gun, but life is the trigger -- and there are a lot of them."
When children are identified early, there is hope, she said. "I see children 11, 12, 13 and their parents still have control and can make decisions about their treatment and are not scared to take action. There are wonderful results."
But Grefe said she works with women in their 30s who are in and out of treatment. "It's a way of life," she said. "They are just surviving."
Such was the case with Mary Polan, who was diagnosed with an eating disorder at the age of 10 when her pediatrician noticed she wasn't gaining weight.
"We thought it was a phase she was going through," said her father, Mike Polan, a physical education teacher from Westhampton, N.Y. "It was Lent and people were giving up things and she gave up junk food -- and it took off from there."
Mary, like other children was a "hard-wired perfectionist," said her father. "But there was nothing we could put our finger on."
Now 21, Mary has had several hospitalizations and has been in and out of treatment centers. At her worst in her teens, she weighed "in the high 80s" at 5-feet 8-inches tall, according to her father. "We tried everything we could as parents," he said. "You put the blame on yourself."
At one point she was on an IV and doctors "tried to put a tube down her nose," said her father, still shaken by the trauma. Polan wants others to know the seriousness of the illness.
"They can actually die from this," he said. "The key is early intervention -- the longer it takes to treat it, the worse it gets."
Most recently, Mary took a medical leave from college and will go back out to a treatment center in California, where she had done well previously. "It's difficult -- she's 3,000 miles away," said Polan. "But as a parent, you beg, borrow and steal the money if it will fix it."
Sophie's mother Anne knows the feeling of desperation. But today, at 8, her daughter is doing well. The physical symptoms of malnourishment are gone.
"She's got a little padding so when she got the stomach flu you don't have to worry that she'll lose a couple of pounds and fall down the rabbit hole again," said her mother. "She runs and plays, but the compulsive exercise is gone."
Sophie still has supervised eating, even at school where aides oversee her intake. Without monitoring, Sophie slips back into food restricting.
Pediatrician O'Toole recommends keeping children supervised for years and not giving back eating control. "It doesn't have to be invasive," said Anne, "but you do it for the long haul."
It's hard for a parent not to blame themselves, said Anne. "I didn't think she looked skinnier than the other kids and it just wasn't on our radar if she hadn't told me. … But she knew she was sick."
But O'Toole said there is reason for hope, and neither parents nor children should be ashamed of their eating disorder.
"The more you understand about anorexia, the more you understand it conceptually as a brain disorder, and that is empowering," she said. "It's not a character flaw or a parenting issue or dysfunctional relationship. It's the luck of the draw."
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