News Article

New help for eating disorders
By Susan Stevens Daily Herald Staff Writer
Posted Monday, April 19, 2004

On spring break in Fort Lauderdale, Fla., college student Julie Penn felt her body shutting down.

It was supposed to be her last semester of college. But years of skipping meals and purging had wounded her body, and her heart rate was dangerously low. She felt miserable.

"I got home and I just knew I couldn't go back," she said. "I just felt like my heart was going to stop."

Penn, 22, of Wheaton, checked into an inpatient eating disorders ward at Linden Oaks Hospital in Naperville, where doctors helped stabilize her heart rate, rebalance her electrolytes and break bad nutritional habits.

The specialized overnight care is what eating disorder doctors often recommend for their sickest patients, who may suffer from severe psychological and life-threatening medical problems caused by malnutrition.

Lack of insurance coverage for extended hospital stays, however, has prompted many facilities to close those units.

At least two Chicago-area hospitals are bucking that trend. Linden Oaks, which is owned by Edward Hospital, expanded its eating disorders program in February, taking over a suite of rooms in the psychiatric hospital for a unit devoted to bulimia and anorexia. Administrators say they needed the specialized inpatient unit to complement the day program.

In Hoffman Estates, Alexian Brothers Behavioral Health Hospital expanded its eating disorders program in 1999 and saw an increase in patients. The inpatient census grew large enough that doctors began moving patients to a specialized unit last week.

"Our program is three times bigger than we expected it to be," said Dr. John Levitt, director of the eating disorders program at Alexian Brothers. "We're getting kids down to the age of 7 in our program. It's a very serious problem."

The higher number of people seeking treatment does not necessarily mean more people are suffering from eating disorders. Nationwide, about 1 percent of women suffer from anorexia nervosa and about 5 percent have bulimia nervosa, and those numbers have remained fairly constant.

But more cases are being reported in men, ethnic minorities and young children. And while the disorders usually begin in the teen years, the long duration of these illnesses means many victims are middle-aged or older.

"There is a very high relapse rate for eating disorders," said Dr. Maria Rago, clinical director of Linden Oaks' program. "It's a terrible problem. Many people who have an eating disorder have it for four years, 10 years, 20 years."

Penn has battled bulimia for years. She began dieting in high school at Wheaton Warrenville South, when she says "no one was eating."

A typical lunch was 35-calorie bread with fat-free meat. Penn played tennis, and she used exercise to burn off even more calories.

"Everything was fat-free, Equal, diet soda," Penn said. "That was just the way I ate."

When she left for the University of Louisville, the added stress of leaving home and playing college tennis magnified her problem. She would skip breakfast and lunch. By dinner, she was starving. She'd eat something, feel guilty and deliberately throw it up.

In her first year at college, Penn said she purged for three months before her roommate noticed.

"I wanted to be the stick figure I was before, and my body wasn't supposed to be doing that," she said. "I just kind of hit rock bottom."

Every pat of butter

Unlike other psychiatric patients, who typically are motivated to get well, anorexics and bulimics are psychologically affected by the disease to believe they must get thinner. That requires a different kind of monitoring than patients on a general psychiatric unit.

"They can trick anyone," Rago said. "You can count on it, because it's part of the disorder. They will trick the nurses that they already had a sandwich, anything to keep from eating. They'll exercise in the bathroom. They'll purge in the bathroom."

On Linden Oaks' inpatient eating disorders ward, nurses hand out compliments to patients for not exercising. They lock the bathrooms for an hour after meals to curtail vomiting.

At mealtimes, plates are checked, and patients must eat everything, down to the last bit of butter. Some patients will also be given supplements or fed through a tube if their bodies cannot metabolize food properly.

Patients are treated for medical issues, such as the heart abnormalities that can accompany eating disorders, and they attend therapy sessions on everything from relationships to forbidden foods.

"There's so many aspects when it comes to eating disorders - the self-esteem, exercise, nutrition," said Bev Watson, a nurse at Linden Oaks. "A lot of times they might suffer from depression, let alone trauma or abuse."

Linden Oaks' philosophy is to help patients get past destructive self-defenses, Rago said.

At a stable in Elgin, patients work together to guide horses through tasks, such as walking in a circle or wearing a bridle. The equine therapy program helps therapists break past patients' intellectual defenses, Rago said.

"We want to bring out that frustration," she said. "We want to deal with those feelings they might not know how to deal with."

Last month, a group of patients went grocery shopping, cooked a meal and served it to clients at a homeless shelter in Naperville.

The patients could no longer justify throwing up food when they encountered people who were hungry. One girl, overcome, started crying during dinner. A homeless man comforted her.

"It was like a miracle," Rago said. "They had so much realization about the meaning of their lives. It didn't cure them, but it sure helps. The motivation factor is one of the most difficult problems they have."

Getting coverage

Both day and inpatient treatment is expensive, however. Inpatient programs can cost $30,000 a month, and many insurance companies restrict the number of days they will cover.

Doctors would prefer to bring patients up to at least 90 percent of their target weight. For a 5-foot, 5-inch woman, that would be about 110 pounds, Levitt said.

"Most insurance companies don't let you get anywhere near that," Levitt said. "A lot of the relapse rates for anorexia are because we don't get them to a high enough weight; we don't keep them long enough to stabilize their weight."

Levitt traveled to Washington, D.C., last week to speak to members of Congress about the need for parity laws - requirements that insurance companies cover mental illnesses, including eating disorders, at the same level as medical problems.

Opponents argue such mandates would increase the cost of health insurance and force reductions in coverage.

Some states have passed such legislation. In Illinois, the General Assembly approved a law requiring equal mental health coverage, but the bill does not specifically mention anorexia or bulimia.

"It's an ongoing battle to try to get insurance coverage for people," said Christopher Athas, a vice president of the Highland Park-based National Association of Anorexia Nervosa and Associated Disorders, an advocacy group.

Levitt said the public is becoming more aware of the dangers of all eating problems, from childhood obesity and diabetes to anorexia and bulimia. And some hospitals are responding with more programs, he said.

Linden Oaks Hospital President Lou Mastro said parents, coaches and teachers asked for a larger eating disorders program. The hospital is planning to open a long-term residential facility for eating disorders in the next year, as well as an inpatient obesity program.

Earlier this month, roughly 150 people gathered at Linden Oaks for a conference on eating disorders and a candlelight vigil.

"This is such a terrible, terrible disease," Mastro said. "I think people feel so hopeless. It was just so nice to hear people who recovered share their experience, and see that gleam in other people's eyes, 'Oh if it worked for her it will work for me.' It was amazing."

Motivated to recover

Penn knew she had an eating disorder. But it wasn't until her doctors told her she had damaged her heart that the illness registered.

"That was the scariest thing I've ever heard," she said.

Doctors diagnosed her as a restrictive bulimic, or someone who limits her food intake but also purges. After a week as an inpatient, Penn moved into Linden Oaks' day program, and she says she feels healthy again.

For the first time, she says, she realized how much food normal people eat.

"Even in the first two days I was here, I could feel my body working again," she said. "I could think straight and I was happier and my skin was healthier."

Penn still looks in the mirror too often and struggles with mental distortions of her body. But she is motivated to recover; the disorder has already hurt her relationships, delayed her education and made the past four years of her life miserable.

"I have too much I want to do with my life to want to go on that way," she said. "If I can get over it, life is going to be so much better."

Help: Insurance coverage can cut treatment short