Mood-altering drugs such as Risperdal and Zyprexa can help kids with conditions such as bipolar disorder function and other mental illnesses. But intense hunger is a side effect that puts them at risk for heart attack, stroke, diabetes — and continued social ostracism.
CHICAGO — The same drug that helped Rachel Mason graduate eighth grade by controlling her bipolar disorder caused her to weigh more than most girls at the ceremony.
Under Rachel’s freckled skin, the drug that eased her rages also sparked insatiable hunger. By the time she slipped into a white-flowered red skirt for the event, the teen who stands only a few inches taller than 5 feet weighed 243 pounds.
“It’s in my head,” said Rachel, now a 14-year-old high-school freshman in Mount Pulaski, Ill. “In my stomach, I usually don’t want to eat anything.”
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Apprehensive about severe side effects associated with the first generation of drugs approved to treat psychosis — including tremors, muscle contractions and involuntary movements that can cause disfigurement — doctors have embraced a new group of drugs during the past decade, among them Risperdal and Zyprexa.
As time passes, however, adverse effects also have emerged for these new drugs — including a ravenous hunger that makes children badly overweight and susceptible to future diabetes.
The dramatic weight gain can be emotionally difficult for teens at a time when social pressures are especially intense. Doctors said the weight gain can be hardest on girls who already struggle with body image. Some refuse to take a drug that causes weight gain, even when it works.
Although the U.S. Food and Drug Administration has approved these second-generation anti-psychotic drugs to treat mentally ill adults, the agency has not agreed to their use in youths. Doctors prescribe the drugs based on clinical trials, experience and limited data, and doing so is not illegal.
Some of these newer drugs have other side effects as well — one drug causes a decrease in white blood cells, for example; others cause tremors, sedation and low blood pressure.
This year the FDA added a warning label about increased diabetes risk to the anti-psychotic drugs, which doctors find also are connected with increased cholesterol and triglyceride levels.
Estimates of how many children are taking these drugs are hard to come by, but one national study of nearly 1 million youth published last year showed the percentage treated with anti-psychotic drugs doubled in a managed-care population and tripled in the Medicaid population from 1987 to 1996.
“It’s a huge problem. All of these medications right now are double-edged swords,” said Dr. Michael Naylor, University of Illinois at Chicago director of child psychiatry. “You’re kind of left with a dilemma: Do I choose a medication that can harm me or an illness that can harm me? It’s a terrible choice.”
Rachel’s parents, Stephen and Michelle Mason, knew early on that something was wrong. In second grade, Rachel would crawl under her desk at school. She’d yell and scream, chew on erasers, eat paper. Other children were afraid.
After her rages, Rachel never remembered what happened.
Rachel saw four psychiatrists in six months and was diagnosed with bipolar disorder at age 8. She took different medications, but none worked as well as the Zyprexa she started in sixth grade.
While Rachel had always been at the higher end of the weight scale compared with her peers, her body soon ballooned out of control. She never felt full. Rachel could eat macaroni and cheese after school, a full dinner and still snack later. In June she weighed 253 pounds.
“She’d eat and eat and eat,” her mother said. “It was an all-of-the-time thing. She’d get home and it was like ‘I need this, I need that,’ and she’d shovel it in.”
Dr. Christoph Correll, a research psychiatrist at The Zucker Hillside Hospital in Glenn Oaks, N.Y., has followed 360 children ages 4 to 19 starting on second-generation anti-psychotic drugs.
Interim results found children gained mostly fat, some of it deposited on their abdomens. With many putting on more than 7 percent of their baseline body weight, they were also at risk for future heart attack, stroke and diabetes.
“The gateway to these serious complications in the future is the weight gain,” Correll said. “The numbers we found were very surprising and sobering.”
A 12-week study of 50 youth published in the 2002 Journal of the American Academy of Child and Adolescent Psychiatry found Zyprexa and Risperdal were associated with “extreme weight gain in adolescents, much higher than that reported in adults.”
Experts say the increased weight can not only affect health but also perpetuate depression. “Oh gosh, it puts their self-esteem to the floor,” said Dr. Louis Kraus, Rush University Medical Center chief of child and adolescent psychiatry.
Pharmaceutical companies, some of whom have been criticized for minimizing these drugs’ negative effects, say they are working to eliminate the weight-gain problem.
Eli Lilly and Co., which makes Zyprexa, is looking into which patients gain the most weight, said spokeswoman Marni Lemons.
“It’s possible that a receptor that improves your functioning [also] improves your appetite,” Lemons said. “Is it possible to create a drug that doesn’t have weight gain as a side effect? We don’t know. We have researchers looking into that.”
Doctors also say they worry over how the drugs work in growing bodies since long-term effects have not been extensively studied in children.
“We are learning about the safety issues as we are using the drugs in children,” according to Dr. Julie Zito, a University of Maryland pharmacy and psychiatry associate professor who led the study showing the soaring use of these drugs in youth.
“In my mind, there is not sufficient data that establishes them as effective and safe in children for long-term use.”
The FDA has requested that five of these drugs be evaluated in children, a spokesman said.
In the meantime, parents like Michelle Mason struggle to balance the drugs’ risk with their control over paranoia, delusions, aggression, and, in Rachel’s case, violent rages.
These often-destructive symptoms cannot be left untreated, experts say.
“If a child is psychotic they can’t be in school, OK?” said Suzanne Andriukaitis, executive director of the National Alliance for the Mentally Ill in Chicago. “Overweight kids can be in school and will have plenty of company.”
On Zyprexa, Rachel was calm enough to make friends — but she also felt alienated because she was larger than her peers.
She felt most like an outsider in seventh grade, when athletes ruled the popular crowd. Rachel tried out for the cheerleading squad but didn’t make it.
She ate by herself at lunch as some peers called her names, making her cry.
By eighth grade, Rachel had learned to stay away from them and found friends like Becky Bradesku, a year younger, whom Rachel met in church. They ate pizza, collected stationery. Becky, attractive and thin, defended Rachel at school.
Once, when Rachel wished she were thin like Becky, the girl reminded Rachel that God made her.
“There’s nothing wrong with that,” Becky said.
In May, Rachel finally graduated from grammar school.
Waiting backstage among peers, her place on the edge of the social hemisphere became evident — seldom invited into pictures, sitting off alone as girls examined one another, handing out compliments that others did not always return.
During the ceremony, a speaker noted that years from now it would not matter how popular, pretty or thin they all were.
In June, Rachel stopped taking Zyprexa and began Risperdal. She had gained 50 pounds since the previous August, and Rachel’s psychiatrist feared she would be at risk for diabetes and teasing at school if she stayed on the drug.
On the new drug, Rachel has been in a good mood, but sometimes she still can’t stop eating, and Michelle Mason worries.
“I would like to see her lose weight, not just for her looks but for her health,” the mother said.
Rachel’s weight peaked in August at 266 pounds.
That same month, she started high school — the “new world” she had been hoping for.
She became an officer in her first club — the Family, Career and Community Leaders of America. She is getting good grades and has served as greeter for visiting volleyball teams.
On Risperdal, Rachel’s mood is better even than her mother had anticipated. And since August, she has lost 2 pounds.
Best of all, Rachel has found new friends — not cheerleaders, but girls who accept her.