Parents struggle with decision to medicate bipolar kids

• 1 of 10 children lives with serious mental or emotional disorder

Sarah McQuilkin says she knew something was wrong with her adopted daughter when she was 2. Now, at 7, Sarita says, "Mommy, the world will be better off without me."

A suicidal child sounds impossible, but for kids with bipolar disorder, it's a grim reality. "One out of five bipolars will commit suicide," says Karen Swartz, a psychiatrist and director of Johns Hopkins Mood Disorders Center in Baltimore.

"Without treatment, I see my daughter as killing herself," says a weeping McQuilkin, 60.

Parents slather sunblock on their kids, hold them tight when they get flu shots, give them medicine when they're sick. Should mental illness be treated with drugs, too? As more kids are diagnosed with bipolar disorder at earlier ages, parents wonder whether psychiatric drugs such as Depakote and lithium are really the answer — and how they might affect their child's growth and development.

Treating a child with heavy medication has far-reaching implications, and it's not always clear at young ages whether a child's outbursts are early signs of bipolar disease.

"Doctors have to be able to make as accurate a diagnosis as possible," says Gabrielle Carlson, professor of psychiatry and pediatrics at Stony Brook (N.Y.) University School of Medicine. "Bipolar is a lifelong disease, and you don't want to diagnose it too early and be wrong, or miss something and be too late."

One early sign of bipolar disorder in children is lashing out, but not every child who lashes out is bipolar. Last week after 10 years of debate, psychiatrists approved updates to their diagnostic manual of mental illnesses, including the addition of Disruptive Mood Dysregulation Disorder, describing children who have outbursts three or more times a week. The new term aims to address concerns about overdiagnosis and overmedication of bipolar disorder in children, and gives psychiatrists a way to differentiate between bipolar and other explosive outbursts.

"I understand the reason why a parent would be afraid to medicate their child. There are often serious and unknown side-effects to consider," says Janet Wozniak, psychiatrist at Harvard Medical School. "But parents also need to consider that there may be a downside to not medicating and missing an opportunity to interrupt the course of a serious illness. ... Not medicating may also carry with it risks."

Bipolar disease is a severe mood disorder bookended by both mania and depression, known to emerge in adolescence and early adulthood. About 2% of children and teens have been diagnosed. But a study published Dec. 3 in Archives of Pediatrics and Adolescent Medicine found just 14% of teens with any mental disorder are on medication.

"If someone has epilepsy or asthma, then there's no question as to whether to treat with medication, no matter how young," says Robert M. Post, professor of psychiatry at George Washington University School of Medicine in Washington, D.C. "But for a child with bipolar disease, there's a trepidation to treat with medicine. It's a potentially lethal disease, and the medicine that balances the risks is often overlooked."

"Bipolar disease is treatable, that's the most important thing," says Kay Redfield Jamison, a professor of psychiatry at John Hopkins School of Medicine. "I always tell young people who are at the beginning of treatment that bipolar is bad, but now is a great time to get it."

According to the National Institute of Mental Health, 5.7 million people struggle with bipolar disorder; studies have found 50% start showing signs before the age of 19. But many lead fully functional lives. Jamison is one — her memoir, An Unquiet Mind, describes her own battle with bipolar disease.

Just as doctors routinely use a combination of therapies to treat AIDS or cancer, mental health professionals say a combination of medications and one-on-one therapy works best in bipolar disorder, but often isn't used, "either because those services aren't available or people don't know about them," says Post. Without treatment, kids can have a hard time focusing in school and are more prone to outbursts. According to the National Alliance on Mental Illness (NAMI), half of students with mental illness ages 14 and older drop out of high school, the highest rate of other groups with disabilities. "The illness in a child can severely impair a child's ability to socialize and get through school," says Post.

Karrey Tweten of North Mankato, Minn., saw that in her daughter. When Shelby was in fourth grade, she started lashing out. "By junior high, she started acting really inappropriately and aggressively," Tweten says.

She was bullied in middle school, which "was horrible, especially from the girls," says Shelby Tweten, now 18. "When it got to be bad, I'd listen to music and sing." Tweten tried to translate her coping mechanism to a full-time gig by auditioning for American Idol Season 11.

"Shelby doesn't always like the side effects of her meds, like grogginess, but I can tell when she's revving up. ... The medication calms her," says her mother. "Medication is important; you can prevent big events."

As with any drugs, bipolar disorder meds have side-effects. They vary from grogginess, weight gain and polycystic ovary syndrome to tardive dyskinesia, in which the tongue thrusts out uncontrollably.

"There's no free lunch with medication," says Carlson. "But if an eye tic is what a child gets vs. getting kicked out of school because his behavior is unmanageable, then it's worth the risk."

Nanci Schiman, program director of The Balanced Mind Foundation in Chicago, an organization that offers information and support for parents of bipolar children and teens, has two daughters with bipolar disorder, and recounts wildly different diagnoses. "There are just too few mental health professionals trained to spot bipolar in kids," she says. "The question (of whether) we're overmedicating our kids is a moot point if they're not getting the right medication. You keep throwing meds at them and then you don't know whether to back away, what kind of consequences that will have. I cringe when I remember what we went through."

Finding the right drugs and dosage relies on the expertise of mental health professionals. "Before medicating a child, you have to make an accurate diagnosis," says Carlson. "Misdiagnosis is common. That's really the controversy."

Bipolar disorder also may show up differently in children than it does in adults. Kids generally suffer from rapid cycling, swerving from mania to depression in a matter of hours. In adults and teens, it can be months, even years, between episodes.

"The reason we have emotions is a way to organize our bodies to react to the environment appropriately," says Ellen Leibenluft, chief of Bipolar Spectrum Disorders at the National Institute of Mental Health. "Bipolar disorder happens when that circuitry goes awry."

People with a family history of bipolar disorder are four to six more times likely to develop it. "If you have a genetic history, especially, become an expert," says Tweten. "Know your safe places, like I have a place where I'll take Shelby if I think she needs a break, and it helps shield my two younger sons from her mood swings."

What if a diagnosis is wrong? The wrong medication can trigger bipolar disorder, too, according to Ken Duckworth, medical director of the National Alliance on Mental Illness. ADHD and bipolar disorder in the manic state look very similar, but medication for ADHD can trigger mania in a bipolar person.

So what can parents do to help spare their children from suffering?

The best medicine for kids is a strong support system of family, teachers and doctors, say experts.

McQuilkin, who knew Sarita had a family history of bipolar disorder when she adopted her, says she's kept a journal, "documenting all of my daughter's behavior, the rages, the depression, everything."

"We, as parents, have to be our kids' biggest advocates. We know them best."