Lost childhood

For most of the past three years, Laura Gillis has gotten only fleeting glimpses of her loving, rambunctious 9-year-old son, Daniel, the kid who is always ready for a hug, to stage a solo singing performance, or to demonstrate his newest wrestling move.

But like one of his favorite action figures, the Hulk, Daniel can suddenly transform into a different person. That Daniel gets nervous and confused; he hallucinates; he acts suicidal or threatens others; he feels very afraid.

"When it happens, the look on his face is -- it's like something is happening to you and you don't know what's going on," Gillis said.

This summer, after three hospitalizations and a series of misdiagnoses, Gillis finally learned what was going on with Daniel: He has bipolar disorder, a disease in which patients can experience both manic episodes of boundless energy and listless bouts of depression.

It's a disease that's hard to diagnose, especially in children, and some doctors believe that unrecognized bipolar disorder could at least partly explain the suicidal thoughts or behavior that occur in up to 4 percent of children taking antidepressants -- a side effect that prompted the US Food and Drug Administration last month to put its strictest warning on antidepressants.

Underlying bipolar disorder "is one of the leading potential explanations or mechanisms for how suicidality could be prompted by antidepressants," said Dr. Philip S. Wang, a psychiatrist and epidemiologist at Brigham and Women's Hospital and a member of an FDA advisory panel that recommended the "black box" warnings.

Patients known to have bipolar disorder are not supposed to be prescribed antidepressants alone, because the drugs can "activate" bipolar patients, driving them into a reckless, energetic state in which they may endanger themselves or others. The drugs can cause patients to experience mania at a younger age or more frequently, psychiatrists say. Or, they may cause patients to cycle rapidly between depression and mania, putting them at risk of using their unbounded energy to act on low feelings.

"You get mixed states where you have depressive symptoms and manic symptoms at the same time. Instead of someone being sad, down, blue, no energy, no interests, they are sad, down, blue, with energy, agitation, racing thoughts," said Dr. Nassir Ghaemi, director of the bipolar disorder research program at Cambridge Health Alliance.

Studies show that at least 1 percent of the population has bipolar disorder, and some psychiatrists say the numbers may be much higher because the illness is often mistaken for depression or other psychiatric disorders. That's because depressive symptoms often show up years before the first manic episode, and in children, doctors disagree about bipolar disorder's symptoms.

Some psychiatrists, including Dr. David Healy, the British author of "Let Them Eat Prozac," think that bipolar disorder doesn't occur before adolescence. He disagrees that unrecognized bipolar disorder leads to suicidality in children taking antidepressants and believes the issue is being used to distract from the suicidal side effects of the drugs. "I think this is a particularly delusional belief, that child psychiatrists in the US have," he said, noting that people who don't have depression are prescribed the drugs for various reasons, and have become suicidal on the drugs, too.

There is not enough data to make a conclusive link between bipolar children taking antidepressants and suicidal behavior, but supporters of the idea point to several recent reports.

In January, the Child and Adolescent Bipolar Foundation surveyed its members and found that among 2,534 respondents, 89 percent of families had children with bipolar disorder who were initially treated with antidepressants. Nearly half of the families reported that their children began acting suicidal after taking the drugs, and 529 families were convinced that their children became suicidal because of the drugs.

Dr. Demitri Papolos, author of "The Bipolar Child," recently completed an unpublished analysis of 134 bipolar children who were originally misdiagnosed with depression, attention-deficit hyperactivity disorder, or obsessive-compulsive disorder and were prescribed antidepressants. He said he was alarmed to find that 79 percent of the children had symptoms of mania. "Not that [antidepressants] caused the condition, but that if you have a vulnerability or a risk for the illness, you may be induced," Papolos said.

Gillis said her son experienced his first severe manic episode within days of starting to take an antidepressant.

A little over two years ago, Daniel was beginning to shuffle among psychiatrists, and the different drugs they suggested -- for what they variously diagnosed as anxiety, attention problems, depression, and post-traumatic stress disorder -- were not helping. Gillis had asked many times whether a history of bipolar disorder in Daniel's family and what seemed to be symptoms of mania could mean that he had the disease. But doctors and social workers told her no, it wasn't a children's disease, and gave him Zoloft, an antidepressant.

Within days, she said, Daniel began to suffer from visual and auditory hallucinations, causing his first psychiatric hospitalization -- when he was 6 years old. Daniel -- whose last name is different from his mother's and is not used in this article at her request -- was taken off Zoloft. But the hallucinations and mania returned.

This summer, Daniel finally came home with a bipolar diagnosis, and mood-stabilizing drugs that bring out the kid Gillis had been searching for these past three years.

Delays in getting a bipolar diagnosis seem to be the norm. A study published in the Journal of Clinical Psychiatry last year analyzed surveys completed by 600 bipolar patients -- about one-third of whom began having symptoms as minors -- and found that 69 percent were initially misdiagnosed, most often with depression. The misdiagnosed patients saw an average of four physicians before getting the right diagnosis, and a third of them waited 10 or more years for correct treatment.

Part of the problem, say some psychiatrists, is that there is no standard description of the disease in children. The psychiatrist's bible -- the Diagnostic and Statistical Manual of Mental Disorders -- defines bipolar disorder based on research studies in adults, but psychiatrists argue that the disease has different symptoms in preschoolers and grade-school kids, since their brains are still developing.

Dr. Joseph Biederman, chief of pediatric psychopharmacology at Massachusetts General Hospital, has pioneered research to describe the illness in children, showing bipolar children are extremely aggressive, euphoric, moody, irrational, and grandiose; and rapidly switch between depression and mania, sometimes within the same day.

But his findings are controversial, because he has diagnosed preschool-age children with bipolar disorder and these symptoms seem in milder cases to meld with normal childhood behaviors, leaving children at risk for being overdiagnosed.

For Gillis and her son, the costs of his disease and the delayed diagnosis have been enormous: lost sleep, lost days of work and school, large hospital bills, and social isolation.

She has lost her job three times, because she missed so much work while visiting her son in the hospital and taking him to doctors. Friends stopped calling, which she attributes to the stigma of mental illness and a lack of understanding that the disease, not bad parenting, has led to Daniel's troubles. Between caring for Daniel and her infant, Aiden, Gillis is housebound.

"I have a lot of friends," she said. "But I've never felt more alone in my life."

Carolyn Johnson can be reached at cjohnson@globe.com.