The most controversial disorder
Like Aaron Webster, Rebecca Riley was diagnosed with early-onset bipolar disorder, but she was put on three powerful medications when she was 2. Last December Rebecca died of an overdose at her Hull, Massachusetts, home. She was 4.
Rebecca's death ignited a debate over whether it was possible to diagnose bipolar disorder in younger children. (The number of children and teenagers treated for the disorder has skyrocketed; the most recent study estimated that the number of diagnoses went from 20,000 in 1994 to 800,000 in 2003.) But the American Academy of Child and Adolescent Psychiatry (AACAP) concluded that it wasn't possible for kids under 6 to be diagnosed bipolar -- and it should be a diagnosis of last resort for those under 10.
That's why Kendall Boger now has a diagnosis of "severe mood disorder, not otherwise specified." It is the doctor's way of describing the symptoms of bipolar disorder without giving it the name. For the past year, Kendall has had auditory hallucinations -- voices in her head that she calls her "fairies." (She once told her mom that she wanted to cut a door in her forehead to let them out.) She also suffers from night terrors, as well as suicidal thoughts: "She tells me that she wants to die, that she can't live this life anymore," says her mom, Claudine Boger, whose mother was also bipolar and committed suicide when Boger was 9.
The only real difference between Kendall's illness and adult bipolar disorder is that her rages can turn on a dime into euphoria: "She doesn't have an off button," says Boger. "She's the loudest, the most outgoing, the friendliest. She'll lunge at other kids and hug them very tight, often scaring them to death." In Kendall, as in other bipolar kids, these mood swings -- between suicidal thoughts and outrageous joy -- can happen many times in a single day.
Since Kendall was 2, the Bogers have tried an almost uncountable number of doctors and therapies -- often traveling hundreds of miles to see specialists who aren't available in rural Idaho. "The day last December when we first agreed to try her on medication was the worst day of our lives," says Boger. "My husband and I both cried. But our five-year-old was hearing voices and asking us to light her on fire because she didn't want to be alive anymore. We told ourselves it was the right thing."
The side effects were horrible -- excessive drooling, increased agitation, stomach pain, weight gain. Recently, her parents hospitalized her for a more intensive search for the right meds, and the combination of the medications and the tools she learned there seems to be working.
Dr. Papolos is reluctant to apply the bipolar label to children younger than 10, though he makes an exception for kids like Kendall, where there is a strong family history of the disorder plus suicidal thoughts and hallucinations. In such cases, he says, the danger of failing to treat the illness outweighs the danger of the medication itself. Besides the risk of laying down behavior patterns that are increasingly difficult to change as children get older, he says, even very young children are capable of harming themselves or others.
Even doctors who are critical of early diagnoses acknowledge that there are young kids who have very serious problems and whose families are frantic. The challenge is that medication is too often their only recourse: "The therapies that work for treating disruptive behavior disorders in kids aren't readily available," says Jon McClellan, M.D., an associate professor of psychiatry at the University of Washington and the lead author of the AACAP's report on childhood bipolar disorder. Such programs, typically found in universities or teaching hospitals, employ a one-on-one approach where parents are coached by therapists to respond in specific ways to their kids' specific behaviors, but there's a shortage of skilled therapists. So when parents say they've "tried everything," says Dr. McClellan, they probably haven't, but only because they're unable to get the help they need.