Colleen Webster* never imagined she'd need to medicate her own child. Webster, who has a master's degree in special education, is an expert in behavior modification. Then Aaron* was born. "Early on, we knew something wasn't right," says the Charlotte, North Carolina, mom. Even as an infant, he was irritable and anxious -- so anxious that Webster had to make sure he was the first baby to arrive at daycare every morning so the whole staff could help him adjust. By age 2, Aaron was given to uncontrollable rages: biting, hitting, spitting. Friends told Webster that her baby's behavior was just an extreme version of the terrible twos. It took five doctors for Aaron to get a diagnosis at age 4: early-onset bipolar disorder.
Therapy had no effect on Aaron's outbursts. Webster and her husband finally agreed to try medication, but watching what the drugs did to Aaron was, she says, literally nauseating. Meds for attention deficit hyperactivity disorder (ADHD) made him manic and anxious: "He was cowering in my husband's armpit." An anticonvulsant caused hallucinations: "He would shriek that he saw bugs." A tranquilizer made him extremely uninhibited: "He would do things like pull his pants down in public and rub his private area."
Aaron, now 6, is currently doing well on Seroquel, an antipsychotic, and lithium, long prescribed for classic adult bipolar disease. He's affectionate, responds appropriately to discipline, and is able to go to school in a regular classroom. "I know there are many people who believe that parents use these kinds of drugs as a quick fix," says Webster. "But every time he has to try a new medication, I'm a nervous wreck -- I spend hours researching the pros and cons, I call his school repeatedly to see how he's doing. I watch him like he's under a microscope."
But, she says, the alternative to meds is even worse: "No one knows what it's like to have a child who bites through your skin when he doesn't get what he wants, who threatens to kill you -- and then, a minute later, comes to you with tears running down his face, so remorseful, and says, 'Mommy, I want to go to sleep and never wake up.'"
Drugs: Lifesaving or dangerous?
Moms like Colleen Webster often feel harshly judged by other parents, who wonder how a young child could possibly need not just one but several big-gun psychiatric medications. It doesn't help that the medical community is divided on the issue. Many doctors think young children now take too many dangerous drugs, the long-term effects of which aren't yet known. But others believe these are lifesaving medications for life-threatening conditions. The issue has become tormentingly complicated.
No one knows how many children are being diagnosed with mental illness -- ranging from bipolar disorder to more recently recognized conditions like oppositional defiant disorder -- and being treated for them. According to one study, behavioral medications for children accounted for 17 percent of all spending for pediatric drugs, more than even antibiotics and allergy drugs. And a study in Pediatrics showed that 19 percent of all pediatric visits among 4- to 15-year-olds involve a psychosocial problem requiring attention or intervention, making such problems the most common chronic reason to consult a pediatrician.
Cultural changes could explain the rising tide of pediatric prescriptions. Overcrowded classrooms can make teachers less tolerant of students who are unable to sit as still as their classmates -- sometimes to the point of recommending that parents consider meds. Parents are more willing to consider a drug, even for their kids, because advertising by pharmaceutical companies has destigmatized the whole idea of medication. And because of the way insurance companies reimburse physicians, doctors may be more likely to prescribe drugs than therapy: "A psychiatrist who schedules four medicine checks in an hour earns about twice as much from an insurance company as he would for forty-five minutes of counseling," says Lawrence H. Diller, M.D., a behavioral pediatrician and the author of Should I Medicate My Child?
Many critics note that with drug-company payments to doctors on the rise, it's not surprising that prescription writing has also increased. The New York Times found that in Minnesota (the only state that requires doctors to report payments from drug companies) payments to psychiatrists were six times higher in 2005 than they had been in 2000. During the same period, prescriptions for antipsychotics rose ninefold.
And yet, as Demitri Papolos, M.D., coauthor of The Bipolar Child and director of research at the Juvenile Bipolar Research Foundation in Maplewood, New Jersey, notes, "These families are constantly in crisis. Every day is heart-wrenching." Dr. Papolos, who advocates treating kids with drugs when appropriate, says, "Early intervention makes a big difference in terms of what happens in the life of the family."
Margaret Renkl is a contributing editor.
* Some names in this story have been changed.
When families are in crisis
There's no blood test or genetic marker for mental illness. Doctors rely on their own assessment of a child's behavior -- and a parent's reporting of it -- to make the call, and sometimes arrive at a diagnosis after a single visit. When the diagnosis isn't right, or the prescribed treatment doesn't work, parents end up going from doctor to doctor in hope of relief.
Susan Wagner of Oklahoma City has a "bright, wonderful six-year-old son with an alphabet soup of diagnostic labels in his medical file." Henry has been diagnosed with ADHD, NLD (nonverbal learning disability), SID (sensory integration dysfunction), and GAD (general anxiety disorder). As an infant and toddler, he didn't interact with his parents, slept poorly, and was in constant motion, even when Wagner read him a story. "Before Henry was diagnosed, I spent a lot of time second-guessing myself and wondering if I was just imagining all these quirks," she says. "As difficult as it was to hear that my son really is different, it was also a huge relief to me because it meant that I was not a horrible mother."
In the two years since his diagnosis, Henry has gone on to do many things his doctor said he would never do -- such as show love and empathy for his brother, Charlie, 5. But finding the right treatment for Henry's array of problems remains a challenge. The Wagners have tried three different schools, occupational therapy, dietary changes, sticking to a predictable schedule -- and, finally, medication. In one six-month period, Henry tried four different ADHD drugs; all caused problematic side effects like insomnia and facial tics. Wagner is still looking for the right therapy, or combination of medication and therapy, to help him. "At every step of the way, I have felt simultaneously that I was doing exactly what I needed to do to help my son and that I was completely failing him," says Wagner.
Those who decide not to put their children on medication can also have a difficult time. Mary Tyson's* 5-year-old son, Justin*, was diagnosed at age 3 with ADHD, but he's not on Ritalin. "My child's brain is still developing, and we don't know what these drugs will do to him. I'm also concerned that if we start medicating him now, we will never teach him to help himself when he feels out of control," she says. Instead, she has opted to modify Justin's diet and treat his allergies, which seems to help somewhat, though the outbursts are far from over. "He can be defiant and violent, and when he gets into one of these episodes, there's no reasoning with him," says Tyson. "Keeping him from hurting himself or someone else is what we do."
The decision not to medicate has earned Tyson the disapproval of her son's therapist and pediatrician -- and even members of her own extended family. "It's so isolating to know that my own family doesn't understand," she says.
Though doctors recommend caution in prescribing medication to a child, most agree that ADHD meds have been around long enough and studied extensively enough to be considered generally safe. "Ritalin doesn't hurt anybody if used properly; it's just a performance enhancer. But Ritalin is candy compared to Risperdal and other antipsychotics," says Dr. Diller. "Every few months a new danger -- like Type 2 diabetes is discovered with these drugs."
In August the Food and Drug Administration approved Risperdal to treat kids over 10 with bipolar disorder. But that doesn't stop medical professionals from recommending it and other antipsychotics for little kids. Five-year-old Kendall Boger of Dover, Idaho, once received a diagnosis of a developmental disorder because of her uncontrollable rages and a recommendation for Risperdal after a short consultation with a psychologist she'd never seen before. Her parents didn't fill it.
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.
The hidden costs
Beyond the literal expense of doctors and therapists and diagnostic tests and medications, the social costs of a mentally ill child can be unimaginable to someone who has never struggled with one of these conditions. Parents are frequently blamed for their child's bad behavior. Georgeta Coleman, diagnosed with bipolar disorder at 6, was expelled from first grade for acting out. When her mom, Mary Ellen, came to take Georgeta home, a school official told her that if the girl had had "better parenting," things might have turned out differently. (Even worse, Coleman, of Pleasant Valley, New York, then had to switch jobs because her child couldn't go to school and a supervisor wasn't satisfied with the partial work-from-home arrangement Coleman devised.)
Kids also face the stigma of being different. "To see the pain in my child's eyes because she's trying so hard to be good and 'normal' -- it rips my heart out every day," says Claudine Boger.
But for these moms, perhaps the worst feeling of all is isolation -- the sense that family members, their child's teachers, and even their own friends have no idea what they're going through. "In the early days, when I felt like I was struggling the most, being told over and over that I needed to relax only made me feel like more of a failure," says Wagner.
And yet, despite the heartache, the expense, the sleepless nights, and feeling judged, these moms remain hopeful. "He's my baby," says Colleen Webster simply. "I have scars on my arms from his bites, and they will always be reminders of bad times with my son. But I also hope they will be reminders of how far we've come. I hope someday they'll be my badge of victory."