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Keli Anderson at her home in North Vancouver February 14, 2008 with a photo of her son James from when he was nine years old, around the time he was diagnosed as being bipolar.
Drugs by numbers
55.5 million prescriptions of psychotherapeutics were dispensed by retail pharmacies in Canada in 2007
3.4 per cent, or 1.9 million, of those drugs were dispensed to treat bipolar disorder in children under 17 in 2007
Source: IMS Health (John Lehmann/The Globe and Mail)
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No mental illness results in more premature deaths than bipolar disorder. Its victims swing between bouts of mania and depression, prone to suicide, reckless behaviour and delusions of grandeur. Not so long ago, experts mostly believed it to be a devastating disease of adulthood.
But a growing number of children in Canada, as in the United States, are being diagnosed with bipolar disorder. Kids as young as 7 are taking powerful cocktails of mood-altering drugs never tested in children, with side effects that include significant weight gain, blood clots and tremors.
Some see the spike as the natural consequence of recognizing a real childhood condition that was previously missed or misdiagnosed.
Others say that, just as the rates of attention deficit and hyperactivity swelled in the wake of Ritalin, and Prozac helped spawn the decade of depression in the nineties, childhood bipolar disorder is psychiatry's latest fad — an overdiagnosis driven by fuzzy definitions, new drugs, eager doctors and anxious parents.
And so the debate rages, as Derryck Smith, head of psychiatry at the Children's and Women's Health Centre of British Columbia, wrote in the Canadian Journal of Psychiatry last July: "There is no greater controversy in child and adolescent psychiatry than that related to the diagnosis, treatment and increasing prevalence of childhood-onset bipolar disorder."
There are no national statistics on the diagnoses of pediatric bipolar disorder in Canada. But nearly two million prescriptions for psychotherapeutics were filled last year at Canadian pharmacies to treat bipolar in children under 17, according to IMS Health, an independent firm that tracks prescription drug sales. (Figures in that category for the previous decade were unavailable.)
Doctors and experts at children's hospitals, mental-health support groups and referral services have noted a marked increase in children diagnosed as bipolar within the past decade. In fact, some psychiatrists suspect that under broad definitions, childhood bipolar disorder may be more prevalent than autism — affecting between 1 and 2 per cent of all children.
In the U.S., where children as young as two years old have received the diagnosis, the statistics suggest a veritable epidemic. In September, researchers at Columbia University reported a 40-fold increase in the diagnosis of childhood bipolar disorder between 1994 and 2004 — a jump to 800,000 children from 20,000.
"That's a staggering increase, and it has rightly raised questions about whether there has really been a true increase of that magnitude," said Roger McIntyre, head of the Mood Disorders Psychopharmacology Unit at the University Health Network.
Part of the increase reflects a new awareness that bipolar disorders can begin in childhood, but there has also been a "misapplication of the diagnosis," Dr. McIntyre said. And since more drugs have been approved to treat bipolar disorder in the past five years than in the previous 50 combined, "the conspiracy theorists are having a field day."
In Europe, where diagnosing bipolar in children remains extremely rare, experts are skeptical of the U.S. situation. They pin the higher North American numbers on looser criteria for diagnosing mania in young children and a greater willingness to medicate them.
Most Canadian doctors interviewed believe the approach here has been more conservative than in the U.S — but some see the U.S. influence spreading.
"I think it is happening here — children are being diagnosed with bipolar disorder at an earlier stage, and whether it is bipolar disorder is really unclear and we are moving in a direction of going to heavy-duty drugs more quickly," said Wendy Roberts, who assesses children in the child-development program at Toronto's Bloorview Kids Rehab.
"I joke about it being the diagnosis of the decade."
'We had to hide the knives'
It wasn't hearing the word bipolar that shocked Keli Anderson in 1997. It was her son's age at the time.
"I was like, 'Wow — he's 9,'" the Vancouver mother recalled.
But James was different even as a baby, she said — unable to settle, or sleep or be soothed. He flew into rages from the time he was a toddler, once ripping the rearview mirror from the family car.
She thought it might be autism — with his inability to socialize with other children, even in preschool, and his sensitivity to fabrics and tags in his clothes. He poured mint sauce on everything he ate and memorized the Latin names of dinosaurs. "He was so smart. We had him tested and he had an IQ of 130."
Yet James refused to leave his mother to stay in his Grade 1 class. He missed entire weeks. By Grade 4, his marks started dropping, and he got into regular fights on the playground.
At home, after a tantrum, he'd end up rocking himself in a fetal position. "I can't make it go away," he cried. "I don't want to live like this … I don't want to. Make it stop."
"He was talking about killing himself at the age of 9," Ms. Anderson said. "We had to hide the knives."
Ms. Anderson saw a psychiatrist who took her family history. Her husband's brother and father both had depression. Her niece is bipolar, and possibly her sister.
When James finally received the bipolar disorder diagnosis, Ms. Anderson searched the Internet. James never suffered bouts of mania, she said, or displayed any sense of grandeur. But she read and heard that bipolar in children doesn't look the same as it does in adults. The psychiatrist recommended James start a course of lithium. Ms. Anderson agreed on the condition that she could seek a second opinion at the hospital.
"But four to six weeks after he started the lithium," she said, "the mood swings stopped." The second opinion confirmed the diagnosis, and the course of treatment continued. "There's got to be something to this early diagnosis and treatment," she thought.
Tough to diagnose
Bipolar disorder is thought to be the result of chemical imbalances in the brain and tends to run in families. People with one affected parent have an eight-fold increased chance of developing it.
With its twin dimensions of mania and depression, bipolar disorder has always stood out as one of the toughest psychiatric disorders to diagnose, manage and monitor. Sagar Parikh, a psychiatrist at Toronto's Centre for Addiction and Mental Health, who has specialized in researching and treating adult bipolar disorder for 15 years, said this generally made it "an orphan illness."
Little research went into it, he said, there were few medicines for it, and few doctors specialized in treating it. In part, doctors were reluctant to take on these difficult patients. "They're unpredictable and you don't know what the hell you are going to see in the morning," he said. "They can be like angry drunks sometimes … telling their doctors to get lost. … But medicine, like anything else, goes through fashions."As new treatments became available, interest grew. In the 1960s, it was lithium. In the eighties, researchers realized anti-seizure drugs for epilepsy could also calm emotions. Then the nineties brought the new class of antidepressants, which drew more research into depression. Since a certain percentage of people with depression turned out to be bipolar, he said, research in the field expanded. Then the so-called "atypical antipsychotic drugs" hit the market to treat disorders such as schizophrenia and the mania associated with bipolar disorder.
"So doctors were like, 'Oh God, we've got a lot more treatments now ..,' " Dr. Parikh said.
Research always showed bipolar disorder crept up in late adolescence, but some patients said they could recall childhood symptoms. That work, Dr. Parikh said, prompted child psychiatrists to start looking for signs of it.
In the United States, two groups had a major impact. One, led by child psychiatrist Joseph Biederman at Boston's Massachusetts General Hospital, published papers on children with ADHD who also showed chronic aggression and irritability that seemed to fit the criteria for bipolar disorder. The other, led by psychiatrist Barbara Geller at Washington University in St. Louis, described children whose moods could cycle rapidly between elation and sadness several times in a single day — suggesting mania.
In 2000, the U.S. National Institute of Mental Health met to discuss the controversy playing out in the literature. The meeting resulted in a key article in the Journal of the American Academy of Child and Adolescent Psychiatry that concluded bipolar disorder could be diagnosed in children who had not yet reached puberty.
Classic bipolar disorder in late adolescence and adulthood had been defined by dramatic shifts out of a "baseline" mood state into episodes of mania, depression or mixed states lasting weeks. But the new thinking suggests children with bipolar have episodes that can last longer than a few weeks, cycling more rapidly between mood states, so that their symptoms seem chronic. It proved to be the tipping point.
"In the past, there was a very narrow and conservative-view definition of bipolar disorder," Dr. McIntyre said. "So if the goal posts are wider, more people are going to be scoring into the net."
But Anne Duffy, Canada research chair in child-mood disorders, said the broader definition is dangerous: "The broader you go, the more you are going to start diagnosing normal variation. Unless you get the diagnosis right, the treatment is not justified."
Dr. Duffy believes the evidence does not support the idea that young children can be diagnosed as manic.
"The diagnosis criteria can't just be a checklist of symptoms. You have to take it in consideration of other things — is there a pattern of illness, is there a family history? A lot of these kids are not well, but maybe it's not bipolar disorder."
Last fall, at the annual meeting of the Canadian Attention-Deficit/Hyperactivity Disorder Alliance Resource, Dr. Duffy's conservative stand drew her into a row with Dr. Biederman. "I was debating Biederman vociferously and he left precipitously," Dr. Duffy said.
His viewpoint, she said, is that the bipolar label may not be correct in all cases, but that the children had to be treated. Dr. Duffy said she argued that it's like treating a headache and not knowing what's wrong. "Is it a tumour, glaucoma, a migraine?"
Many parents have turned to Internet checklists to assess their children. After the success of his 1999 book The Bipolar Child: The Definitive and Reassuring Guide to Childhood's Most Misunderstood Disorder, U.S. psychiatrist Demitri Papolos, along with his wife, Janice, published online one of the most extensive lists.
"My sense is that book had a big impact," said Susan Baer, a psychiatrist in the mood and anxiety disorders clinic at the B.C. Children's Hospital. "More parents are coming in with the belief that their child has this, and sometimes people would rather have a clear answer."
Battling the rages
Utter desperation drove Alison Lundgren to the Internet four years ago.
Her daughter, Riana, who was 6 at the time, had displayed fits of rage since infancy. She could scream and cry for hours. By the time she was a toddler, telling her she couldn't have French fries at McDonald's triggered full-blown rages. Sometimes, they bore the eerie hallmarks of "superhuman" strength.
"She kicked a hole through the closet door and pulled a queen-size bed out and into the hall."
The Calgary mother of three had met with school psychologists and her family doctor, but got nowhere. She waited three months to see a pediatrician who agreed it might be a mental illness. She tried anger management therapy, but that didn't help. That summer, at 61/2, Riana threw the family cat across the room in a temper.
It was Ms. Lundgren's mother-in-law, who suffers from bipolar disorder, who recognized the stubborn rages. That's when Ms. Lundgren, "at the end of my rope," jumped online, read about the new criteria for bipolar disorder and children, and the Papolos website outlining symptoms.
"Hyperactivity, rages, it was all there," she said. "Riana could be happy and giddy one minute and then raging the next, and cycle between the rages 20 times a day. … It's not the grandiosity so much as it is with adults. It's more chronic irritability, never being happy, being in a bad mood all the time."
With the information in hand, she contacted another psychiatrist, who diagnosed Riana, at age 7, with bipolar and recommended risperidone — one of the atypical antipsychotics originally approved to treat schizophrenia in adults.
Now 10, Riana has remained on the drug, along with another mood stabilizer, and her mother said it has helped battle the rages, but not completely. Recently, she has also begun taking an antidepressant. So far, the most notable side effect has been weight gain. Her cholesterol levels have also increased.
"It does concern me, the side effects," she said. "But we don't think she can function without her meds … the risk is that she is suicidal, and we'd rather have her with us."
Ms. Lundgren has received calls from other parents asking for the name of her daughter's psychiatrist, but she stresses: "Diagnosing it is not an exact science, but based on the evidence, and her response to the medication, it is bipolar. I have to believe it because I live it, and no one's offering me any other answers."
Uncertain futures
No one disagrees that diagnosing bipolar disorder in children is worthwhile if it means staving off the condition's worst effects. Research suggests the earlier the disease strikes, the more severe the illness will become. But no one yet knows whether children broadly diagnosed as bipolar now will grow up to have classic bipolar disorder as adults.
"We don't know what will happen to these kids," said Jane Garland, head of the mood and anxiety disorders clinic at B.C. Children's Hospital. "In life, we have to learn to live with that kind of uncertainty. … We have to put the issue of bipolar disorder in perspective. Changes come through research."
Dr. Garland noted that children diagnosed under the broader definition of bipolar do not seem to be helped as much by the medications used to treat classic bipolar. These children seem to make the most progress through environmental supports, but ethically, she said, "one must give children the whole treatment package."
North American psychiatrists have been more likely than those in Britain to use medications in children, she said, particularly ADHD medications, and antidepressants. Some European experts suspect the use of antidepressants may actually be contributing to the manic-like symptoms seen in children here.
In December, 2006, the controversy over medicating young children peaked in the U.S., when four-year-old Rebecca Riley, a Massachusetts preschooler who had been diagnosed with bipolar disorder at age 21/2, died from an overdose of her medications. (Her parents are facing murder charges.)
But Benjamin Goldstein, who completed his residency in psychiatry at Toronto's Sunnybrook Health Sciences Centre, and now specializes in researching and treating childhood bipolar disorder at the University of Pittsburgh Medical Centre, says the case has not generally affected treatment of bipolar in children — nor should it: "If this was diabetes, and someone had died from an overdose of insulin … would we talk about stopping the diagnosis of diabetes?"
Still, Dr. Goldstein agrees the long-term side effects of the drugs, which can drive up glucose and cholesterol levels, are worrisome — they could lead to obesity, heart disease and diabetes.
The U.S. Food and Drug Administration has recently offered drug companies incentives to collect safety data on the use of psycho-pharmaceutical drugs in children, promising to extend medication patents for six months. No drugs have been approved in Canada to treat bipolar disorder in children and Health Canada cannot, by policy, say whether any drug company has applied for that status.
But as Dr. McIntyre noted, that does not serve as a barrier to psychiatrists using them off label.
Gordon Floyd, executive director of Children's Mental Health Ontario, said most experts agree drugs should never be the first or only line of treatment in children with mental-health problems, "but we don't have the resources to deliver that kind of intensive service" of talk or cognitive therapy and supports.
"Parents want a fast solution — they don't want to drive the kid to counselling every week," Mr. Floyd said. "So the doctor pulls out his prescription pad and tries to figure out a dose for this little person and it's guesswork, and you're trying to anticipate what the long-term effects will be on a brain that's still developing."
Long-term effects
James, who was diagnosed as bipolar at age 9, is now 19 and has been on various psycho-pharmaceuticals for a decade. He gained 20 pounds in three months when he was 11, saw his self-esteem plummet and came off the drug. He still has his blood monitored every six months, but his mother, Keli Anderson, considers it "tremendous how far he's come."
"He's got a girlfriend, he's got friends," said Ms. Anderson, who has since founded FORCE, a B.C. children's mental-health support service. And it's not just the drugs, she stressed, there have been two years of day-treatment therapies and the steady support of the family.
But the long-term effects of the medication have taken a toll, she said. The drugs made James "too groggy in the morning to go to school … they've slowed his cognitive function … he has hardly had any education." He now has a job stocking shelves at a local pharmacy.
"He'll never be a doctor, but I was never going to define James by his intellect," Ms. Anderson said. "I just wanted him to be a functioning and happy kid … and there were times I could never even picture him as an adult."
