Someday, Jenna Beckman's daughter might be diagnosed with bipolar disorder, an incurable swaying between manic rage and depression. But it won't be now, at age 8.
Now, in a medical reversal with few parallels, psychiatrists are backing away from the diagnosis. While some feel bipolar was once under-diagnosed in children, they worry that thousands of kids have since received the diagnosis in error, due to overzealous doctors, desperate parents, quirks in the health insurance system and aggressive marketing by drug companies.
This summer, in a sign of the profession's second thoughts, the manual that psychiatrists use to make diagnoses is being rewritten and field-tested with a new disorder that would replace bipolar in many cases.
The profession's about-face could help the next generation of troubled children, but it also raises questions about the harm done to children who shouldn't have received either the diagnosis or the potent drugs used to treat it.
"Some of the doctors that got going with that early on, they sort of drank their own Kool-Aid," said Dr. Stephen Setterberg, a child psychiatrist with Maple Grove-based PrairieCare. "They talked themselves into believing that many kids were bipolar. It essentially was a diagnostic fad."
The trouble is that fads have consequences.
While antipsychotics can be lifesavers for patients who truly are bipolar, they come with increased risks of obesity, diabetes, muscle spasms and other serious side effects.
Primary care doctors often try these and other drugs in combinations and different dosages as their patients' struggles persist and new symptoms emerge. By the time children with bipolar diagnoses reach specialists such as Dr. Carrie Borchardt, it can be tough to sort out the symptoms caused by disorders and the problems triggered by medications.
"A substantial number of those kids, if you take them off the problem medication, those symptoms go away," said Borchardt, a child psychiatrist with Children's Hospitals and Clinics of Minnesota. "And then they don't have bipolar, they just had a medication-induced problem."
In addition, the wrong diagnosis can prevent children from getting the right treatment. A bipolar diagnosis implies that children need medications, and steers them away from therapy or alternative treatments that psychiatrists are "notorious for ignoring,'' Setterberg said.
"In some ways," he said, "the worst result of the misdiagnosis of these kids is there are useful treatments that they are not offered because of the mistaken view that they can actually make things worse."
Finally, the label itself carries a life-altering stigma. "For kids, it can limit their opportunities. It can change parental or academic expectations,'' said Dr. Mark Olfson, also a Columbia U child psychiatrist. "So I think that the words matter."
'I get very worried'
In a cramped townhouse on the edge of Little Falls, Beckman raises Jade and her two brothers. Both boys have ADHD, or Attention-Deficit-Hyperactivity Disorder. Six-year-old Trevor strains to sit still, even with a cast on a broken foot. Nine-year-old Brandon moves from room to room, reading and explaining nutritional textbooks -- textbooks Beckman is studying to earn a degree in nursing.
The boys are creative playmates for Jade, but also her tormenters, as when they cut the manes from her My Little Pony dolls.
Jade's angry reaction at moments like that is understandable. What surprises her mother is the anger that explodes out of otherwise sunny days -- in school, at a store, anywhere.
A request to comb her hair one day drew a harsh reply -- "You hate me! You don't think I'm pretty" -- and anger that lingered until she finaly slept.
Watching Jade giggle and show off ballet moves in the living room one evening, Beckman was nervous.
"When she gets this happy," she said, "I get very worried."
Bipolar disorder is a possible explanation for Jade's tendencies. The disorder has genetic traits, and it runs in her father's side of the family.
On the other hand, Jade's behaviors emerged after her parents' separation -- the type of traumatic event known to trigger mood swings in children.
Jade was 5 when a psychologist suggested bipolar disorder.
"Are you positive?" Beckman replied. "Unless you're positive, I don't want that in her file."
There is no brain scan or test to confirm bipolar disorder, so doctors base a diagnosis on symptoms listed in the Diagnostic and Statistical Manual of Mental Disorders, or DSM.
Trouble is, children with the diagnosis often don't match the DSM profile, which was written for adults. Bipolar adults often suffer long bouts of depression and mania, with such symptoms as delusions, grandiose self-images and risk-taking behavior that damage their work and social lives. Children with the diagnosis can swing in and out of rage in minutes.
As a result, children get the bipolar diagnosis even in the absence of classic symptoms.
Psychiatrists say the label often comes when children are admitted to hospitals, which can't gain insurance coverage for even a short stay unless a patient has a major diagnosis.
"A lot of clinicians have the belief that, 'Gosh, if I don't get this kid a label, he'll never get the services he needs,'" said Dr. Steven Sutherland, who oversees an inpatient child psychiatric unit in Duluth.
At one point, a quarter of all children discharged from psychiatric hospitals had bipolar diagnoses, said Olfson, the Columbia child psychiatrist.
Part of the problem is the pressure parents place on doctors to define their children's frightening behaviors, said Dr. Kathryn Cullen, a University of Minnesota child psychiatrist.
"They're just looking for answers,'' she said. "If there is a diagnosis, there must be a treatment for it. And then you can just follow that path."
A diagnosis takes off
Twenty years ago, psychiatrists faced professional ridicule for even suggesting bipolar disorder in kids, because there was no evidence or plausible theories that it existed.
That changed in the mid-1990s with studies by Dr. Joseph Biederman, a top Harvard University child psychiatrist. He reasoned that chronic irritability in children, often those already diagnosed with ADHD, represented a child version of bipolar mania.
In an ill-timed coincidence, the U.S. Food and Drug Administration issued a "black box" warning in 2004 on antidepressants, noting that they carried a heightened risk of child suicide. That had a chilling effect on antidepressant use and pushed doctors toward other treatments -- especially the so-called "big gun" antipsychotics such as Seroquel and Risperdal.
A review of data from Minnesota's fee-for-service Medical Assistance program confirms this sequence. Antidepressant prescriptions for children leveled off, while spending on antipsychotics surged from $402,000 in 2000 to $6.8 million in 2006. Spending on antiseizure drugs for kids, also used to treat bipolar mania, rose seven-fold to $2.3 million.
Olfson's research shows a rise in bipolar diagnoses that matches these drug trends. His studies showed a 4,000 percent increase in the clinical diagnosis of children with bipolar disorder between 1994 and 2003, and a doubling of preschool children with the diagnosis from 2000 to 2007.
"We're always responsible in the medical field for altering our prescription patterns based upon the evidence," said Sutherland, the Duluth psychiatrist. "The problem is ... there's a lot of things that may look like evidence but really aren't -- for instance, how to interpret the black box warning."
The trend soon got a powerful tailwind from pharmaceutical companies eager to market expensive antipsychotics.
While federal regulations bar drugmakers from promoting medications for unapproved uses -- such as bipolar in children -- the companies could sponsor doctors to travel and speak with other doctors about their results using the drugs for such "off-label" purposes.
The practice came under scrutiny, though, as consumer advocates questioned whether the money not only paid for doctors to share their expertise, but also bent their opinions in favor of the drug industry.
Just this March, AstraZeneca paid $68.5 million to settle claims that it improperly marketed Seroquel for children and for other unapproved uses beyond the treatment of adult schizophrenia and bipolar disorder.
Biederman, the father of the child bipolar movement, came under scrutiny as well. An investigation by U.S. Sen. Chuck Grassley, R-Iowa, alleged that he hadn't disclosed more than $1 million in drug company lecture fees and grants he received from 2000 to 2007.
Documents produced in state lawsuits against drug companies also suggested that he promised a positive study -- before doing research -- to Johnson & Johnson regarding the use of its antipsychotic, Risperdal, in preschool kids.
Biederman did not comment for this article but has contested Grassley's conclusions and reaffirmed his finding that frequent irritability can suggest bipolar disorder in children.
Even as the number of bipolar cases swelled, some specialists were skeptical.
Dr. Ellen Leibenluft at the National Institute of Mental Health has followed children years after their diagnoses. Bipolar is supposed to be a permanent, biological brain disease. Yet Leibenluft found that, by their teen and adult years, these supposedly bipolar children had no manic symptoms that are characteristic of the disease. Instead, many were anxious or depressed.
Another anomaly is that two-thirds of the child bipolar cases involve boys, whereas only half of adult cases involve men.
"People often ask, 'Where were these kids when we were younger?'" Leibenluft said. "I can think back, and there were definitely kids who were struggling. People viewed them as problem kids, not kids with problems."
Nobody believes that children mislabeled with bipolar disorder are OK. Their extreme tantrums -- even violence and self-harm -- suggest something beyond the throes of childhood and adolescence.
But many psychiatrists believe the answer isn't contained in the current DSM. This summer they're promoting a new disorder for the book's soon-to-be published fifth edition. Named Disruptive Mood Dysregulation Disorder, the diagnosis would apply to grade-school children who suffer frequent outbursts in more than one location and remain irritable between outbursts.
Shaffer, the Columbia psychiatrist who is taking part in this effort, said the condition is more likely to lead to the use of other treatments before doctors resort to antipsychotic or antiseizure drugs.
One critic doubts the new diagnosis will help, because, like bipolar, it will be classified as "affective," meaning it has biological origins and requires drug treatment.
Dr. Stuart Kaplan, author of "Your Child Does Not Have Bipolar Disorder," believes children with bipolar diagnoses have behavior problems that require therapy, not just drugs.
Others worry that the pendulum is swinging too quickly, threatening the children who benefit from the diagnosis.
"Parents are desperate by the time they get to me," said Mimi Sa, a psychologist who assesses and treats bipolar kids at an Allina clinic in Cambridge, Minn. "They say they fear for their own safety ... It's a frightening, dramatic type of rage -- not a tantrum, I-didn't-get-my-way kind of a thing."
The debate is personal for Beckman, who admits her defiance to a bipolar diagnosis weakens as the intensity of her daughter's outbursts grows.
"It would be one thing if I could just say it's bad behavior," she said, "but it's not."
Still, it seems to her that too many options remain unexplored, and the underlying cause of what Jade calls "my anger" hasn't been examined. The only time Jade took medication, a non-stimulant for ADHD, it left her sleepy and depressed all day. Beckman hopes to find a better way.
Jeremy Olson • 612-673-7744