Pediatric Puzzles: Seeking a Bipolar Diagnosis in Children

Although it has become much more common, diagnosing bipolar disorder in children and teens poses special challenges, including misdiagnosis due to other conditions that share the same symptoms.

In less than a generation, childhood bipolar disorder has morphed from an extremely rare diagnosis to one very much on the radar of mental health professionals. Researchers are studying every aspect of the illness in children—how it manifests, what percentage actually have the disorder, how it progresses over time and how to develop safe, effective medications to treat it.

Meanwhile, many of the specialists who must diagnose children with out-of-control emotions and disruptive behaviors received medical training before bipolar disorder was widely accepted as a childhood illness. Additionally, they must rely on inexact tools to reach a diagnosis, including widely accepted descriptions of the disorder based not on children, but on adults.

The result, experts say, is that bipolar disorder is being missed in some children who have it, while others are being misdiagnosed with bipolar when they actually have other conditions—such as general anxiety disorder, oppositional defiant disorder (ODD) and attention-deficit/hyperactivity disorder (ADHD, also known as ADD)—that share some of the same symptoms­.

The difficulties in making an accurate diagnosis of pediatric bipolar only add to the frustration felt by families seeking help. Nicole T. of British Columbia received a slew of other diagnoses over the course of seven years.

Nicole was not quite four years old when her behavior became frighteningly extreme. She would jump off dressers, attack her mother and bang her head on the floor until she knocked herself unconscious.

“She needed constant supervision,” says her mother, Katie. “We called her Hurricane Nicole.”

Despite a family history of bipolar disorder, Nicole’s psychiatrist consistently wrote “rule out bipolar” on her chart, meaning he was not ready to make an official diagnosis. Nicole, 11, did not receive the bipolar diagnosis until this year.

“Giving a name for it was huge,” says Katie. “Having people tell me over and over that they were pretty sure it was bipolar, but not diagnosing it was frustrating.”

Now that her daughter has a diagnosis that fits her behavior, Katie is hopeful school officials will be more cooperative about accommodating Nicole’s needs.

“What they see is a child acting out, not a child in trouble,” she says.

Risks of misdiagnosis

Pediatric bipolar is “a high-stakes diagnosis,” says Eric Youngstrom, PhD, associate director of the Center of Excellence for Research and Treatment of Bipolar Disorder at the University of North Carolina at Chapel Hill School of Medicine.

“If a child has bipolar disorder and we miss it, the best-case scenario is that she has relapses, and each relapse becomes harder to treat,” he says. Untreated bipolar can lead to worse scenarios: “These kids are also at very high risk of using alcohol and drugs, getting arrested, [getting] pregnant and suicide.”

And, he adds, “If we mistakenly diagnose a bipolar child with something else and treat it [instead], the meds can make the bipolar worse.”

Several studies confirm that the number of children being diagnosed with bipolar has risen since the mid-1990s. An influential and much-quoted study published in the September 2007 issue of the Archives of General Psychiatry found a forty-fold increase in the number of office visits which resulted in a diagnosis of bipolar in youth 19 and under during a recent 10-year period.

Giving a name for it was huge. Having people tell me over and over that they were pretty sure it was bipolar, but not diagnosing it was frustrating.”

From 1994-1995, 25 out of every 100,000 visits resulted in a diagnosis of bipolar disorder. This rose to 1,003 per 100,000 visits in 2002-2003.

Researchers tend to be cautious, however, when interpreting the increase in diagnoses. Experts interviewed agree that bipolar disorder is both over-diagnosed and under-diagnosed. “We don’t know if there is actually more of it now, whether it has always been there [and] we were just missing it, or if it’s getting over-diagnosed and a lot of people who don’t have it are getting the label,” says Youngstrom.

From 2002 to 2008, Youngstrom and his colleagues re-evaluated more than 800 children from the Cleveland metropolitan area, most of whom had already been evaluated at a local community mental health center. The researchers found that clinicians had missed two-thirds of the bipolar cases, and in more than half of the cases where they did suspect bipolar, the children did not have it.

Part of the problem in diagnosing bipolar disorder is the lack of biological markers—objective measures to help diagnose and treat a condition. Believing that children with chronic irritability and explosive anger were being misdiagnosed with bipolar, Ellen Leibenluft, MD, a senior researcher at the National Institute of Mental Health, turned to electroencephalograms, a technique for studying the electrical currents within the brain, to compare how children with bipolar and children with chronic irritability react to frustration.

While both groups of children became more frustrated than a control group, the children with bipolar showed abnormal electrical signals in one area of the brain, while the irritable children who were not diagnosed with bipolar showed abnormalities in another part of the brain. Leibenluft notes that the irritable-only children generally don’t have a family history of bipolar disorder and most are male, while bipolar tends to split more down the middle in terms of gender.

Troublesome tools for diagnosis

The absence of diagnostic tests for bipolar in both children and adults means that doctors must rely on assessing symptoms. Family members can help greatly in this effort by tracking a child’s moods, behavior, sleep patterns and energy level over time, says David Axelson, MD, associate professor of psychiatry at the University of Pittsburgh School of Medicine and director of the Child and Adolescent Bipolar Services program at Western Psychiatric Institute of the University of Pittsburgh Medical Center.

Still, Axelson acknowledges, it can be “very hard to discern episodes [if] a child has chronic behavior problems.”

There are also various rating sheets that health care providers can give family members to determine if a child’s symptoms meet the criteria for bipolar disorder.

…[researchers] have found that most children diagnosed with bipolar do have clear episodes of elation…

Doctors also turn to the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association. But child mental health advocates say the criteria for bipolar disorder in the current edition, known as DSM-IV, is problematic because it was written for adults. The DSM states that clear episodes of elation and depression must be present to diagnose bipolar, yet children with the illness often exhibit rapid mood fluctuations, explosive moods, recklessness and aggression.

“The kids we serve are very, very ill and not adequately served by DSM-IV,” says Susan Resko, director of the Children and Adolescent Bipolar Foundation, an advocacy organization. “They are developmentally different than adults and the criteria that work well with adults, doesn’t necessarily work well for kids.”

To tease out bipolar disorder from other illnesses, like ODD or ADHD/ADD, doctors need to look for symptoms that do not overlap, says Benjamin Goldstein, MD, PhD, a psychiatrist at the Sunnybrook Research Institute in Toronto whose research focuses on adolescent bipolar.

“For example, if a child with ADD has insomnia, they will be tired the next day; a child with bipolar [who didn’t sleep] won’t feel a need for sleep.” Hypersexuality is another bipolar marker, as it is a symptom of mania but not characteristic of ADD.

Sifting through symptoms

Researchers involved in the largest longitudinal study on children and adolescents with bipolar are trying to learn more about what bipolar “looks” like in children and how it progresses, in hopes of improving diagnosis and treatment. They have found that most children diagnosed with bipolar do have clear episodes of elation, as is typical with the majority of adult cases.

“In some kids, it’s clearly the same illness,” says Axelson, who oversees one of the three study sites.

More than 400 children who have bipolar I, bipolar II or bipolar-Not Otherwise Specified (BP-NOS) are enrolled in the Course and Outcome of Bipolar Youth (COBY) study.

COBY researchers have also found that, for many children, the mood disorder becomes more severe over time. About 40 percent of the study participants diagnosed with bipolar-NOS converted to bipolar I or II within four years.

“It may be we’re just catching them in the early part of the illness and over time, it progresses,” says Axelson.

Children are more difficult to diagnose because they are immature, evolving beings, says Susan Resko. “Children are not always able to express their emotions. Their emotional systems are overwhelmed, so they don’t have the words to express what they are feeling, or they are afraid to.”

The range of symptoms shown by different children—even within the same family—also makes pediatric bipolar difficult to diagnose.

Rosie M. of California was not diagnosed or treated with bipolar until she was 18, but her mother, Sally, believes she showed signs of the illness by age 10. While Rosie became extremely anxious and depressed, her younger brother’s primary symptoms were rage and aggression.

With Rosie, says Sally, “She was crying a lot. She was fearful of everything. The wind and rain especially terrified her. She would run around the room, from window to window, starting to hyperventilate.”

The kids we serve … are developmentally different than adults and the criteria that works well with adults, doesn’t necessarily work well for kids.

Her brother Rob, now 12, was 4 when he began to fly into sudden rages. “He’d be playing happily on the floor and then go running around the house screaming,” says Sally, co-facilitator of a support group for caregivers of people with bipolar. “He transformed into this very angry person, kicking, hitting, biting and using foul language that we don’t use in our house. We’d have to restrain him sometimes for an hour or an hour and a half to protect him—and us.”

A careful evaluation

Due to the rapid increase in cases of pediatric bipolar, mental health professionals often are trying to assess an illness they were not trained to diagnose in children, says Sunnybrook’s Goldstein.

Rosalie Greenberg, MD, a child psychiatrist who practices in Summit, New Jersey, trained in the early 1980s, when pediatric bipolar disorder was considered extremely rare. She has learned to play detective when trying to determine if a moody child has a mood disorder.

Now, she says, most of the children she sees have bipolar disorder. Greenberg, author of Bipolar Kids: Helping your Child Find Calm in the Mood Storm (Da Capo Press, 2008) searches for patterns of behavior, such as sleep disturbances, grandiosity, flights of idea, high distractibility and high energy.

“Bipolar NOS is what you mostly see in kids,” she says. “They don’t meet the [DSM-IV] criteria over the number of days you must be ill, because they are so up and down over the course of one day. That’s true for about 30 percent of adults, too,” she adds.

Greenberg typically meets a family several times before making a diagnosis, first speaking with just the parents to get a full family history. “Most of the kids have a family history of mood disorder or bipolarity,” she says.

Elation and grandiosity can look different in children than adults, Greenberg says, such as a “plastered-on smile out of proportion to whatever is going on.” A child can’t go on a shopping spree, but they express flights of fancy in other ways. One frantic mother called Greenberg for advice about her 7-year-old, who was telling her he was going to leave home to travel the world.

Greenberg got on the phone with the child. “I told him, ‘That’s a very interesting idea, but you’re coming in Monday. Why don’t you wait and we’ll talk about it then?’” Greenberg recalls. “He was being grandiose and narcissistic, so I treated him like he was an adult, and that’s how he was able to listen.”

UNC’s Youngstrom has found parents are far more likely to complain about a child’s anger and rages than about periods of elation, which tend to be less disruptive. Since the presence of elation, grandiosity or mania is key to making the bipolar diagnosis, during an initial assessment Youngstrom asks parents if their child is being overly giddy and goofy at unexpected times, like bedtime and first thing in the morning, and whether “the elation [is] happening too often, too intensely or lasting too long.”

He also words his questions to children carefully to get a fix on symptoms. For example, Youngstrom says that if he asks a child who whose sleep patterns have changed whether he is feeling more irritable than usual, the child usually says no. “If I ask, ‘Since you’ve been sleeping less, do you feel like you’re surrounded by idiots?’ I’ll get a different answer,” Youngstrom explains.

Ultimately, learning how to advocate for your child and becoming informed about mental illness may be the most important factors for parents seeking an accurate diagnosis. Owen W., 16, who lives in upstate New York, credits his mother, Alison, for getting him on the road to recovery.

Owen lived with depression for years, but in sixth grade, he began having mood swings. “I’d have about 5 to 20 mood swings a day,” he says. “If someone in the family teased me, I’d burst into tears, like someone had shot my puppy. If my aunt told me a joke on the phone, I’d laugh hysterically.”

He became so despondent that he attempted suicide. During a nearly month-long hospitalization, Owen was prescribed antidepressants. When his mother saw that his condition was not improving, she began doing her own medical research. The more she read, the more convinced she became that her son had bipolar disorder. His doctors ultimately agreed.

Owen has this advice for parents: “Even if your child does not have bipolar, keep the pressure on the doctors until you know the diagnosis is right. Don’t give up until you get your child back.”

Code: bphopekids
Printed as “Pediatric Puzzles: Diagnosing bipolar in children,” Winter 2010