Double or Nothing? | News | Pittsburgh | Pittsburgh City Paper

Double or Nothing?

William was just 5 years old when his mother, Linda, began to suspect something was wrong. Her son couldn't keep still or follow directions. And if there was something William could break, he broke it.

Of course, you could say similar things about a lot of kids -- including William's two older brothers. Sometimes they too would throw tantrums, or start bouncing off the walls during a sugar high.

Neither of them, though, choked themselves with scarves until they turned blue. William did.

Double or Nothing?
Christine Buffington with her son Edward, who is being treated for bipolar disorder

Nor would his brothers stand atop the second-floor railing of their South Hills home, singing. William did that too. At one point, in fact, his parents nailed all of the upstairs windows shut, afraid he might jump out.

And Linda's other sons didn't talk about sex the way William did, or engage in other behavior so embarrassing that Linda -- like most other parents interviewed for this story -- would only speak on condition of anonymity.

But the worst part came later, when William "went into quite a depression, where he literally didn't get out of bed ... for four weeks," says Linda. And then came the day when William was 10 years old, and a teen-age family friend committed suicide.

"Mom," Linda remembers her son saying, "I know just how [she] felt the day she killed herself."

At first, doctors diagnosed William as suffering from attention deficit hyperactivity disorder. But the drugs they prescribed seemed to make things worse.

Finally, not long before Linda's 10-year-old confessed to knowing how it felt to want to commit suicide, doctors gave a new name to Linda's fears: William was bipolar.

Once widely known as "manic-depression," bipolar disorder is a well-established diagnosis among adults: Some 5 million Americans are said to have it today. But until a few years before William was born, it was only rarely found in children.

The diagnosis made sense for William, who can flip between mania and depression in minutes, according to his mother. "It's like a ping-pong ball in his head," Linda says. But even today -- and even in Pittsburgh, which is on the cutting edge of treating the condition -- much about childhood bipolar disorder remains a mystery.

Doctors freely admit that diagnosing children is difficult: After all, mood swings are part of childhood. Treating the condition can be treacherous, too. Doctors can't predict what drugs will work, and there are few studies on long-term side effects. Parents must also contend with a medical system that doesn't seem fully mature itself: Drug companies pay for research on the medications the children take, and it's hard to pay for the long-term supervision doctors say is necessary to properly diagnose the condition.

"You've got this situation that's like a tornado, and you're trying to figure out what to do," says Linda. Doctors offer conflicting advice, she says, while "other people [are] saying, 'I would never give my child these drugs.' ... [But] we had to put our trust in physicians."

Fifteen years ago, a child like William would probably have been diagnosed as suffering from attention deficit hyperactivity disorder (ADHD) -- a relatively common mental illness among young boys -- or oppositional defiant disorder (ODD), which is characterized by persistent tantrums and other disruptive behavior. Or he'd be diagnosed less formally -- as a "bad kid."

Bipolar diagnoses among children were much rarer back then. According to the latest Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), which psychiatrists use to make their diagnoses, the average age at which bipolar symptoms develop is 20.

But in the mid-1990s, Dr. Joseph Biederman, a child psychiatrist from Massachusetts General Hospital, conducted a series of studies which concluded, he claimed, that many kids diagnosed with ADHD were actually bipolar.

Since then, child-bipolar diagnoses have become much more common. More than 800,000 children in the U.S. have been diagnosed as bipolar. According to a study commissioned by the National Institutes of Health, the frequency of doctor's-office visits resulting in bipolar diagnoses among people under 20 has increased by 40-fold since the mid-1990s. That doesn't mean there's been a 40-fold increase in bipolar children -- one diagnosis can be the result of multiple office visits. But doctors today are clearly much more likely to identify the condition in children. [See graphic on page 19.]

Journalists have taken note. In the past year, child-bipolar disorder has been the subject of cover stories in both Newsweek and The New York Times Magazine, and was featured on PBS's Frontline.

But the attention has generated considerable controversy as well. Are doctors getting better at spotting the condition? Or are some just too quick to diagnose it?

"There is a lot of arguing about what is and what isn't bipolar in kids," says Dr. Gary Swanson, medical director of the Child and Adolescent Division of Allegheny General Hospital's Department of Psychiatry. Children "come in with a variety of symptoms," Swanson says, "but they don't fit in with our current diagnostic criteria."

For example, he says, "with a [bipolar] adult you're looking for things like grandiosity -- 'I'm the King of England!'" On the other hand, "When a 6-year-old says, 'I'm Batman!' and starts running around the house, what is that? Is that grandiose and crazy?"

With children, it's much harder to tease out what is a healthy daydream, and what is a delusion -- because a child typically lacks the means to act on either. Swanson once treated an adult who made diagnosis easy by opening an accounting firm: She spent thousands of dollars on office space, supplies and advertising -- despite the fact that she wasn't an accountant. A child couldn't engage in such telltale behavior.

Pittsburgh is at the center of efforts to develop a more reliable gauge for bipolar symptoms in children, with some of the most important research being conducted by psychiatrists at the University of Pittsburgh Medical Center (UPMC). For the past 10 years, UPMC's Western Psychiatric Institute has operated one of the premier centers for treating bipolar kids, the Child and Adolescent Bipolar Services Clinic.

Clinic founder Dr. Boris Birmaher says some things about the disease are becoming clearer. The center recently released a six-year study of 450 kids -- nearly half of whom were from Pittsburgh -- which offers some clues about the ailment. "Kids have many of the same symptoms" as adults, Birmaher says, but often their moods change more rapidly, within the space of a few hours rather than days or weeks.

Double or Nothing?
Dr. Gary Swanson, of Allegheny General Hospital

Birmaher divides bipolar kids into three groups. The rarest, but most serious, cases are those in which symptoms are similar to, and last as long as, those of adults. In such cases, he says, "It's very easy to make the diagnosis." More common, but less intense, are cases in which children have adult symptoms, but for shorter periods of time.

The largest number of cases, though, concern kids who have a wide variety of mood problems which are difficult to categorize. A child might show signs of ADHD, throw tantrums and act impulsively. But not all of their behaviors point toward a conclusive bipolar diagnosis. (Children who are chronically angry or depressed, in fact, are most likely not bipolar, since the condition is defined by frequent fluctuations between moods.) "Some of these kids are bipolar, but some ... are not," says Birmaher. "They may have many other problems but bipolar." Or, they could simply be moody kids with problems at home.

These are the children around whom most of the controversy swirls. "This is where the discussions are," says Birmaher. "These kids are very difficult to diagnose. ... Some people overdiagnose these kids with bipolar and some people don't."

Part of the problem is that so many childhood mental disorders look alike, and children can have multiple illnesses at once. (William, for example, has ADHD and bipolar disorder.) Kids who at first glance look bipolar can, over time, show signs of other disorders instead.

And it can take months for patterns to play themselves out. To get a proper diagnosis, doctors must thoroughly interview the entire family, taking conditions at home into consideration.

"In the home, there may be some chaos, disruption, divorce, abuse," Swanson says. "Part of the diagnostic job is to weed out what might be impinging" on their behaviors.

"You need to have enough time to assess these kids," Birmaher adds. "We see kids in the clinic that are referred to us all the time because they are bipolar. And they are not."

West End resident Christine Buffington knows firsthand how complicated it can be for a child to get a firm, and final, diagnosis.

Buffington says her son Edward (his middle name) started misbehaving -- hitting his brother, screaming and crying uncontrollably -- when he was about 4. Initially, he was diagnosed with Asperger's syndrome, a mild form of autism. But six months later, Edward's psychiatrist changed the label to a more general form of autism combined with ADHD. Soon it became clear the new diagnosis wasn't right, either.

"We tried three different [ADHD medications], and each time they made it worse," Buffington says. "It made him more hyperactive, and he would cry for no reason."

Finally, when Edward was 8, a new psychiatrist offered a new diagnosis: bipolar disorder.

Part of the clue was how badly Edward had responded to earlier treatment. Hyperactive reactions to ADHD meds can hint at bipolar disorder. Sometimes the best way to figure out a child is bipolar, in fact, is to use adverse reactions as clues. But experimentation continues even after the diagnosis is made.

"You have to play around" with the drugs, says Birmaher. "Not that you're doing research with the kid, but you have to find out the best combination. If you're lucky, you find out that with one medication, you treat everything. But it's very difficult to find cases like that."

Often, though, doctors skip over those steps, quickly diagnosing a child as bipolar and promptly prescribing treatment.

"There are kids out there that get an inadequate assessment," says Dr. Susan Vogel-Scibilia, former president of the National Alliance on Mental Illness and a practicing psychiatrist in Beaver County. "It's an endemic problem across the country."

Vogel-Scibilia puts much of the blame on for-profit pediatric hospitals, which she describes as being "like giant mills. The doctor comes in and sees 18 kids in the morning ... and they make up their mind based on a 30-minute interview."

Conversely, doctors at Birmaher's clinic observe kids for three-hour-long sessions over the course of months, even years. Vogel-Scibilia similarly prides herself on having the ability to track patients for years. (She has another advantage in studying the condition: She's lived with bipolar disorder for more than 20 years.) Often, she says, "When you sort them out 20 years later, they don't have bipolar disorder." Instead, they suffer from such illnesses as autism.

But Vogel-Scibilia says such labor-intensive care is rare because of a "huge" shortage of psychiatrists: "You can't get any of these kids in to [psychiatrists], because nobody's there. Waiting lists are phenomenally long."

Indeed, the American Academy of Child and Adolescent Psychiatrists commissioned a 2003 study finding that, on average, there was just one child psychiatrist for every 15,000 youths under age 18. Assuming that 5 percent of children and adolescents have severe mental or emotional impairments, the report notes, that means each child psychiatrist would have to care for 750 patients at once.

The report cites numerous reasons for the psychiatrist shortage. For one thing, the field requires extra training while offering "smaller income potential." Medical schools don't stress child psychiatry, and in an increasingly difficult insurance environment, "The decrease in clinical revenues [has] made it difficult for child and adolescent psychiatry academic programs to survive."

Which means there likely won't be an influx of child psychiatrists any time soon. According to the U.S. Bureau of Health Professions, there will probably be about 8,300 child psychiatrists in 2020, much less than the 12,600 the bureau expects will be needed.

Even now, Vogel-Scibilia says, many clinics are facing the same question: "How do you get the manpower to take the five new admissions you had last night ... when the insurance companies are barely paying to keep the lights on?"

"I think all health-care providers, hospitals and doctors would argue that there has been limited coverage pertaining to mental-health coverage," agrees Richard Coorsh, spokesperson for the Federation of American Hospitals, a national organization that represents for-profit hospitals. "There has been a history of benefit restrictions when it comes to mental-health issues."

That may be changing. Under a mental-health parity bill signed into law by President George W. Bush in October, health insurers will be required to provide the same benefits for mental-health care as they do for other health problems.

Insurers say the new law is a step in the right direction. "It's great to see legislation finally get passed," says Robert Zirkelbach, spokesperson for America's Health Insurance Plans, which represents nearly 1,300 insurance companies nationwide. "Mental-health coverage should be provided at the same level as traditional health coverage."

Still, Zirkelbach cautions that the impact of the new law will depend on "what the cost implications are going to be." And advocates of mental-health parity say insurance companies found loopholes in similar legislation passed in 1996. Back then, instead of paying less for mental-health treatments, insurance companies limited the number of hospital visits, or charged higher co-payments.

Double or Nothing?
Source: Archives of General Psychiatry, 2007
In less than a decade, the frequency of doctor's-office visits related to bipolar disorder has nearly tripled. It's increased forty-fold among young patients, whose portion of bipolar visits is represented in the graph by the handprints.

In the meantime, being diagnosed incorrectly poses as many risks as not being diagnosed at all. When doctors diagnose bipolar disorder too quickly today, Vogel-Scibilia says, they're often unaware of "the fallout 15 years later, when the kid's grown up and says to me, 'Why can't I get life insurance?'"

Because insurers often consider bipolar disorder a "pre-existing condition" that they are not obligated to pay for, Vogel-Scibilia says a bad diagnosis "has long-term ramifications."

And not just financially. The drugs used to treat childhood psychiatric ailments can have grown-up health effects, as Sandy, another South Hills parent, saw for herself over several painful years.

When her 5-year-old son Michael was diagnosed with anxiety disorder and ADHD, as a result of his unusual fear of death and his explosive temper tantrums, he was given both an anti-depressant and a stimulant. Both medications, though, sent him into bouts of manic behavior.

"He was sitting on his head on the couch," Sandy says. "He was off the walls. It was like, zoom, zoom, zoom, wham!"

Another drug eventually began plunging Michael into depressions. "One time he just sat here on the chair and cried nonstop for days," his mother recalls. "He was 8 years old, and he just sat there and said, 'Mommy, when am I ever going to stop crying?'"

Eventually, Sandy took her son to UPMC's Western Psychiatric clinic, where he was diagnosed as bipolar. But having a name for his illness didn't make it easier to treat. Doctors tried a series of medications, but each seemed to create as many problems as it solved.

One drug caused Michael's immune system to shut down. Another compelled him to pull out his hair --"He had a bald patch," Sandy says -- and urinate on himself. The drug also dulled his perceptions of pain. Sandy recalls a time Michael fell down the steps. Two days later he showed Sandy his bruised leg -- when she took him to the hospital, doctors found it was broken. "He never felt it," Sandy says.

In September, doctors prescribed a new mood-stabilizing medication, which Michael's mom says works much better. At least for now: Even drugs that work well can have dangerous long-term effects ... and no one knows what they are.

One of the most worrisome questions about treating bipolar children, in fact, is that so little is known about the effect even widely prescribed drugs, like lithium, may have on a child's developing mind and body.

Long-term side effects may seem a remote concern to parents like Sandy, who sometimes worry whether their child would survive the day.

"My son talks about being dead," she says. "He says, 'It would be easier for you guys if I were dead.' ... You don't know when they're going to act on it. They just can't function without [the drugs], so there is no choice."

Even so, she's haunted by the future. "You fear what's going to happen when he's 25," Sandy says. "What [are the drugs] going to do to him? You just don't know."

Neither do doctors, says Dr. Elisabeth Houtsmuller, a psychologist and former researcher at the Johns Hopkins School of Medicine in the Department of Psychiatry.

In December, Houtsmuller and other researchers at an independent medical technology and research firm, Hayes Inc., completed a survey of existing studies and clinical trials on the use of antipsychotic and anticonvulsant drugs in children. Very few studies had been done on the drugs, which are widely used on bipolar children. But evidence suggested the medications could have "very serious safety risks." Some studies found that the side effects adults suffered -- problems like neurological complications and weight gain leading to diabetes -- "may be more serious and more frequent in children."

Houtsmuller also found symptoms of another problem: potential conflicts of interest involving the medical studies themselves. "All of the studies included in our evaluation for [one class of drugs use to treat bipolar patients] somehow had pharmaceutical companies, whose product was being evaluated, involved in a financial way," she says.

Sometimes pharmaceutical companies fund the studies directly; other times they pay researchers for other tasks, like speaking at conferences. Such associations don't necessarily discredit the studies, Houtsmuller says. Still, she adds, "It is just much harder to judge the evidence when you know that the pharmaceutical company ... is funding the studies and paying the researchers."

Such questions are endemic throughout the medical field, where professionals have debated even drug-company freebies like ballpoint pens. But the matter is especially pressing where bipolar children are concerned.

For starters, there are troubling conflict-of-interest questions focusing on the very man who pioneered the child-bipolar diagnosis: Dr. Joseph Biederman.

In June, Congressional investigators found that Biederman failed to disclose to Harvard University more than $1 million in payments from drug companies, particularly Johnson & Johnson, the maker of Risperdal, which is used to treat bipolar children.

In a statement to The New York Times, Biederman defended his work, saying his only interest was "the advancement of medical treatment through rigorous and objective study." But roughly 2,000 families have sued Johnson & Johnson, along with other drug manufacturers, claiming the medications harmed their children. And in November, e-mail messages surfaced in court that raised questions about Biederman's claims. According to a Times report, Biederman urged Johnson & Johnson to help finance a new research center at Harvard's hospital affiliate Massachusetts General, where he was conducting his studies, so the facility could "move forward with the commercial goals of J&J."

Swanson, of Allegheny General, says such allegations cast a pall over the entire field. Parents will naturally wonder, "Gee, if Biederman was getting this money, how do I know what went on with this study? How can I trust it?" Oftentimes, he says, when he talks to parents about treating bipolar children, "they're suspicious: 'Are you trying to push these medications because you're in the thrall of a drug company?'"

Parents and doctors need "really good information on these drugs in order to weigh the pros and cons," Houtsmuller says. "But that information is simply lacking at this point." For one thing, there have been no large, randomized trials for any of the drugs -- even though such studies are typically the best way to determine if drugs are safe or effective. Instead, some drugs weren't tested on children at all, or were tested only with very small groups.

That, Houtsmuller says, "really is not a good basis to start giving a medication to children. The most we could say about some of [the drugs] is that they may have efficacy, but we don't know for sure."

In fact, previous experience suggests that for children, some drugs offer little help -- and could even do considerable harm. In 2004, the FDA was forced to give anti-depressants, like Paxil and Effexor, the black-box label -- the most serious warning prescription medications can be given -- because of concerns the drugs may have caused some children to commit suicide.

Still, researchers say the risks have to be put in context.

"Many people, correctly, worry about the side effects of the medication, but what about the side effects of the illness?" asks Birmaher, of UPMC. Children with bipolar disorder have higher risks of suicide, drug abuse and other problems. "You have to always weigh the risks and benefits for everything.

"You cannot tell the parents or the kids, 'Sorry, I'm not going to treat you. Come back in five years when we know the side effects.'"

In fact, psychiatrists say, there is still hope for understanding, and treating, childhood bipolar disorder.

Birmaher says UPMC researchers are close to publishing a study that tracks the children of parents with bipolar disorder. The study, he says, hopes to clarify three crucial questions about the illness: Are the children of parents with bipolar disorder at higher risk to develop bipolar and other disorders? What are the initial symptoms of bipolar? And what happens to children with the condition over time?

Thus far, Birmaher says, findings suggest that 10 percent of the children of bipolar parents are likely to have the condition too. That's much higher than the rate found among kids whose parents aren't bipolar -- less than 1 percent of such kids are bipolar.

Still, mysteries remain. For example, in the study that documented a 40-fold increase in bipolar-related visits to the doctor's office, researchers found that boys were twice as likely to make such visits as girls. Could some difference in brain chemistry be at work? Or is the disparity merely the result of misdiagnosis -- cases that should be diagnosed as, say, ADHD, which is more common among boys?

"In 30 years, I hope that we have better answers," Birmaher says.

Until then, however, parents like Christine Buffington have to tackle their child's condition day by day.

"It's not like a cold, where in a week it will be fine," Buffington says. "It's never going to be fine."

But from time to time it can be -- at least for a little while.

On a recent winter evening, Buffington sat talking about Edward's frustrating condition while her two sons played on the living-room floor. Edward was playing Hungry Hungry Hippos with his younger brother, James -- and in 20 minutes of competition, Edward didn't erupt into a tantrum, even after his brother blatantly cheated. Buffington was surprised.

"You're taking that very well," she told Edward.

Edward's good behavior continued when he and his brother began putting together a new jigsaw puzzle. After 20 minutes, there was one hole left to fill, the vacant outline of a piece they couldn't find. They scanned the floor around them, searching to no avail until James stood up.

"There it is!" Edward exclaimed.

With Edward's encouragement, James snapped the final piece in place. Smiles stretched across the boys' faces.

The puzzle had been solved. At least for today.