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Wednesday 14 November 2012

The Bipolar Puzzle: Kids and Bipolar Disorder

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The Bipolar Puzzle

Published: September 12, 2008
When Claire, a pixie-faced 6-year-old in a school uniform, heard her older brother, James, enter the family’s Manhattan apartment, she shut her bedroom door and began barricading it so swiftly and methodically that at first I didn’t understand what she was doing. She slid a basket of toys in front of the closed door, then added a wagon and a stroller laden with dolls. She hugged a small stuffed Pegasus to her chest. “Pega always protects me,” she said softly. “Pega, guard the door.”

James, then 10, had been given a diagnosis of bipolar disorder two years earlier. He was attending a therapeutic day school in another borough and riding more than an hour each way on a school bus, so he came home after Claire. Until James’s arrival that April afternoon, Claire was showing me sketches she had drawn of her Uglydolls and chatting about the Web site JibJab, where she likes to watch goofy videos. At the sound of James’s footsteps outside her bedroom door, she flattened herself behind the barricade. There was a sharp knock. After a few seconds, James’s angry, wounded voice barked, “Forget it,” and the steps retreated.
“If it’s my brother, I don’t open it,” Claire said. “I don’t care if I’m being mean. . . . I never trust him. James always jumps out and scares me. He surprises me in a bad way.”
I left Claire’s bedroom and found James with his mother, Mary, in their spacious living room, which has a sidelong view of the Hudson River. James is a fair, athletic-looking boy with a commanding voice and a restless, edgy gait. He began reading aloud a story he wrote at school called “The Mystery of My Little Sister.” It involved James discovering Claire almost dead, rescuing her and forming a detective agency to track down her assailant. He read haltingly, often interrupting himself. When his mother asked a question, the roil of frustration that nearly always seethes just under James’s surface, even when he is happy, sloshed over.
“If you listened on the first page, it says it!” he scolded her, then collapsed hopelessly beside the coffee table. “You don’t get anything. Now I lost my place. Forget it. I give up.” He crossed his arms on the table and rested his head in them. Mary waited quietly in her chair. Sure enough, a minute or two later James began reading us a list he had concocted of 50 ways to get rich. The next time his mother spoke, he bellowed: “I wasn’t talking to you! I’m not reading it now!” He threw the paper down and stalked out of the room.
The baby-sitter arrived, a 27-year-old preschool teacher whom Mary hired to come in a few hours each week and help maintain harmony when both her children were home. It wasn’t easy. There was a basic rhythmic pattern to the afternoon: James reached out, craving attention and engagement, then stormed away in roaring frustration only to return, penitent and eager to connect, cuddling and hanging on to his mother in a way unusual for a boy his age.
At one point Claire appeared in the next room, and James hurled a ball at her, missing. Claire shrieked as if she’d been hit, screaming, “What did you do that for?”
“Wow, I’m scared,” James said. “I’m scared, right, Claire?” He threw the ball at her again, then asked, “Want to have family time?”
“No,” Claire hollered. “I want James to get away from me. Get away!”
James made a series of loud, taunting sounds, which induced more hysterical cries from Claire. “James, you’re provoking,” Mary said evenly. “Claire, you’re overreacting.”
Claire rode out of the room in her wagon. James sat with his stockinged feet in his mother’s lap and played his Nintendo DS, though it rarely held his attention for more than a few minutes.
“The therapist says that Claire is in crisis,” Mary told me, referring to a social worker the family sees twice each week. “James is feeling better, James is feeling happier, so Claire, who has always been easy, is letting it all out now.”
James has never been easy. Like many children whose emotional problems are being diagnosed as bipolar disorder, his main symptoms are aggression and explosive rage (known in clinical parlance as “irritability”), and those traits have been visible in James from the time he was a toddler. Fifteen years ago his condition would probably not have been called bipolar disorder, and some doctors might hesitate to diagnose it in him even now, preferring other labels that more directly address James’s rage and aggression: Oppositional Defiant Disorder (O.D.D.) or Attention Deficit Hyperactivity Disorder (A.D.H.D.) — both of which have been applied to James as well. But since the mid-1990s, a revolution has occurred in the field of child psychiatry, and a mental illness characterized by episodes of mania and depression (bipolar disorder used to be called “manic depression”), which once was believed not to exist before late adolescence, is now being ascribed rather freely to children with mood problems, sometimes at very young ages.
The Diagnostic and Statistical Manual of Mental Disorders (the current edition is referred to as D.S.M.-IV) describes bipolar disorder as a condition whose average age of onset is 20, but virtually all the leaders in the field now say they believe it exists in children too. What they don’t agree on is what, exactly, characterizes the disease in kids, or how prevalent it is; some call it rare, while others say it is common. Many clinicians say the illness looks significantly different in children than in adults, but the question of how it differs, or what diagnostic terms like “grandiosity,” “elevated mood” or “flight of ideas” (all potential symptoms of adult bipolar disorder) even mean when you’re talking about kids, leaves room for interpretation. For example, it’s normal for children to pretend that they are superheroes, or believe that they can run faster than cars, whereas in an adult, these convictions would be signs of grandiosity. Equally unclear is whether a child who is identified as having a bipolar disorder will grow up to be a bipolar adult. Work on the D.S.M.-V is under way, and discussions have begun on how to address the issue of bipolar children.

Photo Illustration by Gerald Slota for The New York Times
Photo Illustration by Gerald Slota for The New York Times
As Ellen Leibenluft, who runs the pediatric bipolar-research program at the National Institute of Mental Health, told me, “There definitely will be — and needs to be — more description of what bipolar disorder looks like in children, how one diagnoses it and some of the challenges.”
According to Mary, James was excessively cranky and active from babyhood (except where otherwise noted, the names of patients and their families used in this story are middle names). “By 7:30 every morning, I’d be in the playground with him,” she said. “If it was over 20 degrees I was out the door, because if he was inside, he would rage.” Still, James seemed at first to thrive in preschool. “I said: ‘O.K., this is my problem, not his problem. This is my parenting skills, my lack of discipline, my lack of structure.’ However, when I would pick him up from school he would scream and cry and rant and rage, sometimes remove his clothes, it would take me half an hour to get him out of the vestibule. I’d have to literally tie him in the stroller. He was 3. People were absolutely horrified.”
When James was 4 and Claire was a newborn, his pre-school contacted Mary in the fall and told her that her son seemed hyperactive and aggressive. After three days of testing, a developmental pediatrician diagnosed his condition as Oppositional Defiant Disorder, and prescribed Zoloft, an antidepressant. “We refused to give a 4 1/2-year-old Zoloft,” Mary said. They limped through the rest of the year, but in order for James to remain at the school for another year, they had to promise to hire a “shadow” — someone to be with James full time in the classroom — at a cost of $20,000 a year. Mary and her husband are affluent enough to afford this (her husband, Frank, has his own business; Mary hasn’t worked since James was born); otherwise, James would have had to leave the school.
Meanwhile, life at home was devolving into a nightmare. “James used to wake up every morning violently angry,” Mary said. “I used to wake up at 4:30 and heat his milk in his sippy cup so that when he woke up at 5:00 it would be exactly the right temperature. If it was too hot or too cold, he would take one sip from the cup, hurl it across the room and rage so loudly that it would wake Claire up, so that at three minutes after 5:00, I would be crying, Claire would be crying and my husband would be crying.”
She and her husband took James to a pediatric psychopharmacologist, who prescribed Risperdal, one of a new generation of antipsychotic drugs that have become popular for treating children with rage and aggression because it can blunt their anger and calm them down. These so-called atypical antipsychotics are less likely to cause abnormal movements and muscle stiffness than the earlier antipsychotics, but they can still prompt enormous weight gain and put children at risk for diabetes. Since James was underweight and oblivious to food, Mary and her husband were willing to take the risk.
“So we give him the Risperdal drops before bed, and he wakes up the next morning and he says: ‘Good morning, Mommy. I’m hungry. Could I have something to eat?’ I wake my husband and I say: ‘James is different. The medication is working.’ That day at noon, the Risperdal wore off, and he became angry, miserable, mean, frightening — everything he was before.”
But even with Risperdal and a shadow, James struggled in his second year of pre-K; with his anger under control, his attention problems became more visible. “He could not stay on tasks,” Mary said. “He couldn’t stick with anything. He’d go to the drawing table and make one scribble. . . . He was hopping around.” James’s condition was diagnosed as Attention Deficit Hyperactivity Disorder, a problem that is said to afflict between 3 and 7 percent of American schoolchildren. Normally A.D.H.D. is treated with stimulants like Ritalin, which can temporarily improve focus, but the two stimulants his doctor tried made James nasty and angrier, and he couldn’t stay on them. In first grade he moved to a school for children with special learning needs, but by second grade he was having trouble even there. “He would cry every morning, and cry and cry and cry,” Mary said. “I now realize that that was depression.”
Home life was almost unbearable. “I couldn’t bring them to a playground together, because if he got behind Claire on the slide, he would push her down. If she walked by, he put out his leg to trip her. If they were watching TV and he became overstimulated, he would kick and punch her. . . . There’s never been a dinner hour; he’d push her plate. He didn’t like the way she was chewing. He’d rage. We never had any family meals. No family trips. Ever.”
As often happens with children on psychotropic drugs, James’s behavior began to “break through” the medication, requiring more and eventually different combinations of drugs to contain it. Along with the Risperdal, he eventually went on Depakote, one of several antiseizure drugs that are also used as mood stabilizers. Depakote was ultimately replaced with Lamictal, another antiseizure drug, and the Risperdal gave way to Abilify, another antipsychotic drug.
In spring of third grade, Mary was walking James and Claire home from James’s school when he demanded a lottery ticket. She refused to buy him one. “He started to scream and yell and rant and rave on a busy corner. We were crossing the street and the light was changing. Coming down 75th Street I saw this big white Hummer. James said to me as we were crossing the street, ‘If you won’t buy me a lottery ticket, I don’t want to live.’ He stood in the middle of the street and he faced the Hummer down. And the Hummer pulls over and the guy gets out and starts screaming.” At the psychiatrist’s office the next day, “James is speaking really fast and he’s mounting my leg like he’s in sexual overdrive,” Mary recalled. Pressured speech and hypersexuality are symptoms of mania. Shortly thereafter, when James was 8, his condition was diagnosed as bipolar disorder.
Later on the April afternoon I spent in their apartment, Claire was on the family computer visiting her favorite Web site, JibJab, when James came over and stood beside her. “Can I start it over, please?” he said.
“That’s nice asking, James,” Mary said. Claire replayed the video, and the children laughed, watching it together. A few minutes later, Claire came to her mother on the couch and put her arms around Mary’s neck. James followed, draping himself across his mother’s legs. Mary mentioned that she was concerned about some of the language she’d just heard on the video and mused aloud over whether to adjust the Internet filter to block JibJab out. “Mommy, please keep that one,” Claire implored. “That’s the only one James and I watch.” When Mary relented, the children cheered, seizing each other’s hands in a rare show of unity. A moment later, Claire, still giggling, said, “Ow.” James had pushed or hurt her somehow. “Ow, ow!” she cried, in real pain now.
“That hurts her, James,” Mary said.
“Get away,” Claire screamed. “Now!”
The children began to roar at each other. Mary took charge: “Don’t hit. Let’s separate our bodies.” Then, almost with surprise, she said, “We were having a nice moment.”
Last fall, James started fifth grade at a school designed to accommodate emotional as well as learning issues. It has a contract with the New York City Department of Education, which means that city children attend free as long as the D.O.E. deems them in need of its services. The first parent conference, last fall, was sobering for Mary and her husband; the combination of A.D.H.D. and anger was making it hard for James to function even in this new school. “He can’t start, he can’t stop,” she paraphrased. “He can’t sit in his seat. He can’t stop interrupting. He’s constantly provoking his classmates. He’s basically barely teachable. . . . It was like someone punched me in the side of the jaw.” Mary went to James’s psychiatrist for help. “I thought I was finally going to walk away with Ritalin,” she said. “Instead, we walked out of that office with lithium.”
Lithium is one of the oldest and most reliable mood stabilizers, but it’s a serious and potentially toxic drug, requiring regular blood draws to make sure that it isn’t becoming too concentrated. It can have unpleasant side effects: tremors, weight gain, acne and thyroid problems in the short term; kidney damage in the long run. But Mary and her husband felt they had little choice. And the lithium, which James took along with his other medication, helped. James settled down in his new school and began to learn, and even to make friends. He was happier. At which point Claire, perhaps in a delayed reaction to trauma dating back to when she was small, became hysterically intolerant of her brother. “The latest edict from the therapist is that Claire’s allowed to take her food and go in the TV room and eat by herself,” Mary said. “And now she’s eating three meals a day in there.”
James’s psychiatrist was planning to raise his lithium dose until he was fully stable, and then to try adding a stimulant to help with his A.D.H.D., so he could concentrate better in school. Mary’s hopes were riding heavily on this plan; lately, James’s psychiatrist had been floating the idea of a residential school for James as a possible solution to his learning issues and conflicts with Claire. Mary and her husband badly wanted to keep him at home.
 “I used to cry five times a day, and now maybe I only cry once or twice,” she told me, her usual upbeat practicality briefly giving way to emotion. “So it’s better, you know? It’s better now that I don’t pick him up at school, and he doesn’t rage at me in front of all the other parents. He can rage when he bursts in the door, so no one sees how awful it is. It’s like a dirty little secret. It’s like having a husband who beats you, only it’s a kid. It’s your own.”
A study last fall measured a fortyfold increase in the number of doctor visits between 1994 and 2003 by children and adolescents said to have bipolar disorder, and the number has likely risen further. Most doctors I spoke with found the “fortyfold increase” misleading, since the number of bipolar kids at the beginning of the study was virtually zero and by the end of the study amounted to fewer than 7 percent of all mental-health disorders identified in children. Many also said that because bipolar children are often severely ill, they can proportionately account for more doctors’ visits than children with other psychiatric complaints, like A.D.H.D. or Anxiety Disorder. Still, nearly every clinician I spoke to said that bipolar illness is being overdiagnosed in kids. In Leibenluft’s studies at the National Institute of Mental Health, only 20 percent of children identified with bipolar disorder are found to meet the strict criteria for the disease. Breck Borcherding, a pediatric psychiatrist in private practice in the Washington area, said: “Every time one of my kids goes into the hospital, they come out with a bipolar diagnosis. It’s very frustrating.”
There are many possible reasons for the sudden frenzy of pediatric bipolar diagnoses. First, a critical shortage of child psychiatrists, especially in rural areas, means that many children are being seen by adult psychiatrists or — more often — by family doctors, who may lack expertise in child psychiatry. Managed care usually pays for a single, brief psychiatric evaluation (and it strictly limits the number of therapy appointments a year) — not nearly enough time, many say, to accurately diagnose a condition in a mentally ill child.
Then there is “The Bipolar Child,” a successful book published by the psychiatrist Demitri Papolos and his wife, Janice, in 1999, and referred to by more than one parent I spoke to as a “bible.” The Papoloses’ description of pediatric bipolar disorder was amassed partly by using responses to an online questionnaire filled out by hundreds of parents on an electronic mailing list, who said they believed their children were bipolar (and who often had strong family histories of the disease). The Papoloses’ diagnostic criteria include some idiosyncratic items — a severe craving for carbohydrates, for example — that are found nowhere in D.S.M.-IV. Nevertheless, many parents walk into doctors’ offices having already read “The Bipolar Child” and concluded that their children are bipolar. Because doctors rely heavily on parental reports when diagnosing disorders in children, these “prediagnoses” may have an impact on the outcome.
And of course, there are pressures and blandishments from the pharmaceutical industry, which stands to profit mightily from the expensive drugs — often used in combination — that are prescribed for bipolar illness, despite the fact that very few of these drugs have been approved for use in children.
For all the possible overdiagnosing of pediatric bipolar disorder, however, many in the field also say that a lot of truly bipolar children who could benefit from therapy are falling through the cracks. This is a critical issue; studies clearly show that the longer bipolar disorder goes untreated, the worse a person’s long-term prognosis. Between 10 and 15 percent of those suffering from bipolar disorder end up committing suicide.
Some studies suggest that bipolar disorder may actually be on the rise among young people. One intriguing hypothesis involves a genetic phenomenon known as “anticipation,” in which genes become more concentrated over generations, bringing a stronger form and earlier onset of an illness with each successive generation. Another theory is “assortative mating,” in which a more mobile and fluid society, like ours, enables the coupling of people whose mutual attraction might be partly due to a shared genetic disposition to something like bipolar disorder, thus concentrating the genetic load in their offspring.
Given these uncertainties, how does a doctor go about diagnosing bipolar disorder in a child? To understand that process, I spent several days at the Child and Adolescent Bipolar Services Clinic at the Western Psychiatric Institute and Clinic of the University of Pittsburgh Medical Center, the largest clinic in America devoted specifically to treating and studying children with bipolar disorder. It has about 260 active patients, most of them from Pennsylvania, eastern Ohio and West Virginia, and it evaluates between one and five new cases each week. It accepts managed care, meaning it operates at a loss, which is absorbed by the medical center. (Many child psychiatrists in private practice, who charge as much as $400 an hour in New York, accept no insurance; families who can afford to lay out these sums must collect what they can from their insurers after the fact.)

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