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03-04-05, 01:44 PM
Bipolar illness strikes babies too

The Washington Post
Feb. 17, 2005 04:30 PM

From the time her son was born, Jennifer DeWeese said, she suspected something was wrong. As an infant he cried inconsolably and slept mostly in hour-long snatches. At 3, he was always irritable and had prolonged tantrums triggered by the slightest change in his routine.

A therapist told his mother he was emotionally disturbed and suggested she read a popular book about childhood bipolar disorder. A year later a child psychiatrist in Virginia Beach, Va., made the diagnosis: the 4 1/2 year old was manic-depressive.

A few months later, when his even-tempered sister grew moody and volatile, DeWeese took her to the same psychiatrist. They sat down with DeWeese's well-thumbed book about bipolar children and went through its symptom checklist. Based largely on those results and the family's history - DeWeese said she learned during her divorce that the children's father had been diagnosed as bipolar in high school - the psychiatrist told DeWeese her 5 1/2-year-old daughter was bipolar, too.

"I feel relieved to know there is something causing their symptoms and something we can do about it," said DeWeese, 34. She is convinced, she said, that her children's problems are inherited, not a reaction to their father's permanent departure, a bitter divorce marked by allegations of spousal abuse, a bankruptcy that resulted in the loss of the family's house and car, DeWeese's frequent hospitalizations for kidney disease and the arrival of a new stepfather.

Now 6 and 8, DeWeese's son and daughter exemplify a trend that is roiling mental heath: the burgeoning number of children diagnosed with bipolar illness, also known as manic depression, which affects about 2.3 million Americans.

The illness, which is usually diagnosed in adolescence or early adulthood, is a serious and disabling mood disorder that, if untreated, carries an elevated risk of suicide. Sufferers typically cycle between manic highs, in which they can go for days without sleep in the grip of grandiose delusions, and depressive lows, marked by a preoccupation with death and feelings of worthlessness.

There is no test for bipolar illness, which is believed to result from a poorly understood interplay between genetics and environment. Although the disease runs in families, according to the National Institute of Mental Health (NIMH), most children with one bipolar parent won't develop the illness. Their risk is about 10 to 15 percent compared with 1 percent among the general population. NIMH officials say there are no reliable statistics on the risk posed by having two bipolar parents.

Statistics documenting the increase in pediatric bipolar diagnoses are elusive, but a dozen psychiatrists and child psychologists interviewed for this story say there have been sharp increases in the past decade. Before that, the illness was rarely diagnosed before adolescence.

Although definitive answers about the disorder in children await the results of several NIMH-funded studies currently under way, many doctors aren't waiting. Proponents of early intervention say that aggressive treatment can limit the damage of untreated mental illness.

As a result, some preschoolers barely out of diapers are being treated for bipolar disorder with powerful drugs, few of which have been tested in children.

At Dominion Hospital in Falls Church, Va., which houses the Washington area's largest inpatient psychiatric unit for children, psychiatrist Gary Spivack said patients as young as 4 have been hospitalized, sometimes for a few weeks at a time. "They're just so out of control that almost nothing else has the power to do it," Spivack said, who adds that many were being raised in highly dysfunctional homes.

But some experts say the surge in diagnoses is a dangerous fad - one critic called it "psychiatry's flavor of the month" - a decision too often based on skimpy evidence, cursory evaluations and incorrect assumptions about genetic risk.

These children are troubled, critics say, but most don't meet psychiatry's official diagnostic criteria for the lifelong psychotic disorder.

"Labeling severe tantrums in toddlers as a major mental illness lacks ... validity and undermines credibility in our profession," warns Jon McClellan, associate professor of psychiatry at the University of Washington, in a forthcoming article in the Journal of the American Academy of Child and Adolescent Psychiatry. "The illness has become a cultural phenomenon, adorning the cover of Time magazine and headlining national news broadcasts."

It has also spawned numerous Web sites and more than a dozen books mostly aimed at parents. Two of them are written for children, including "Matt: The Moody Hermit Crab," whose main character winds up in a mental hospital after he tries to stab his family with a kitchen knife.

Joseph Biederman, a professor of psychiatry at Harvard and one of the most forceful advocates of the aggressive treatment of preschoolers, thinks bipolar disorder has been "severely under-diagnosed" in children.

He likens the criticism he has encountered to the outrage that greeted Galileo's challenge to the notion that the Earth was flat.

"The diagnosis is controversial only because it has been assumed not to exist," said Biederman, chief of pediatric psychopharmacology at Massachusetts General Hospital.

In his view there are clear-cut symptoms that distinguish bipolar disorder from attention-deficit hyperactivity disorder (ADHD), with which it is often confused, or other problems. He said studies have found that bipolar children are severely agitated and aggressive, grandiose (they tell the teacher how to run the class or think they have the same authority as a parent), hypersexual (one report cites children who imitate sexy rock stars or use explicit language) and experience very rapid mood swings, sometimes several times an hour, during which they can become explosively angry.

"These are very disturbed children that are a nightmare to treat," said Biederman, who estimates he has seen nearly 100 of them: 3 year olds so assaultive their parents feared for their safety; 5 year olds who downloaded pornography from the Internet; and preschoolers who literally tore apart his office during a consultation.

"These symptoms are not subtle," he said.

Maybe not, said Washington psychiatrist and lawyer Wayne Blackmon, but they are also suggestive of a host of other problems: depression, anxiety, abuse, ADHD or a behavioral problem such as conduct, explosive or oppositional defiant disorder.

"With kids, especially little kids, all disorders pretty much look alike," added Blackmon, a former president of the Medical Society of the District of Columbia. "Kids tend to behave by lashing out and acting out."

Experts on both sides agree that the 1999 publication of "The Bipolar Child" had a galvanizing effect. Supporters of early diagnosis and treatment say the book empowered parents and informed clinicians. Critics say it is rife with pseudoscience and exaggeration.

Written by New York psychiatrist Demitri Papolos, research director of the Juvenile Bipolar Research Foundation, and his wife, Janice, the book has sold more than 100,000 copies and led to the couple's appearances on "Oprah" and NPR's "Morning Edition." It is the book DeWeese said she relied on and the one the Virginia Beach, Va., psychiatrist used in diagnosing her children.

"This book revolutionized child psychiatry," said Washington University in St. Louis psychiatry professor Barbara Geller, who called it "data-free" and "very controversial."

Geller said she thinks the book had a positive influence because parents read it "and began pouring into child psychiatry clinics" for help.

"When I give talks now, it's a very different response than five or 10 years ago," said Geller, who is conducting a long-term study of bipolar children funded by NIMH. "The reaction used to be, 'I don't really believe it's out there.' " Now, she said, the question she hears is, "How can I recognize it?"

The 419-page second edition is replete with anecdotes, many of them desperate parents' postings from Web sites. It lists famous people the authors say were bipolar, including Abraham Lincoln, Ludwig van Beethoven and Teddy Roosevelt. And it describes what the authors call "ultra ultra rapid cycling" - mood swings that occur as often as every few minutes throughout the day, a phenomenon some child psychiatrists say they have never observed.

Among the book's most controversial features is its list of more than three dozen symptoms commonly seen in bipolar children, including silliness, separation anxiety, night terrors, carbohydrate cravings, fidgetiness, extreme bossiness, bed-wetting, lying, social anxiety and difficulty getting up in the morning.

"That book cast such a wide net that everyone is being called bipolar," said Parmajt Joshi, chief of psychiatry at Children's National Medical Center in Washington. "There are too many kids whose parents read the book and come in and say, 'I think my kid has this,' when they don't. "We see that a lot."

Houston child psychiatrist Laurel L. Williams says she has "un-diagnosed" between 50 and 75 children in the past few years who had been declared bipolar by other physicians, mostly psychiatrists. Last April she published a study in Psychiatric Times detailing the cases of three preschoolers whose symptoms resulted from communication disorders, not manic depression.

Papolos said he doesn't believe his book has contributed to misdiagnosis.

"If they read our book, I think they see a symptom picture in their children that is fairly comprehensive," he said.

Some desperate parents, who have struggled for years with their children's problems and an acute shortage of mental health services, say the book's descriptions resonated with them and they found its take-charge tone reassuring.

"I was relieved because it made sense," said Elise Cohen of Rockville, Md., a medical librarian whose daughter was diagnosed last year at age 10. "If we have a diagnosis there are treatments, even if it's not what you want to hear."

Until recently, many doctors were reluctant to prescribe the powerful mood-stabilizing drugs adults take for bipolar disorder to young children, whose central nervous systems are still developing. Most of these drugs - which can have serious and sometimes life-threatening side effects, including diabetes, significant weight gain, hormonal problems that can cause infertility, and fatal blood disorders - have not been tested in children. Some are epilepsy drugs used to control seizures and not approved to treat psychiatric disorders, which are widely used anyway because some doctors think they are effective.

Resistance to using medications has softened, experts say, for a variety of reasons: aggressive marketing by pharmaceutical companies; the skyrocketing use of drugs in preschoolers to treat ADHD and depression; a lessening of the stigma surrounding bipolar disorder spurred by the accounts of celebrities such as Ted Turner and Jane Pauley; and an insurance system that rewards brief appointments to check medication over time-consuming diagnostic evaluations and behavioral therapy.

The realization that "these are biological illnesses that require biological treatment and that you don't have to let these kids suffer" is relatively recent, said Martha Hellander, a lawyer and the founding executive director of the 6-year-old Child and Adolescent Bipolar Foundation (CABF), an influential advocacy group based in Illinois. Hellander said the nonprofit foundation, which has 25,000 members, receives funding from several drug companies.

Medications are a cornerstone of treatment, Hellander said, even for very young children. She said the youngest patient she's heard of is an 18-month-old girl who was diagnosed as bipolar largely because she screamed incessantly and had a bipolar mother. Hellander said the baby was medicated with lithium.

Most children take at least three drugs simultaneously to control their moods and alleviate depression. Some try dozens of combinations and doses.

DeWeese said her daughter, who has tried more than half a dozen drugs, some of which made her act like "a raging maniac," currently takes Abilify, an antipsychotic primarily used to treat schizophrenia in adults.

Recently, DeWeese said, the dose had to be cut after the 8 year old started drooling and one side of her face drooped.

Hellander said parents are often asked how they can give these drugs to their children. "We don't have any choice," she said, comparing them to lifesaving chemotherapy. "Most of us are grateful these medications exist. In earlier days our children would have been institutionalized."

But Blackmon said the drugs can cause the very symptoms they have been given to treat: hyperactivity, insomnia and even psychosis.

"There's a lot of throwing medications at people without thinking about what the problem is," he added. "Once somebody has a label, it is highly unlikely that label will be questioned. And by the time a person has been on 20 different drugs, you can no longer figure out what's wrong."

Donna DeHart Burson agrees. Her 13-year-old daughter has taken more than a dozen drugs since her diagnosis several years ago. "If one doesn't work, the doctors' answer is to just keep adding more and more medications" or increasing the doses, said Burson, who lives near Winchester, Va.

Many parents say that a bipolar diagnosis meant they were no longer blamed for their children's behavior.

"At first he only had meltdowns in front of me," recalled Rebecca Goolsby of Springfield, Va., a Navy scientist whose son was diagnosed last year at 5. "Everyone told me it was me, that I was just not handling him well. It was the most horrible thing to sit there every day and have people telling you that."

"It is not a parenting issue," said Karen Leatherdale, of New Brunswick, N.J. She said she finds it hard to ignore the stares when her 6-year-old son, diagnosed at 3, has a meltdown in Wal-Mart. "We can't stop this from happening. It is nothing we can control or the child can control."

The University of Washington's McClellan has a different view.

"There are a lot of kids who have problems regulating their behavior," he said, but he is concerned that the singular focus on drugs may give short shrift to behavioral strategies or personal responsibility.

"There's something very seductive about being told that your kid has a neurobiological disorder and needs to be medicated," said McClellan, who is chairing a committee on pediatric bipolar disorder for the American Academy of Child and Adolescent Psychiatry. "It lets people off the hook."

McClellan, who directs a state hospital program for children, said that proper treatment requires a careful diagnostic evaluation. Such an evaluation can take four hours or more and includes interviews and observations of the parents and child, psychological testing, a physical exam, detailed family history and information from teachers, coaches, day care staffers and others who know the child.

But psychiatrists say that insurance reimbursement is skewed in favor of medication - and little else. A psychiatrist can make two or three times as much from an hour of medication checks than from an hour of therapy.

Although it's not discussed much, misdiagnosis can have a profound impact.

One woman, who agreed to be interviewed on the condition that her name not be published to protect her daughter's privacy, said that when the girl was 14, she was handed a prescription for lithium after a single visit to a psychiatrist. Four years later, doctors discovered that her severe depression and mood swings were the result of an undiagnosed pituitary tumor.

"She's really angry at the doctors and at me because I accepted the diagnosis too fast," the woman said. Her daughter, she said, "barely got through high school" and had side effects from the lithium, which made her hair fall out.

Now 19, she said, her daughter is caught in a Catch-22: Because the family was open about her diagnosis, she feels the need "to tell everyone she's not bipolar. And the reaction she's encountered is not what she thought. It's, 'Oh sure, the bipolar doesn't think she's bipolar.' "

09-21-08, 09:49 PM
Bravo on submitting this article. A great resource for many.