Experts Question Rise in Pediatric Diagnosis of Bipolar Illness, a
Serious Mood Disorder
By Sandra G. Boodman
Washington Post Staff Writer
Tuesday, February 15, 2005; Page HE01

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 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 in the
Washington area and elsewhere 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 underway, 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, 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.

'Very Disturbed Children'

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 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, 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."

Growing Acceptance of Drugs

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 mediation 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 six-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.

Don't Blame the Parents

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, 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.' "*

(c) 2005 The Washington Post Company



[Non-text portions of this message have been removed]