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Parents must become experts in illness

The Patriot Ledger


Not many clinicians do psychiatric diagnoses, medication treatment for children

The Patriot Ledger

If you are the parent of a bipolar child in New England, you know about Dr. Janet Wozniak.

As director of the Pediatric Bipolar Clinical and Research Program in pediatric psychopharmacology at Massachusetts General Hospital, Wozniak is one of what parents say are far too few clinicians who are able to diagnose young children with bipolar disorder.

“There really is a shortage of child clinicians of all sorts,” Wozniak said. “To find someone who does psychiatric diagnoses and medication treatment is very hard. And even among that group there are still individuals who aren’t trained or are prejudiced against (diagnosing) bipolar disorder.”

In 1995, Wozniak helped author a study that showed bipolar disorder in children was more common than previously thought - about 16 percent of children being seen at Mass General’s psychopharmacology program had the disease.

“There had been a lot of reports” about the emergence of the illness in children, she said, “but the idea that it made up a significant portion of our clinical referrals was a dramatic finding.”

There are no definitive studies and few statistics on how common bipolar disorder is among children, but several studies have estimated it effects one out of 100 children in the general population.

And the children with bipolar disorder tend be among the most impaired children she treats, Wozniak said.

“It’s 90 percent of our resources and headaches and worries. These are the kids who are using therapy, medication and hospital treatment,” she said.

Three-quarters of youngsters diagnosed with the disease are boys, even though in adults, men and women are about as likely to suffer from the illness.

The diagnosis of bipolar disorder in young children remains controversial in some psychiatric circles, in part because in children, symptoms are shared with other disorders.

Many children who are ultimately diagnosed with bipolar disorder are first treated for attention deficit/hyperactivity disorder. The two disorders share three major symptoms, Wozniak said: hyperactivity, talkativeness, and distractability.

A study conducted by Dr. Joseph Biederman, chief of clinical and research in pediatric psychopharmacology at Mass General also determined that about 20 percent of children with attention deficit disorder also have bipolar disorder.

Another difficulty in diagnosing the disorder, as with all psychiatric disorders, is that there is no blood test, brain scan or other test that can determine that a patient has the disease.

“Our tests are questions,” Wozniak said. “We ask questions and we try as much as possible to ask careful questions and to ask over time, and if possible, to get different perspectives.”

One 2-year old in a fit of rage found the strength to overturn and break a kitchen table. Other children avoided sleeping in their own rooms for years because they were terrorized by violent dreams. Some families considered splitting up to protect siblings from physical harm; other couples did split under the constant stress of dealing with their child’s bipolar disorder.

Parents of children diagnosed with bipolar disorder - some after years of being medicated for other illnesses - say the disease wreaked havoc on their families’ ability to lead a normal life. The only way they’ve been able to help their children, they say, is to become experts in the illness.

Mary Ann McDonnell is a nurse practitioner from Scituate and founder of STEP Up 4 Kids, a nonprofit organization that helps parents of bipolar children organize support groups.
GREG DERR/The Patriot Ledger
Mary Ann McDonnell is a nurse practitioner from Scituate and founder of STEP Up 4 Kids, a nonprofit organization that helps parents of bipolar children organize support groups.

Even while employing an arsenal of sophisticated research and advocacy methods, parents say, they face a lack of doctors qualified to diagnose or treat their children, too few psychiatric beds for the most severely ill children, and medications that often help only after months or years of trial and error.

After the overdose death of 4-year-old Rebecca Riley of Hull - who had been diagnosed at 2½ with bipolar disorder and attention deficit disorder, and was on three powerful medications - many observers said a bipolar diagnosis in such a young child strained the limits of believability.

Rebecca’s parents, Carolyn and Michael Riley, are being charged with murder in her death, accused of deliberately overdosing her with one of her medications. Her psychiatrist, Dr. Kayoko Kifuji, agreed to a temporary suspension of her medical license while regulators investigate the case.

Diagnosing a young child with bipolar is controversial even among child and adolescent psychiatrists who are considered experts in the disease. But parents whose children were ultimately diagnosed as bipolar say they noticed something seriously wrong with their children when they were very young.

They say the hunt for successful remedies for their children’s sometimes-violent behavior often took many years, multiple psychiatrists and many prescriptions before behavior improved.

One mother from Scituate said that when her son was only 2, it was obvious he had much less control over his emotions than other children had.

“When they would play, if something didn’t go his way, he was over and above, lunging, leaping, knocking them to the ground,” she said.

By the time the boy was in the third grade, he threatened to kill himself.

“I just couldn’t believe at 9 you could even think of something like that,” his mother said.

A West Roxbury mother said her son tried to stab her with a shard of a broken mirror, hit her with tennis rackets and acted so violently at home that “I would have to tell my daughter to run into her room and take the baby with her.”

Many of the parents interviewed for this story have college or higher degrees and attended conferences, participated in support groups and in some cases consulted with lawyers to help them battle for scarce state assistance for their children. They speak of questioning doctors when drugs didn’t work well and of changing doctors if they felt their concerns were not addressed.

“It becomes like the parents’ job to really figure out what is happening. It’s not just ‘the kid is going to go to school and everything is going to work out,’” said Susan Page-Thompson, a Scituate mother of a bipolar son. She facilitates Foundations, a program at South Shore Mental Health Services in Quincy that provides support to families of children with mental illnesses.

Rebecca O’Bannon, a mother from San Clemente, Calif., who has two sons with bipolar disorder, said she took her younger son to six different psychiatrists before she found one who helped improve his symptoms through a combination of drug and homeopathic therapies.

“The only reason I know exactly what’s happening with my son is because I take an extremely proactive approach,” O’Bannon said.

Confusing symptoms

According to parents of children with bipolar disorder and their advocates, one thing is clear: Children as young as Rebecca Riley was are rarely diagnosed with the illness, and those who have the disease often suffer through multiple incorrect diagnoses.

“Most of our families came with the same stories of being desperate for care and kids being misdiagnosed for years,” said Mary Ann McDonnell, a nurse practitioner from Scituate who is a founder of STEP Up 4 Kids, a nonprofit organization that helps parents of bipolar children organize support groups.

Often, parents say, their kids’ behavior is first diagnosed as a host of other disorders, particularly attention-deficit disorder.

Diagnosing bipolar disorder is complicated by the fact that sometimes children do have other disorders, including attention-deficit disorder, obsessive-compulsive disorder, learning disabilities or even developmental disorders related to autism.

Sometimes, symptoms of different disorders come and go. One mother from Vermont, who asked not to be identified, said her bipolar son was diagnosed at 21/2 with obsessive-compulsive disorder after a previous diagnosis of pervasive-developmental disorder, a neurological disorder related to autism.

The obsessive-compulsive behavior went away when her son was 5, the mother said.

“You can be in limbo with all these symptoms,” she said.

In many cases, parents said, their children were medicated for diseases for which they were incorrectly diagnosed, in some cases worsening their symptoms.

In particular, several parents said, they had significant problems with Ritalin, a drug commonly prescribed for hyperactive children.

O’Bannon said Ritalin and other medications her younger son received affected him so severely that he was eventually diagnosed as being psychotic before he was 6 years old.

“As soon as he began treatment for bipolar disorder, the psychotic symptoms stopped,” she said.

Lack of services

States vary in the level of services available for children with significant psychiatric problems, but parents from different states said they all met barriers to treatment and help.

“There is a shortage of child and adolescent psychologists and nurse practitioners anyway, and even fewer feel they have an expertise in pediatric bipolar disorder,” said McDonnell, who is a nurse practitioner.

Many states also have a severe shortage of inpatient psychiatric beds for children.

The mother from Vermont said she began searching for a residential placement for her son when he was 7 and had to bring him to the emergency room for the third time in a year because he’d become so violent.

“We had to take him out of state because there were no beds left in the state of Vermont,” she said. Her son went first to a facility in Springfield, Mass., then to a hospital near Boston, and then another hospital in Boston before she finally found a school in Connecticut that specialized in children with psychiatric illnesses.

A mother in Maine who’s 13-year-old son has bipolar disorder said she has been frustrated by services that were covered by the state, and then taken away when money dried up.

For two years, she had two mental health workers come to her home after school, one to work with her bipolar son and the other to help her other two children who suffered from the strains brought on by their brother’s disease.

After two years, however, she was told the family was no longer eligible for the help.

“They want to keep kids out of (institutions). They don’t want that so they’re trying to keep kids at home, but because of budgetary issues they’ve cut all those funds,” for in-home services, she said.

Some kids do heal

Several parents of children in their late-teens or early 20s said that with years of therapy, medication and other help, their children are on their way to having full, productive lives.

The mother from Vermont said that the Connecticut school helped teach her son the coping skills he needed. Although he’s still on medication, he owns a car, has a girlfriend and plans to go to technical school after he graduates from high school.

The West Roxbury mother, who didn’t want to be named, said it took years to find the right medications for her son. He now goes to a Boston exam school and lives at home, she said. “If medications are used right they can really help kids,” she said.

Page-Thompson said that at 17, her son’s worst days appear to be behind him. He is doing well in a therapeutic school and plans to attend college in the fall.

“I’m just hoping for him to be as healthy as he can be. I hope that he’ll keep spreading his wings,” she said.

Julie Jette may be reached at