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Diagnosing Joey

Before he was even born, Tina Wiseman called her son Joey. Not because of his given name, which was to be James, or as a tribute to a relative or friend. No, it was the way he ricocheted from one side of her belly to the other, somersaulting and lunging, bouncing and swerving, constantly and almost without pause. It reminded her of a kangaroo.

“I don’t think he slept the entire pregnancy,” she recalls, and then catches herself. “There was one time, late in my pregnancy, when he was quiet. I thought something was wrong, so my husband Scott touched my belly and he started kicking, and Scott said, ‘Oh, he’s there.’”

It was her second pregnancy – daughter Katie was born four years earlier, just as perfect and healthy as Joey. There was no reason to suspect that, after Joey joined the family, normal daily life wouldn’t resume again. Except it didn’t.

First of all, Joey never seemed to sleep. “He’d have a couple of hours of sleep and he’d be ready to go – maybe he’d have a 30 minute nap – there was just no stopping this child,” Wiseman says. Add to that behavior that was just plain unsettling. At the age of 3, Joey slipped out of the house around 5 a.m. and showed up on a neighbor’s doorstep. At 4, he had problems getting a good night’s sleep because he couldn’t stop moving long enough to relax. During the day, his attention span was about five minutes, and that was when he liked something. He’d get frustrated if there were fewer than a handful of games and activities going on at the same time.

But what concerned Wiseman the most was how agitated and aggressive he could become. “I understand kids trying to get to milestones, but the least little thing would set him off,” she says. Whereas a typical toddler might get frustrated while building a tower of blocks and knock it down, Joey would knock it down and then take one of the blocks and take aim for someone.

Then there was the scissor incident.

He was at daycare when he started feeling frustrated. “The next thing [the teachers] knew, he had scissors and he was going after another little boy,” says Wiseman. “They understood he was different, and they worked with me. But after that, they said, ‘This is not working.’”

That was the end of daycare. Wiseman continued to work days as an account specialist for an insurance company while husband Scott, a warehouse supervisor, picked up the night shifts so someone could be home with Joey at all times. In between the shifts and the parenting and the housework and the worrying, Wiseman began the long process of determining exactly what kind of demon had taken hold of her beautiful little boy.

It would take nearly three years of doctor visits, medical testing and self-guided research before Wiseman got her answer: pediatric bipolar disorder.

Bipolar Basics
Bipolar disorder, sometimes called manic depression, afflicts the brain and is marked by extreme fluctuations in mood, energy, thinking and behavior. When it affects kids, bipolar disorder is often preceded by the terms “early-onset” or “pediatric.” A common shorthand for bipolar in both adults and kids is “BP.”

There is no cure – only ongoing, lifelong medical and behavioral management. Similarly, there is no blood test or brain scan that can detect the disease. The Diagnostic and Statistical Manual of Mental Disorders, or DSM IV, the gold standard for psychiatric disease diagnoses in American medicine, only includes BP criteria for adults, not children.

In fact, the diagnosis was rarely even made in children until recently. Many credit the 1999 book The Bipolar Child, written by Demitri F. Papolos, M.D., and Janice Papolos, with sounding the alarm within the psychiatric community about what these children had been suffering through, both within the chemistry of their own brains and as a result of medical mismanagement. (The book has since sold more than 200,000 copies and is in its third edition.)

In 2001, an article that appeared in the Journal of the American Academy of Child and Adolescent Psychiatry concluded that it was indeed possible for children to be diagnosed with the disease – a revelation that in 2002 made it to the forefront of the public consciousness via Time magazine in a cover story called “Young and Bipolar.” Since then, doctors have increasingly recognized that BP symptoms can arise in young children – sometimes as early as infancy.

Just how many American children suffer from BP isn’t known, but the Child and Adolescent Bipolar Foundation (CABF) cites several studies suggesting a “significant proportion” of the 3.4 million children and adolescents who experience depression may actually be experiencing the depression-like symptoms associated with pediatric bipolar disorder. According to a 1993 survey of BP adults by the National Depressive and Manic-Depressive Association, some 59 percent report that symptoms of their illness appeared during or before adolescence.

While the identification of the disease in children is certainly progress, diagnosis remains a factor of skill. And, competent medical professionals can disagree on the conclusion.

“It is purely a clinical diagnosis at this point, made by careful evaluation of the child,” says Dr. Kirti Saxena, a child and adolescent psychiatrist at Children’s Medical Center Dallas who specializes in the disease. Saxena, also an assistant professor of psychiatry at UT Southwestern Medical Center, started a program for pediatric bipolar diagnosis and treatment within Children’s child psychiatric outpatient clinic.

In adults, psychiatrists look for very clear manifestations of mania and depression, like an elevated euphoric or irritable mood, or a decreased need for sleep that take place over a period of time totaling seven days. “In children, though, you are not going to always get seven days of very identifiable changes in mood. It’s not going to be as clearly defined as in adults,” Saxena says.

Instead, she says, doctors must look for clues that take place over days, weeks or even months. Saxena takes into consideration not just what happens during the clinic evaluation, but also the observations of those who spend significant time with the child, like parents, teachers and daycare providers. She also looks at how these clues combine – whether they’re present alone or in conjunction with other indicators like sleeping problems – before drawing her conclusion.

Genetics do play a role. While no specific gene for BP has been identified, studies indicate that the disease runs in families. According to statistics from the CABF, the general population faces a 4 to 6 percent risk of having a disorder along the BP spectrum. But if one parent has the disease, that number shoots to 15 to 30 percent. If both parents have the disease, a child has a 50 to 75 percent chance of having it too. But genetics alone doesn’t explain the incidence of BP – nor is it determinative of a diagnosis.

Assessing Behavior
While most children certainly have their moments, Saxena cautions that the truly bipolar child’s troubles extend far beyond mere “terrible twos” or an occasionally aggressive temperament.

One important clue is irritability. Parents often describe a feeling like they’re walking on eggshells, where little things that cause annoyance and mood changes – say, from acting silly to feeling annoyed – cycle very quickly. Another behavior often displayed by BP kids is recklessness (think climbing on a roof or running into traffic), which shows a state of mind that doesn’t understanding what’s dangerous, Saxena says.

“One of the main things to remember is that functioning is very significantly affected for children with bipolar disorder, both socially and academically; it’s hard to maintain good grades, hard to maintain friends and the family feels it’s very difficult to take the child anywhere because the mood is very up and down,” she says.

Even if a child comes to the clinic with all these problems, he still may not be bipolar. That’s because many of the symptoms associated with BP can also suggest other psychiatric, neurological or developmental issues such as depression, obsessive-compulsive disorder and oppositional-defiant disorder.

“Because all of these diagnoses have commonalities, you have to tease out the symptoms and the timeframe,” Saxena says, for each has a different method of treatment. Sometimes – all too often, say parents of BP kids – the diagnosis is missed entirely.

Autism was the diagnosis that the Wisemans got for Joey, after an initial diagnosis of bad parenting, Wiseman says. Some doctors she called refused to see Joey because they said he was too young, another pulled out his prescription pad without even talking to him – prompting the Wisemans to walk out. Then, Joey was given the treatment of severe attention deficit hyperactivity disorder (ADHD) and began taking Ritalin, which could not have been a worse drug for him.

“In a child with ADHD, this drug speeds them up to slow them down. But for Joey, a bipolar kid, he just kept going and going,” Wiseman says. “He ended up throwing a croquet ball through his window, he attacked the dog and at one point just looked up at me and said, ‘Mom, make it stop.’”

Nonetheless, children do get diagnosed. In the two years since she opened her bipolar disorder clinic, Saxena estimates it’s enrolled between 65 and 70 families and has evaluated “at least that many” children. Every week, she says, the clinic evaluates between three to four more children and treats about 50 children who have the disease.

What did kids do before the existence of a pediatric bipolar disorder diagnosis? They best they could, it seems. They’d go through life labeled as the “mean kid,” the “problem child” or worse: They’d be dead. Left untreated, according to the CABF, sufferers risk drug and alcohol addiction, failed relationships, school failure, difficulty finding and holding jobs, and even suicide. The lifetime mortality rate from bipolar disorder from suicide is higher than that of some childhood cancers.

No Single Pill
There is no silver-bullet course of treatment for BP, no single pill that will knock it out or keep its demons at bay. Until that pill is developed, day-to-day management of the disease requires a balance of behavior-oriented therapy and prescription medication.

Finding the correct combination, or cocktail, of drugs is much more involved than simply filling a prescription. Saxena doesn’t mince words: “We don’t expect the first medication will be effective,” she explains. It can take up to several months to get the right drug, the right combination of drugs and the correct dosage of those drugs.

For Dallas mom Lisa Pedersen, lithium was the drug that she says literally gave her son a life. “He responded very quickly and continued to get better and better,” says Pedersen, who serves on the national board of CABF. His treatment is a cocktail he takes daily made up of a mood stabilizer, an antipsychotic and an antidepressant. “If he didn’t have these meds, he would be in jail or dead, because that’s where he was heading,” she says.

But, like so many BP children, Pedersen’s son wasn’t given these drugs immediately. The diagnosis itself took about 10 years.

“He was typical for a kid who was suffering: When he was 3, he’d have extreme temper tantrums over nothing, starting first thing in the morning and lasting all day, with sleep problems,” she recalls. “It wasn’t until he was so sick, suicidal and psychotic and we hospitalized him that we got the diagnosis.” Now, she says, “I look back on all of it and I think, ‘I can’t believe we lived through that.’”

Through her advocacy role with CABF, Pedersen often talks with parents who are in the position she once was in, and she counsels them to expect the medication process to be a long one. “My son just graduated from high school last month, and there were a lot of times where we never thought that was going to be possible; junior high was a wash, and he was just such a sick kid,” she says. “But he did get better, and these kids can get better with the right treatment.”

In the meantime, it’s not just the child who must hang in there; it’s the family, too. And part of that includes devising strategies to deal with daily life, like recognizing mood symptoms and regularizing sleep routines. “It sounds basic, but for families who are overwhelmed, it helps,” Saxena says.

Pedersen agrees. “These parents have been dealing with this for years,” she says. “People don’t understand the intense reality of dealing with these kids.”

Beyond the Diagnosis
For Amy A. Sosa, parenting a BP kid isn’t just her life, it’s also her life’s work. As the founder and principal of All About Achievement Consulting, the Dallas-based advocate works with Texas families of children with a myriad of disabilities, helping them navigate life with the disease.

“When a parent gets a diagnosis, there are many stages they go through, like denial and grief,” she says. “When they get to acceptance, that’s when the learning process starts: ‘What do I have to know and how do I have to fight for what services are out there?’”

While Sosa works primarily with educational issues, she also says parents encounter difficulty when it comes to insurance coverage, whether it’s private insurance or Medicaid.

But the single most important advice she gives to parents of BP kids is that they are not alone, and they shouldn’t try to deal with it alone. “You need the support of others, from the immediate family, from friends, from individuals within your religious community, and, if you can, you need to access individuals with knowledge on how to navigate the system,” she says.

Many discover that support can be as close as their computers, via online support groups like the Texas Parents of Bipolar Children’s list serv. “Once you meet other families, you have instant friends who have been there,” Sosa says. “They can be your therapy, your emotional support and also your educational support, helping you travel the road ahead of you. Because it’s a long road.”

Justifying the journey, of course, is the knowledge that bipolar children can be just like other children. So long as they maintain their treatment, Saxena says, there is no limit to what they can achieve: “They can do well in school, they can get married, they can have kids. They can do all that,” she assures.

And Joey seems well on his way. He’s going into fifth grade, and he’s doing well in school and at home. Wiseman admits she still keeps her guard up – and her kitchen knives hidden – but she feels he’s finally reached a point where he’s stable.

“When he’s on track, there is a sweet, loving boy in there who is full of hugs and eager to please,” Wiseman says. Her enthusiasm is evident when she talks about Joey’s talent for sports, his love of Hot Wheels and even the unique card he made this past Father’s Day by gluing dried pasta onto a poster board. “We have good days, and we have bad days,” she says. “But now we also have moments where it’s like, ‘That was a wonderful day.’”

Jenny B. Davis is a mother, freelance writer and most recently the author of The U.S. Supreme Court Coloring & Activity Book.