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Children of Rage and Sorrow — More children are battling mental illness

Web Posted: 03/19/2006 12:00 AM CST

Marina Pisano
Express-News Staff Writer

It's 3 o'clock and following her afternoon ritual, Kim Smith carefully places a little blue pill on the table in front of son Tyler, "the magic pill," she calls it, a talisman of the peace, healing and normalcy they both long for and seek every day.

Tyler, a thin, serious-looking boy with dark, short-cropped hair, just finished a weekly session with his therapist, and he has been spinning in a swivel chair and pacing the room at the Southwest Mental Health Center, in constant motion. He quickly downs the pill with a drink, and everyone waits the 30 minutes or so it takes to kick in.

This is only one talisman, one of 16 pills, half a dozen medications the 10-year-old takes every day. His condition was diagnosed as bipolar disorder, manic-depression, at 6 — his mother thinks he was sick long before that. He also has oppositional defiant disorder, ODD, and like about 90 percent of youth with bipolar disorder, he suffers from attention-deficit/hyperactivity disorder. He is on two mood stabilizers, along with the stimulant Adderall for the ADHD (the blue pill) and several sleep medications, the last because without them, he can go for days without sleeping. In addition to the psychiatric medications, he takes medicine for asthma and for severe migraine headaches that send him to his dark, quiet bedroom until the pain and nausea subside.

It's a mountain of trouble for a little boy to deal with, and even with medications and therapy, Tyler has terrible days, so bad that already in his young life, he has been hospitalized at Southwest 17 times, with several stays lasting 90 days.

Tyler's story is a disturbing glimpse into the far- from-carefree lives experienced by millions of American youngsters and their families dealing with serious illnesses such as major depression, bipolar disorder, a raft of anxiety disorders and, in very rare instances, even early onset of the devastating mental illness, schizophrenia.

Children of Rage and Sorrow

One in 10 children has a serious mental disorder; and researchers' findings show that some disorders are striking the very young.

Experts say early identification and treatment is vital. But the issue is not without its controversy.

Despite the stigma surrounding mental disorders, courageous parents came forward to share their stories.

San Antonio Express-News staff writer Marina Pisano and photographer Gloria Ferniz took a close look at the issue and the children who say, ‘there is a war raging in my brain.’

Read the series Children of Rage and Sorrow.

A Harvard Medical School researcher last year found that half of all cases of mental illness start by age 14, often with mild symptoms that go untreated and turn into serious disorders. According to the Surgeon General's Report on Mental Illness, one in 10 American children has a mental disorder severe enough to cause impairment.

The report lays out a public crisis in mental health care, including an acute shortage of child and adolescent psychiatrists and fragmented, limited treatment services, in which only one in five of these children gets the specialized care he or she needs. In some tragic cases, parents without the money or health insurance to cover needed psychiatric residential treatment are relinquishing custody of their children to state child protective services or the juvenile justice system to get them treated. About 250 families a year in Texas do this, according to the Mental Health Association in Texas.

Some specialists fear psychiatric disorders, which are linked to both genetic and environmental factors, are increasing in children. Perhaps most astonishing and controversial for many, researchers studying the early onset of depressive disorders and bipolar disorder are finding them in preschoolers — 3- to 6-year-olds. Clinicians tell of 5-year-olds with depression who talk about killing themselves.

Beyond the rage
When Tyler was just a toddler, he had raging temper tantrums with kicking and screaming that lasted for hours, episodes that went way beyond normal childhood tantrums.

By kindergarten, his condition was diagnosed as attention-deficit/hyperactivity disorder. But as his mother Kim Smith recounts, treating the ADHD with Ritalin only made his manic symptoms worse. He bloodied one child's nose and stabbed another kindergartener in the side with a pencil. After he was suspended for the third time for aggressive outbursts in first grade, she was desperate and camped out in the doctor's busy waiting room until he could see the boy. While they waited, Tyler kicked a patient. He was hospitalized at Southwest Mental Health Center, where his bipolar disorder was diagnosed. It was the beginning of help and understanding but not the end of Tyler's manic episodes.

He once wrecked a classroom, and he can be violent at home as well. "He has punched me. He has hit me. He has kicked me. He has bit me. You name it, he's done it," Smith says. "But I don't get mad. You just have to know that at that point in time, he's not in control of his body."

There are times she has to physically restrain the 10-year-old, sitting on him and holding his crossed arms down on his chest. And there are the calls at work from home or school when he's out of control.

Mornings are worst. Having gone all night without medication, Tyler is bouncing off the walls, and Smith needs to give him his pills immediately, so he is stable by the time he gets to school. As bad as the mania is, his depressive cycles are heartbreaking. "It's awful to see him so sad," his mom says.

He struggles with his emotions. "Sometimes I get mad over nothing, and sometimes I get mad at somebody who does something to me. A lot of times, I get real bored, or I just get really sad because I think about my past."

Like many with his disorder and severe mood swings, he finds it difficult to make and keep friends, so he spends a lot of time playing computer games, and he and mom enjoy going to movies.

A single parent working full time on the night shift at a hospital and going to school as well, Smith was living with her parents but now has her own apartment. Tyler has been making progress recently, moving from a special-education classroom to a regular fifth-grade class at Oak Grove Elementary School. He's getting good grades and loves math. It helps that his father, Paul Koberstein, is doing more with him lately. The boy's face brightens as they meet one afternoon at a fast-food restaurant.

The severity of it all
The National Institute of Mental Health reports that, overall, disorders such as bipolar appear to be more severe in children and adolescents than adults.

The recognition of childhood disorders took some time.

"Twenty or 30 years ago, psychiatrists and other physicians believed that childhood was a happy time," says Thomas Anders, president of the American Academy of Child & Adolescent Psychiatry and a professor at the University of California at Davis. "We had a belief that psychiatric disorders didn't begin until a child reached puberty or after. That wasn't based on science. It was based on the philosophical sense that children are always happy."

When troubled children acted out or were unmanageable, they were simply labeled "bad kids." Or the blame fell on bad parenting. That misperception was changed by science, controlled clinical trials and epidemiological studies with children. "We began to see that these disorders — anxiety disorders, depression, bipolar disorder, obsessive compulsive disorder — were present in younger and younger children. Research changed practice," Anders says.

Tristan's story
Wendy Glover-Strom received the kind of call parents of children with mental disorders dread— it was from the school psychologist telling her to "come quickly, your son is threatening to stab himself with a knife."

By late afternoon that day in early March, Tristan is in Southwest Mental Health Center. By 8:30, after intake processing, psychiatric evaluation and a wrenching, emotional parting with his mother, he is admitted into a locked unit, where he is watched and checked every 15 minutes, for 24 hours.

"You have to take these suicide threats seriously," explains Juan Zavala, the psychiatry fellow on call. "That's because he's not in control of his impulses. The impulsivity with bipolar disorder can be overwhelming."

Tristan, who turns 9 this week, was acting out aggressively at 4 and 5. By the time his bipolar disorder was diagnosed at age 7, he was suicidal with a plan to get a gun from a relative's home and put a bullet in his stomach. He hears voices telling him whom he should kill and, at various times, has threatened to kill his mother, his little sister and stepfather. In the throes of mania, he kicks, punches, bites and tears things apart.

Still, "I'm not afraid of him," Glover-Strom says. "When he's rapid cycling, he's like a demon. I hate to say that word because they don't understand why they're doing what they're doing. When he's not rapid cycling, he's a very loving child."

When the boy is totally out of control, mom restrains him with hug holds for periods lasting from minutes to hours. "Ten or 12 restraints a month, that's mild," she says. After violent outbursts, Tristan goes into a depressive state and says he's sorry.

Along with bipolar, he has ODD and ADHD. He suffers from paranoia and says people hate him. When he's stable, he's bright and chatty, but like Tyler and many other children with mental disorders, he has trouble making friends.

The family lives in Castroville, and Tristan is in third grade in a behavioral class at LaCoste Elementary School in the Medina Valley district. He's reading considerably above the grade level.

After hospitalization for a difficult two weeks in which Tristan's medication had to be readjusted several times because of side effects, the boy finally went home. But for Glover-Strom, who works at the Center for Health Care Services, the public mental-health provider in Bexar County, the stress of caring for her son is unrelenting. So is the anguish of seeing Tristan struggle with the illness.

"I asked him once what was going on inside him," she says. "He said, 'Mommy, there's a war raging in my brain, and there's a good general and a bad general, and the bad general is trying to wipe out all the good. I hate my life. I want to die.'"

Possible causes
It has been discussed but not proven that childhood disorders might be getting worse because of a genetic effect called "anticipation" in which certain genes are magnified down the generations. Each cohort of children born is more susceptible to earlier onset of mood disorders and to a more severe form of it.

Some psychiatrists believe these pediatric cases have always been there and better diagnostic tools and more awareness — despite the stigma of mental illness — are bringing more of them forward. But others also cite greater pressures on kids.

"I believe life has become more stressful for young, growing children. Kids are growing up in a much more stressed environment," Anders says. "These are multiple gene disorders and, like diabetes, not everyone with the gene gets diabetes. But if they have the genetic vulnerability to become depressed or anxious or obsessive compulsive, it will express itself in the kind of social pressure cooker we are putting our children in."

These children desperately need treatment, and without it, they can wind up in the juvenile justice system, later adult prisons, or face a lifetime of failure in their personal and work lives. But treatment is fraught with unanswered questions. Fears about an increased risk of suicide led the Food and Drug Administration to issue black box warnings on all antidepressants, which in the absence of large-scale clinical trials in youngsters, are not approved for children. The exception is Prozac, which is FDA approved for children older than 8. Antidepressants are used "off label" by physicians, who look at clinical pediatric experience, extrapolate from adult data and adjust dosages. At this writing, the FDA also is looking at pediatric cardiovascular concerns with widely prescribed Ritalin.

University of Maryland researcher Julie Zito in 2000 found the use of psychotropic medications in children, 2 to 4, had jumped dramatically from 1990 to 1995, when some 150,000 preschoolers were on them. That increase and the dearth of studies on children have raised alarms about both short-term effects and possible long-term consequences for developing bodies.

About 2.3 million Americans have bipolar disorder, but with solid statistics on children lacking, it's not clear how many kids suffer the rapid cycling, sometimes from one hour to the next, of manic and depressive moods marked by irritability, aggression, grandiose beliefs and even thoughts of suicide. The Child and Adolescent Bipolar Foundation cites studies showing about one-third of the children and adolescents who suffer from depression have early onset bipolar without the mania.

The issue is more than academic because early identification and early treatment can ease the severity of manic and depressive episodes in the future. Researcher Joan Luby, an associate professor of child psychiatry at Washington University School of Medicine in St. Louis who has found bipolar disorder in preschoolers, says treatment for the very young doesn't necessarily mean medications. It can start with psychotherapy.

Bipolar disorder diagnosis in 8- or 9-year-olds remains controversial. Critics of psychiatric "labeling" of children and anti-psychiatry groups such as the Church of Scientology oppose the screening and diagnosis of the disorders in children. But even within psychiatry, there are reservations about the bipolar diagnosis, which some say has become almost trendy.

Claudio Cepeda, a child and adolescent psychiatrist at Southwest Mental Health Center, believes the diagnosis of bipolar disorder is being "abused." And child and adolescent psychiatrist Jon McClellan of the University of Washington at Seattle is also critical of the widespread diagnosis in children.

"There's no doubt that there's lots of kids that have trouble regulating their moods or behavior, and they might have explosive and angry outbursts," McClellan allows. "It just never was the case that we used to call that bipolar disorder. Simply by calling it the same name as the adult disorder doesn't mean that it's the same thing or that the same treatments may work or are indicated. I think it (the diagnosis) is being used so broadly now that it has lost a lot of its meaning."

Actually, medications for bipolar disorder do tend to help children with explosive behavior and anger, and McClellan, who heads the state hospital in Lakewood, Wash., says that leads some to think they've made the correct diagnosis.

The diagnosis may be controversial, but parents like Kim Smith have no doubt. "I've done a lot of research into this, and it all comes back to bipolar disorder."

When you ask her what's the hardest thing about Tyler's illness, her eyes tear up. "He gets to the point where he says, 'I don't want to be like this anymore. I want to get better.' That's the hardest part. Watching him try to deal with it."