The Demons of Childhood
Young brains break. Then comes the broken care system
When Alex McAbee turned 7, many of the happy accomplishments of childhood were missing from his short, tortured life. Indeed, he had not even learned to read, nor had he doffed a corny cap and gown to graduate from kindergarten. Instead, his milestones included several expulsions from day care, one after he had given a child a concussion. Then there was that dreadful day he poked out the eye of his grandmother's puppy, and the day he chased his younger brother, Hudson, around the house with a butcher knife. Drinking gasoline, rubbing his feces on the walls--the list goes on.
Then there were the routine travails, more than the family cares to count, when he would shriek and hurl his dinner against the wall simply because his hamburger was located in the wrong position on the plate. Or when he would just sit and scratch his face and gnaw on his own arm. His mother, Kelly Troyer, recognized that Alex desperately needed help, but she discovered that finding psychiatric care for children in Greenville, S.C., was not so easy. "I was at my wits' end," she recalls. "I went through hell trying to get him treatment."
That road through hell is a familiar one for parents of children with emotional disorders. It begins at home and runs through the schools and into the offices of pediatricians, psychiatrists, psychologists, cardiologists, child neurologists, behavioral pediatricians, and social workers. All of these specialists could tell that there was something seriously wrong with Alex, but the problem was figuring out exactly what. Now 9, Alex has been diagnosed at various times as having autism, attention deficit disorder, bipolar disorder, and oppositional defiant disorder. Each diagnosis, of course, required different medicines. Many failed, and some actually exacerbated the problem.
It is impossible to say just how often this kind of story is repeated in homes across the country. But with an estimated 20 percent of all U.S. children and adolescents having a diagnosable psychiatric disorder, and 13 percent of all adolescents experiencing "serious emotional disturbance," one can imagine that it is repeated in most communities every day. Indeed, the surgeon general's National Action Agenda in 2000 detailed a "public crisis in children's mental healthcare." Compounding the problem is the fact that today's children "are sicker, younger," says Richard Sarles, professor of child psychiatry at the University of Maryland and the president-elect of the American Academy of Child and Adolescent Psychiatry. Why? No one knows for certain.
Certainly, budget cuts haven't helped. Hospital beds for children in psychiatric crisis are decreasing, and in most communities, long-term care is virtually nonexistent. Richard Harding, former president of the American Psychiatric Association and a child psychiatrist in Columbia, S.C., calls the national problem a "perfect storm, where budgets are cut, and inpatient facilities are closing, and more children than ever need help."
But Kelly Troyer and her family were unaware of this in 1993 when Alex was born. All she knew after several months was that her sleepless, agitated second son wasn't acting right. And what she knows several years later is that the system that should have been there to help wasn't acting right either.
KELLY TROYER SITS IN HER VAN IN the pickup line at the Pelham Road Elementary School, where Alex attends a special class with six other emotionally ill children. While he still clearly struggles--small setbacks can leave him tearful and frustrated--this has been a good year for Alex. After his diagnosis was finally nailed down, Alex began medication that has stabilized his symptoms. Both he and his younger brother, Hudson, are among an estimated 1 million children with bipolar disorder. Hudson, an impish, sparkling 7-year-old, is in a different school. The oldest brother, 12-year-old Brandon, is not only healthy but enrolled in a program for gifted and talented students.
Alex emerges, a typical little boy lugging a giant backpack. He is, as a report from the Medical University of South Carolina states, "well groomed and quiet with very soft speech," but he also has the slightly haunted look of a child whose brain has exacted a terrible price with its unpredictability.
"How are you doing, honey?" asks Troyer. "Did you have a good day at school?"
"I can read now," he announces proudly, as he searches for a book in his backpack.
"We never thought that would be possible," says Troyer as she drives away from the school. "Given everything else we had to deal with."
When Alex was a baby, he didn't sleep more than two hours a night and had problems eating and digesting food. When he was a year and a half, he began to hurt himself and other children at the day-care center, and he was kicked out. Troyer took him to the pediatrician, who "discounted everything I said." Alex, the doctor told her, was a normal kid, just colicky or in the midst of the terrible twos. All that was needed, suggested the pediatrician, was "different parenting skills." Troyer recalls: "I kept saying, you don't understand, this is a child who would rage and not sleep."
Unfair as this appears, and maddening as it is for parents, Troyer's difficulties also reveal the complexities of diagnosing severe mental illness in children, especially when it is manifest at a very early age. The conundrum with mental disorders is linking a clinical presentation--wild and frightening behavior, for example--with a diagnosis and suitable treatment. "We have improving, but not perfect, diagnostic schemes," says James Scully, the chair of the department of neuropsychiatry and behavioral science at the University of South Carolina School of Medicine. Diagnosis is based on observation and clinical experience rather than some measure of underlying physiology or cell pathology, and "there is a huge range of `normal.' We need to figure out if the child is experiencing a developmental process versus a developmental delay versus a real illness."
When Troyer's marriage broke up in 1997, she moved with her three sons into her parents' house in Greenville. Eventually, her mother and the boys' grandmother, Cindy Troyer, quit work as a nurse in order to help Troyer with the children, and Troyer's father, Tom, became a father figure to the boys, playing basketball, teaching them carpentry, and providing essential male ballast to their lives. Alex continued to be impossible to control, and Troyer thought she might finally get help from the family pediatrician in Greenville. The pediatrician recommended the popular antidepressant Prozac. Yet "it made him about 100 times worse," recalls Troyer.
Pediatricians and family practitioners prescribe over 85 percent of the psychiatric drugs today and, according to the surgeon general's report, two thirds of mental health visits are to primary-care physicians. "Clearly, half the patients I see have some kind of serious emotional problem," says pediatrician David Kaplan, chief of adolescent medicine at Children's Hospital in Denver. "Over the last five years I have been prescribing and managing more and more kids on psychotropic medication. It's a huge change in practice for us in adolescent medicine."
And not for the better. Kaplan and other pediatricians point out that the combination of more difficult cases and few available child psychiatrists leads them to dole out medicine they are neither trained in nor comfortable with prescribing. Some pediatricians, like Kaplan, who are affiliated with large hospitals or academic institutions, can consult with the child psychiatrist down the hall when confronted with a vexing case. But most don't have that luxury.
Before grim experience teaches them otherwise, desperate parents of mentally ill children assume that mental health services, like those for physical ailments, will proceed through some relatively predictable steps. The pediatrician refers you to a specialist, you get an appointment within a few weeks, the child is examined, medication is prescribed or a procedure is scheduled, and everything is reimbursed by insurance.
This model goes terribly wrong from the start. According to the American Academy of Child and Adolescent Psychiatry, there is a "crisis in the workforce." Only 6,300 child psychiatrists practice nationally, whereas, according to the Council on Graduate Medical Education, the nation needs more than 30,000 to serve those in need. Also, more than 20 percent of child and adolescent psychiatry residency programs were unfilled in 1999, and the number of child and adolescent psychiatry residents did not increase at all in the '90s. One problem is that to become a child psychiatrist, a young doctor must complete a three-year residency in adult psychiatry plus an additional two-year fellowship in child psychiatry. At the end of all that education, child psychiatrists typically end up on the bottom of the pay scale compared with other specialists.
The result is a massive maldistribution of services, with especially limited options for troubled children in rural or low-income areas. For example, there is less than 1 child psychiatrist per 100,000 young people in Mississippi, while there are nearly 20 per 100,000 in Massachusetts. Nebraska reported this year that it has barely enough mental health specialists to help children who are suicidal or in crisis.
Even if there is access to a mental health provider, there is the other problem of paying for the care. Although almost half of all children have some sort of private insurance coverage, the vast majority of those with psychiatric disorders are covered only by specialized "behavioral health carve-outs." What this means is that insurance companies have split off mental health care from primary care. Rather than a physician simply authorizing services, a "reviewer" or "gatekeeper" working for the insurance company determines what care will be reimbursed, in effect determining both the quality and the nature of the care. A recent Rand Health Program study showed that eliminating gatekeepers would most likely not raise costs for HMOs, but insurers have lobbied hard against equal treatment for mental disorders.
Many parents are stunned to learn that their insurance will not cover psychiatric medical care for what is clearly a seriously ill child. "If a child had cancer we would be infuriated if parents were made to beg for care," says child psychiatrist Harding. Kelly Troyer has what she calls "excellent private insurance" and secondary Medicaid as well. But even with that, Alex was refused treatment because the psychiatrist did not take Medicaid. When Troyer said that she had private insurance and would pay out of pocket, she was told that this, too, was impossible.
Care and reimbursement problems are further complicated because children who are mentally ill typically have a whole range of other needs. Alex also needed speech therapy and help with his learning disabilities and auditory processing problems. In a perfect world, a child psychiatrist would monitor both the medication and these other therapists, teachers, even the child's pediatrician.
A few communities are experimenting with ways to better coordinate all the services--what's called "continuum of care" or "wraparound" services. But in most places corollary services remain badly fragmented, and parents like Troyer are left to search on their own. When Alex became psychotic--"talking about blood and guts and gore"--Troyer had to turn to the Internet. Online she discovered Robert DeLong, a child neurologist at Duke University Medical Center. She E-mailed him, and magically he responded that he could squeeze Alex in for an appointment that week. She drove the four hours to Duke and finally got Alex the kind of care that had eluded him. DeLong took a detailed family history, evaluated Alex, and concluded that he had bipolar disorder. He then started him on new medications, including lithium and Depakote.
Even with this good fortune, Alex still had trouble getting continuity in his care. He at first seemed to get better, but a month later, on a Monday, the pediatrician gave him a blood test to see how he was tolerating the Depakote. The doctor was alarmed at the level of enzymes that can indicate liver damage, so he changed Alex's medication. Tuesday Alex began acting up at school, and by Wednesday he had tried to stab his teacher with a pencil. Alex and his mother and grandmother ended up at the Greenville Memorial Hospital emergency room.
Alex was completely out of control. In fact, Troyer had never seen him so violent. Finally, he was strapped down and dosed with Versed, a light anesthetic. It did nothing. Alex needed to be hospitalized, but there was no place in Greenville that had available beds, and the psychatrists whom the ER staff called did not answer. So he was taken by ambulance to Charter Hospital in Augusta, Ga., 21/2 hours away. He screamed the whole trip.
Many families end up in the emergency room when their child loses control. In most states, community services are so scarce that the system becomes clogged, creating a kind of gridlock of care. According to a 2001 report by the Baselon Center for Mental Health Law, children in crisis are brought to an emergency room where they remain until a bed opens up in the psych ward, but there are fewer and fewer such beds. Residential programs, which would be the natural next step, are often full because children cannot be discharged into communities that have no intensive services. It's a classic Catch-22, because children in the community don't get the care they need, and end up in crisis, in the ER--and the cycle goes on and on. "Over and over again I have patients who get shuttled from hospital to hospital to get even the most basic mental health services that they need," says Richard Barthel, a child psychiatrist at Children's Hospital of Wisconsin in Milwaukee. "The consequences on these children and their families are devastating."
Alex was treated at Charter for a week. At one point a social worker told Troyer that she needed to place him in a long-term-care facility. The strain of keeping him at home would destroy the family, Troyer was told. "When she told me that, it fueled the fire in me," says Troyer. "I was so determined that this was not going to happen, I said, `I don't care what needs to be done because we are not going to do that.' "
Even if she had wanted to institutionalize Alex, her options would have been limited. Across the country, long-term-care facilities for mentally ill children--and adults for that matter--have disappeared. State hospitals have closed, and most private long-term options are colossally expensive.
The talk of institutionalization frightened Troyer. She turned to DeLong and asked what the outcomes for children like Alex could be. DeLong, who has worked with bipolar disorder in children for over 30 years, acknowledged that in the end, each child is different. Some become Eagle Scouts, others commit suicide, others finally are forced to live in long-term facilities. Then he looked her straight in the eye and said, "Alex will be OK." It was all Troyer needed.
IT IS 5:45 IN THE MORNING AND STILL dark when Alex gets ready to catch the 6:00 bus to his school. While the trip is less than half an hour by car, this bus is for disabled children throughout Greenville and stops at several different schools and neighborhoods. Alex is the first picked up and the last dropped off, so by the time he arrives he has been riding, and napping, for an hour and a half. His clothes are carefully laid out on the chair in the order in which he needs to put them on. He dresses quickly and goes into the kitchen, where Troyer gives him his medicine.
Every day, twice a day, Alex takes the anticonvulsant Depakote to stabilize his mood; lithium to calm the excitability of bipolar disorder and ease his symptoms; Risperdal, which is a major tranquilizer and antipsychotic; and clonidine, an antidepressant. Risperdal alone costs $700 a month, and the others bring the total medication cost to nearly $1,500 a month. Including Hudson's medicine, the monthly bill for medication is several thousand dollars. "I tell people that if anyone broke into our house their best bet would be to go for the drugs," jokes Troyer. Alex responded well to the lithium. Hudson, however, was a different story.
Even Troyer didn't see a problem with Hudson early on. But after Alex chased Hudson around the house with a butcher knife, the happy 3-year-old was transformed into a withdrawn and moody child almost overnight. The family had no idea what had happened until several weeks later, when Alex admitted what he had done. In some cases such a trauma can trigger an underlying disorder that might never have appeared otherwise.
Hudson began to act out in school, urinating on his classmates. Troyer had been so accustomed to the profound dysfunction of Alex that she didn't realize Hudson was beginning the dramatic slide into bipolar disorder as well. "I would have all these thoughts going through my head really, really fast," says Hudson. "Then they would start buzzing like bees until it got louder and louder, so I couldn't stand it." At 51/2, Hudson was in the midst of pediatric mania. DeLong recalls that Hudson couldn't calm down when they first met, and his words came out garbled and giddy. He was not as neurologically damaged or developmentally delayed as his older brother, but it's likely they share genetic predisposition to the illness. Now Hudson, too, takes a small pile of pills with his morning and evening glass of milk. In the beginning one of them was lithium. It had worked so well with Alex, Hudson was likely to benefit too.
But one day, the school called and said Hudson was not well. He had dropped his pencil and seemed unable to hold it. By the time his grandmother Cindy appeared, he couldn't walk. He was having a rare but horrible reaction to the lithium and was nearly paralyzed by the time they got him to the emergency room, where he lay incapacitated for three days.
Alex and Hudson literally embody the profound complexity of prescribing some of these powerful drugs for developing young bodies and brains. While they are miracle drugs for many, for others they can produce horrible side effects. As DeLong says, "The medicine can turn these cases around pretty quickly; the challenge is to keep them turned around."
FOR NINE YEARS KELLY, TOM, AND Cindy Troyer have received a painful education in the field of children's mental health. With the two bipolar boys now in school, doing well, having difficult days but generally on the road to productive lives--Alex looks forward to "getting married and having my own kids"--the family now tries to help others by working with the Federation of Families of South Carolina. The first Tuesday evening of every month, they convene a parent group at the Allen Bennett Memorial Hospital in nearby Greer.
Fourteen parents are there this Tuesday evening. Couples sit together and hold hands; others are alone. Everyone looks exhausted as they talk about the dramas and tortures of living with children who have emotional disorders. One mother is applauded for finally qualifying for Medicaid. Another describes a harrowing night of violence with her daughter in which she finally was so fearful she called the police. Brushes with the law and encounters with the juvenile-justice system loom in many of their stories.
Alex and Hudson will most likely not end up in the juvenile-justice system, but they are the lucky ones. According to Karen Stern, a program manager in the Office of Juvenile Justice and Delinquency Prevention: "Prior to 1990, mental health problems weren't given much thought, or it was assumed to be a very small number of incarcerated kids. Since then there's been a growing recognition of the number. It's of great significance." According to a report submitted to Congress by the Coalition for Juvenile Justice, an estimated 50 percent to 75 percent of the 2.5 million youths under age 18 who are arrested suffer from mental health problems. It has often been said that the Los Angeles County Jail is the largest mental institution in the country; that phenomenon is also reflected in the juvenile-justice system.
IT IS THE END OF THE DAY. THE BOYS are back from school, the family therapist has come and gone, Alex and Hudson are playing outside with a neighbor's child, and Brandon is getting ready to go to a church function with friends. A stew simmers on the stove. Tom Troyer, 56, sits in an easy chair in the living room of the house he shares with his extended family. A tall man with the sturdy competence of his Hoosier upbringing, Troyer concedes he never gave mental illness a second thought until it afflicted his family. He has since become a passionate advocate for the mentally ill. "I remember that someone in our church once said that Alex was probably possessed by the Devil," he recalls. "Now don't get me wrong, I believe in demonic possession. But that is not what is wrong with Alex and Hudson. They are ill. It's that simple. And the illness is as medical as diabetes."
In the end, Troyer's simple statement encapsulates much of what has gone wrong in the care for children with a serious mental illness. His grandsons are representative of both the promise and the crisis in children's mental health. The old cliche that children are the future holds special resonance in these cases, but troubling questions linger: Which children and, more important, what kind of future?
Number of children per child psychiatrist
[Map is not available]
D.C. 2,949 Best
W.Va. 76,042 Worst
Source: American Medical Association
This story appears in the November 11, 2002 print edition of U.S. News & World Report.