Childhood Manic-Depression_ US News & World Report

----- Original Message -----
From: "VERACARE" 

 
  ALLIANCE FOR HUMAN RESEARCH PROTECTION
   (AHRP)
  http://www.ahrp.org
  Contact: Vera Hassner Sharav
  212-595-8974
  e-mail: veracare@ahrp.org
 
  Would appreciate feed back on dealing with this...   Vera
 
  "Now 9, Alex has been diagnosed at various times as having autism,
  attention deficit disorder, bipolar disorder, and oppositional defiant
  disorder... Alex is ill. It's that simple. And the illness is as medical as
  diabetes."  

 
  "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."
 
 http://www.usnews.com/usnews/issue/021111/health/11kids.htm
  US NEWS & WORLD REPORT 11/11/02
  The Demons of Childhood
  Young brains break. Then comes the broken care system
 
  BY MARIANNE SZEGEDY-MASZAK
 
  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, diag- nostic schemes," says James
  Scully, the chair of the department of neuro- psychiatry 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---