Clinical Gaze is Torture
If "it" happened to any other group of people
(black, hispanic, elderly, jewish, etc.) there would be a huge national outcry.
If "it" happened in any other country, the US
would react vigorously in protest and issue sanctions immediately at the human
rights abuse.
If "it" were any other product, everyone would
be up in arms. The product would be banned, there would be government
restrictions and law suits galore.
"It" is a credible study that shows that people
who use public mental illness services (the product) are dying at age 52 (and
it's getting younger) while the general population is living to age 78 (and
it's getting older).
It is the clinical gaze that sees the above information
and does nothing because it's just "mental patients." It is torture
to know that our peers are losing 1/3 of their lives by placing their faith in
an uncaring system. It is torture to watch the uncaring system ignore our
plight because we're just "mental patients." It is torture to watch
police taser us because we're viewed as less than fully human. It is torture to
be placed in isolation and bondage (seclusion and restraints) because we're
viewed as less than fully human. It is torture to have the system drug us into
submission because we're viewed as less than fully human. It is torture to have
BigPharma sit in Board rooms and talk about "acceptable losses"
because we're viewed as less than fully human. It is torture to see us denied
"normal" jobs and housing and other basics because we're viewed as
less than fully human.
And the beat goes on...
Pat Risser 11/8/10
A series of recent studies consistently show that persons
with serious mental illnesses in the public mental health system die sooner
than other Americans, with an average age of death of 52.
(Colton, C.W., Manderscheid, R.W. (2006) Congruencies in
Increased Mortality Rates, Years of Potential Life Lost, and Causes of Death
Among Public Mental Health Clients in Eight States. Preventing Chronic Disease. Vol. 3(2).)
"Adults
with serious mental illness treated in public systems die about 25 years
earlier than Americans overall, a gap that's widened since the early '90s when
major mental disorders cut life spans by 10 to 15 years."
Report
from NASMHPD (National Association of State Mental Health Program Directors),
May 7, 2007
The
World Health Organization (WHO) found that recovery from schizophrenia is at
least 50% higher in emerging (third-world) countries that practice far less
Western medicineΉ and there are almost no psychiatric services.
Two
studies by the World Health Organization (WHO), one in 1979 and the second in
1992, compared the recovery rate, mostly from schizophrenia, in developing
countries with the recovery rate in industrialized countries. In 1979, WHO had
about 1800 cases validated by Western diagnostic criteria in developing
counties matched with controls from industrialized countries, and they found
that the recovery rate was roughly twice as high in the developing
countries compared with the industrialized.[1] They were so surprised by this
that they said, "Well, this must be a big mistake." So they repeated
the study in 1992, and they got the same results.[2]
[1]
World Health Organization. Schizophrenia: WHO study shows that patients fare
better in developing countries. WHO Chron. 1979;33:428.
[2]
Jablensky A, Sartorius N, Ernberg G, et al. Schizophrenia: manifestations,
incidence and course in different cultures. A World Health Organization
ten-country study. Psychol Med Monogr Suppl. 1992;20:1-97.
³What
does it mean that the life expectancy of persons with serious mental illness in
the United States is now shortening, in the context of longer life expectancy
among others in our society? It is
evidence of the gravest form of disparity and discrimination.²
--Kenneth J.
Gill, Ph.D., CPRP
Isn't it
obvious that pharmaceuticals don't work?
If
pharmaceuticals really worked to make people healthy, then the half of America
currently taking pharmaceuticals would be the healthiest half, and the people
who don't take pharmaceuticals would be unhealthy, right?
But in fact
it's the other way around: People who take pharmaceuticals remain unhealthy and
really never get cured of anything. Meanwhile, those who avoid taking
pharmaceuticals are, by and large, far healthier individuals.
http://www.usatoday.com/news/health/2007-05-03-mental-illness_N.htm#discov
Mentally
ill die 25 years earlier, on average

AP
2003 file photo
In
2003, the FDA added warnings for Zyprexa, shown here at an Indianapolis
packaging facility, and other anti-psychotic drugs because they can increase
the risk of diabetes and weight gain.
By Marilyn
Elias, USA TODAY
Adults with
serious mental illness treated in public systems die about 25 years earlier
than Americans overall, a gap that's widened since the early '90s when major
mental disorders cut life spans by 10 to 15 years, according to a report due
Monday.
"We're
going in the wrong direction and have to change course," says Joseph
Parks, director of psychiatric services for the Missouri Department of Mental
Health. He's lead author of the report from eight states — Maine,
Massachusetts, Rhode Island, Oklahoma, Missouri, Texas, Utah and Arizona
— that will be released at a meeting of state hospital directors in
Bethesda, Md.
About 60% of the
10.3 million people with serious mental illness get care in public facilities,
90% as outpatients, Parks says. They have illnesses such as schizophrenia,
bipolar disorder and major depression. Although the mentally ill have high
accident and suicide rates, about 3 out of 5 die from mostly preventable
diseases, he says.
Obesity is a
serious problem. These patients often get little exercise, and many take a
newer type of anti-psychotic, on the market for 18 years, that can cause
drastic weight gains, promoting diabetes and heart disease, Parks says. He
thinks these drugs are contributing to deaths from cardiovascular disease.
Recent studies
question the advantage of the newer drugs. "Many could be switched to
safer medicines," Parks says. Schizophrenics are thought to have a higher
risk for diabetes already, he says.
Mentally ill
adults also are more likely than others to have alcohol and drug-abuse
problems, and to smoke.
Because of their
mental disorder, patients often aren't good health advocates for themselves,
says Andrew Leuchter of the UCLA School of Medicine. When patients do seek
help, "I hear of great difficulty getting appointments even for simple
problems like high blood pressure. The public health system is underfunded,
and it's gotten worse over the years."
Medical needs of
the mentally ill are least likely to fall through the cracks when psychiatrists
and primary care doctors practice in the same facility, according to a 2003
report from the Bazelon Center for Mental Health Law. But integrated clinics
are "quite rare," says Bazelon policy director Chris Koyanagi.
Sometimes
internists disregard medical symptoms of the mentally ill, chalking them up to
the patient's disorder, says Kenneth Duckworth of the National Alliance on
Mental Illness. And needed treatment may be harder to get. He points to a study
showing that after the mentally ill suffer heart attacks, they're less likely
than other patients to get state-of-the-art care.
Parks thinks
agencies such as the Centers for Disease Control and Prevention should track
the health of adults with mental illness, just as they do other vulnerable
groups, to identify problems and solutions. "Many struggle for decades to
overcome mental illness," he says, "and after all that struggle, it's
particularly cruel to think that you would die young."
To report
corrections and clarifications, contact Reader Editor Brent Jones
ODDS
ARE NOT GOOD
People
with serious mental illness die at age 51, on average, compared with age 76 for
Americans overall. Their odds of dying from the following causes, compared with
the general population:
|
Cause |
Times more likely to die |
|
Heart disease |
3.4 |
|
Diabetes |
3.4 |
|
Accidents |
3.8 |
|
Respiratory ailments |
5 |
|
Pneumonia, influenza |
6.6 |
Source:
Joseph Parks, Missouri Department of Mental Health
DO
DRUGS HELP OR HARM?
New
antipsychotic drugs carry risks for children
http://www.usatoday.com/news/health/2006-05-01-atypical-drugs_x.htm
New
antipsychotic drugs carry risks for children
Updated
5/2/2006 10:09 AM ET

By
Eileen Blass, USA TODAY
Rex
Evans, left, a student at Watson Junior High in Colorado Springs, suffers from
involuntary jerking, which his parents believe was caused by atypical
anti-psychotic drugs.

Eileen
Blass, USA TODAY
Rex
and his mother, Kricket Evans, at the dinner table at home. Rex has a movement
disorder called tardive dyskinesia which causes him to grimace and make
involuntary movements.
By Marilyn
Elias, USA TODAY
Nancy Thomas
remembers the bad old days when she had to wear long-sleeve clothes to church
to cover bite marks all over her arms from her daughter Alexa's rages.
At age 8, Alexa
was diagnosed with bipolar disorder. She was a violent child with sharp mood
swings and meltdowns that drove her to tear up the house. Antidepressants and
drugs for attention-deficit disorder had only made Alexa more aggressive,
Thomas says.
A mix of
medicines including so-called atypical antipsychotics — drugs approved
only for adults — finally stabilized Alexa's moods. Now at 15, she is
able to live a more normal life — as long as she takes the medication.
Even so, the
Russellville, Mo., teen is paying a price: On one of the atypical
antipsychotics, Alexa gained about 100 pounds in a year, putting her at risk
for a host of health problems, including diabetes. It has taken her three years
to lose a third of that extra weight; she is still struggling with the rest.
Atypicals are a
new generation of antipsychotic drugs approved by the Food and Drug
Administration for adult schizophrenia and bipolar disorder (manic depression).
None of the six drugs — Clozaril, Risperdal, Zyprexa, Seroquel, Abilify
and Geodon — is approved for kids, but doctors can prescribe them as
"off-label" medications.
Psychiatrists
say the drugs can be helpful for children with serious mental illnesses and
have been known to save young lives. But diagnosis often is difficult, making
appropriate prescribing tricky. And many experts, including behavioral pediatrician
Lawrence Diller, author of Should I Medicate My Child?, say there is growing overuse of these
powerful antipsychotics.
Schizophrenia is
rare in children under 18: It strikes about 1 in 40,000, as opposed to 1 in 100
adults, according to the National Institute of Mental Health. Nobody knows
exactly how many kids have bipolar disorder; psychiatrists don't even agree on
criteria to diagnose the disease in childhood.
Research on how
the drugs affect children is sparse, and experts increasingly are concerned
that the drugs are being prescribed too often for children with behavior
problems, such as attention-deficit disorder and aggression.
John March,
chief of child and adolescent psychiatry at Duke University School of Medicine,
prescribes the drugs to kids in some cases of serious illness when he thinks
the benefits outweigh the risks. But he says prescribing them for behavior
problems alone may be a mistake. "We have no evidence about the safety of
these agents or their effectiveness in controlling aggression," he says.
"Why are we doing this?"
At the same
time, reports of deaths and dangerous side effects linked to the drugs are
mounting. A USA TODAY study of FDA data collected from 2000 to 2004 shows at
least 45 deaths of children in which an atypical antipsychotic was listed in
the FDA database as the "primary suspect." There also were 1,328
reports of bad side effects, some of them life-threatening.
Drug companies
are required to file any reports they have to the FDA, but consumers and doctors
report such events on a voluntary basis. Studies suggest the FDA's Adverse
Events Reporting System database captures only 1% to 10% of drug-induced side
effects and deaths, "maybe even less than 1%," says clinical
pharmacologist Alastair J.J. Wood, an associate dean at Vanderbilt Medical
School in Nashville. So the real number of cases is almost certainly much
higher.
"We're
conducting a very large experiment on our children," March says.
Side effects
that linger
Some parents
tell stories of serious effects that linger long after their kids stop taking
the drugs.
Rex Evans'
parents are bitter about what happened to their son. They believe the
13-year-old Colorado Springs boy was harmed permanently by an atypical
antipsychotic he took several years ago. Rex now has a serious case of tardive
dyskinesia (TD), suffering daily episodes of involuntary jerking movements and
facial grimacing, says Erin Evans, his mother.
Antipsychotics
are known to cause TD, but it's thought to be a rare effect for the newer
atypicals.
Despite such
reports, outpatient prescriptions for kids ages 2 to 18 leaped fivefold —
from just under half a million to about 2.5 million — from 1995 to 2002,
according to a new analysis of a federal survey by Vanderbilt Medical School
researchers. This doesn't include prescriptions at psychiatric hospitals or
residential treatment centers.
And even though
the drugs are approved only for adults, the rate of children treated with
atypicals "is growing dramatically faster than the rate for adults,"
says Robert Epstein, chief medical officer for Medco Health Solutions, pharmacy
benefit managers.
Medco did an
analysis of outpatient prescriptions for USA TODAY and found that, in a
sampling of about 2.5 million of Medco's 55 million members, the rate of
children 19 and under with at least one atypical prescription jumped 80% from
2001 to 2005 — from 3.6 per 1,000 to 6.5 per 1,000. And that only
represents kids who are privately insured, not those in foster care or others
on Medicaid.
"We know these
are very strong medicines," Epstein says. "You'd want to be
absolutely sure the child needs it."
The more
serious risks
Because of the
nature of the FDA data, they don't prove that these drugs caused the deaths or
the side effects. Many side effects for which an atypical is listed as the
"primary suspect" occurred in the normal course of using the drug,
but the database also includes cases involving drug abuse, overdoses, suicides
and homicides. Entries are sometimes cryptic, and the FDA enters verbatim
— misspellings and all — what's reported on the form.
Still, the data
"can be a useful signaling device" suggesting problems with a drug
that warrant conclusive studies, says Jerome Avorn, a pharmacology specialist
at Harvard Medical School and author of the book Powerful Medicines.
One-fourth of
the cases in the database studied by USA TODAY did not list the patient's age.
But in cases that listed an age under 18:
A condition
called dystonia was most often cited as an "adverse event" suffered
by someone taking one of the drugs, with 103 reports. Dystonia produces
involuntary, often painful muscle contractions.
Tremors,
weight gain and sedation often were cited, along with neurological effects such
as TD. Symptoms of TD can vary from slight twitching to full-blown jerking of
the body.
A condition
called neuroleptic malignant syndrome, with 41 pediatric cases over the five
years, was the most troubling effect listed, says child psychiatrist Joseph
Penn of Bradley Hospital and Brown University School of Medicine. It is
life-threatening and can kill within 24 hours of diagnosis. It's been linked to
drugs that act on the brain's dopamine receptors, which would include the
atypicals, Penn says.
The FDA office
of drug safety checks the database, "and we haven't been alerted to any
particular or unusual concern," says Thomas Laughren, director of the
agency's division of psychiatry products. "The effects (in kids) are
similar to what we're seeing in adults. We have not systematically looked at
the data for children" because the drugs aren't approved for them, he
says.
The 45 deaths
Among the 45
pediatric deaths in which atypicals were the primary suspect, at least six were
related to diabetes — atypicals carry warnings that the drugs may
increase the risk of high blood sugar and diabetes. Other causes of death
ranged from heart and pulmonary problems to suicide, choking and liver failure.
An 8-year-old
boy had cardiac arrest. A 15-year-old boy died of an overdose. A 13-year-old
girl experienced diabetic ketoacidosis, a deficiency of insulin.
More than half
of the kids who died were on at least one other psychiatric drug besides the
atypical antipsychotic, and many were taking drugs for other ailments.
The youngest, a
4-year-old boy whose symptoms suggested diabetes complications, was taking 10
other drugs.
The reports
don't tell the child's general state of health or other factors that could
predispose him to trouble. Also, neither Clozaril, which is rarely used, nor
Abilify, the newest atypical, was listed as a primary suspect in any deaths.
All the
drugmakers emphasize that their products are not approved for children, and
they say the drugs are safe and effective for adults with schizophrenia or
bipolar disorder who are monitored for side effects. Still, "there are
worrisome questions here," says Avorn. Large, longer-term database studies
could provide answers, he says.
There's some
evidence that the drugs can help young schizophrenics and may be helpful in
treating bipolar disorder in children, says Robert Findling, a child
psychiatrist at University Hospitals of Cleveland.
But the data
from controlled studies "are too few to guide treatment decisions" on
bipolar disorder, concluded Findling's research team in a summary of pediatric
studies published in the Journal of Clinical Psychiatry.
These
antipsychotics are the most widely used class of drugs to treat disruptive kids
who attack others and defy adults, Findling says. Again, there's a paucity of
proof that the drugs help.
There are only a
handful of carefully controlled, sizable studies testing the drugs for any
pediatric disorder, and they're mostly short-term, says Benedetto Vitiello,
chief of child and adolescent psychiatry at the national mental health
institute. The most serious, widespread problem found to be caused by the
medicines is weight gain, he says. The effect varies by drug, but kids
typically put on twice the pounds they should in their first six months on
atypicals.
In the first
three months on the drugs, children add about 2 to 3 inches to their
waistlines, says research psychiatrist Christoph Correll of Zucker Hillside
Hospital in Glen Oaks, N.Y. A lot of this is abdominal fat, which increases the
risk of diabetes and heart disease. Obese children are twice as likely as
normal-weight children to have diabetes, according to a new University of
Michigan study.
"Some
patients gain weight on Zyprexa and others do not," says Calvin Sumner, a
medical adviser to Eli Lilly Research Laboratories. Lilly makes the drug, which
has been associated with weight gains in adult studies. Sumner stresses that
Zyprexa isn't approved for kids.
There's no proof
atypicals cause diabetes, says Ramy Mahmoud of Janssen LP, maker of Risperdal.
He says the FDA added a label warning of increased diabetes risk "to make
people aware of the possibility."
One key question
about atypicals is whether they will have long-term, unknown effects on the
brains of children.
The brain system
that the drugs work on develops through childhood and adolescence, says Cynthia
Kuhn, a Duke University pharmacologist. "We really don't know the impact
of chronically perturbing that system in childhood."
Why atypicals
get prescribed
Given all the
potential problems, why would doctors prescribe these drugs to children to
begin with?
Nobody disputes
that the lives of schizophrenic or severely manic children may be saved by
antipsychotics. "I use them myself for patients," says March, the
Duke psychiatrist. "I have a 9-year-old who threatened to jump out of a
second-story window if her mom didn't give her the car keys to drive down to
the 7-Eleven to get a Coke. If I took her off antipsychotics, she'd
disintegrate."
But several
factors can lead to misprescribing of antipsychotics.
It can be
difficult to tell one behavioral disorder or illness from another in kids. For
example, the aggression and irritability of bipolar disorder can mimic
attention-deficit hyperactivity disorder or depression, the mental health
institute says. Also, the environment can be a key cause of symptoms that may
be mistakenly diagnosed as mental disorders, says Diller, the behavioral
pediatrician. Some events in a child's life can trigger acting-out or other
symptoms. Adults can explain what happened to them; children, especially the
youngest, may be more reticent.
Doctors often
face time pressures that prevent them from finding out what's going on in kids'
lives, knowledge that might suggest alternative treatments, Penn says. For
example, abuse of drugs such as methamphetamine, OxyContin and cocaine is
fairly common among teens, he says. Kids begin acting strangely, hearing
voices, becoming paranoid. The symptoms can mimic psychosis or behavioral
disorders, and doctors can end up giving these children unneeded antipsychotic
drugs, he says.
Insurance
coverage rules may encourage the soaring use of antipsychotics for children, as
well. "With some companies, the only thing they reimburse for is
prescribing. There's little or no therapy," says Ronald Brown, editor of
the Journal of Pediatric Psychology and a dean at Temple University.
Also, kids with
serious mental health problems often have at least one hospitalization, but
policies cover only a week or two.
It can take a
couple of weeks just to get medical records and family histories, Penn says,
but insurers often extend time if there's a new medicine started, which
encourages drug dabbling for children who are not ready to go home.
In the end, some
parents say their children have such severe behavior disorders or mental
illness that the benefits outweigh risks.
Parents of
children such as Alexa Thomas, who have bipolar disorder, say the atypicals
often help. "We were very fortunate," says Alexa's mother,
special-education director for the Russellville, Mo., school district.
"The medication worked for my daughter. It doesn't work for
everybody."
Misdiagnosis
common
The Vanderbilt
study of antipsychotic prescribing finds at least 13% of pediatric
prescriptions are for bipolar disorder. But there is some concern about
over-diagnosis and "jumping to this (bipolar) label too quickly,"
says psychiatrist Peter Jensen, head of the Center for the Advancement of
Children's Mental Health at Columbia University.
Sandra Spencer's
son, Stephen, was diagnosed as bipolar at age 6 and put on atypicals. He
developed liver abnormalities and obesity, his mother says. "He's been on
a smorgasbord of meds," she says. None worked well for very long.
By the time he
was in sixth grade, doctors said they weren't sure Stephen was bipolar after
all. Now 15, he is on low doses of an antidepressant and mood stabilizer. He's
being weaned off both, says Spencer, executive director of the Federation of
Families for Children's Mental Health, a support group.
She worries
about how the drugs have affected Stephen, who is black: As little psychiatric
drug research as there is on children, there's least of all on minority kids.
Some drugs are known to affect black adults differently from whites. "He
probably had ADHD all along," Spencer says. "Psychiatry is so not an exact science."
Child
psychiatrist Barbara Geller, a bipolar expert at Washington University in St.
Louis, agrees: "The science is nowhere near where it is in other branches
of medicine."
So parents
struggle to make the right decisions for very troubled kids. "There's a
lot of fear among parents," Spencer says. "You don't know what the
effects of these drugs are going to be. You're at the mercy of your doctor.
"I have had
to make a lot of decisions, and they were fear-driven. You don't have enough
information to make an intelligent decision."
Contributing:
Susan O'Brian
ABOUT
THIS REPORT
To
study the growing use of atypical anti-psychotic medications among children, as
well as the symptoms associated with their use, USA TODAY analyzed data from
several public and private sources.
For
information on illnesses and deaths potentially related to atypicals, USA TODAY
studied the Food and Drug Administration's Adverse Event Reporting System
database.
The
database collects mandatory reports from manufacturers and voluntary reports
from health professionals and consumers describing adverse drug reactions.
It
uses the information to look for potential safety problems worthy of
investigation. It includes information on the patient's age and gender,
medications, symptoms and outcome. The data cannot be used to prove that a
particular drug caused an adverse event, but the agency does label which drugs
were considered the "primary" or "secondary" suspects.
USA
TODAY's analysis focused on 1,373 cases received by the FDA from 2000 to 2004
in which one of the six atypical anti-psychotic drugs was coded as the primary
suspect. These cases were used to count symptoms, diagnoses and deaths.
To
learn about patterns in atypical use, USA TODAY asked Medco Health Solutions, a
prescription-drug benefit manufacturer, to query its member database.
The
company provided sample data on rates for atypical and non-atypical
anti-psychotic prescriptions and other topics.
Finally,
USA TODAY obtained data on pediatric atypical prescriptions from California and
Illinois under Freedom of Information requests.
Perspectives: One family's success
story
http://www.usatoday.com/news/health/2006-05-02-antipsychotic-success_x.htm
After
nightmarish years, new dawn for 16-year-old
Updated
5/2/2006 1:03 AM ET

By
Eileen Blass, USA TODAY
Camille
Houston, 16, works with her mother, Sheri Houston, during Sunday school at
their local Mormon church in Layton, Utah.
By Marilyn
Elias, USA TODAY
For Camille
Houston, atypical anti-psychotic drugs have been a lifeline.
Even at age 4,
Camille marched to an unusual drummer. She would shift abruptly from giddy
silliness to weeping for no apparent reason, says her mother, Sheri Houston.
Camille was
hyperactive. Preschool teachers complained about her argumentative behavior and
said she refused to stop doing things when told. On the plus side, "she
was a very, very bright child," her mother says.
The girl was
diagnosed with attention deficit hyperactivity disorder (ADHD) and depression
at age 4, so doctors prescribed stimulants and an antidepressant. But Camille
continued to struggle with mood swings and behavior problems.
When Camille was
6, a child psychiatrist diagnosed her with bipolar disorder. Doctors prescribed
Depakote, a drug used in treating bipolar illness, and the antidepressant
Prozac. Then she started to do terrifying, manic things. "She'd climb out
on the roof, and (she) began to have hallucinations," Houston says. The
girl was hospitalized at age 7 because she had become so manic that her parents
feared for her safety.
Camille is the
youngest of three children in a middle-income family in Layton, Utah.
"We're happily married, she was never abused, and we're religious,"
Houston says. "We just couldn't figure out how this could be happening."
In the hospital,
doctors gave Camille an atypical anti-psychotic drug, Risperdal. Her
hallucinations went away. But she gained weight so quickly on the drug that she
needed new clothes during the three-week stay in the hospital. Doctors took her
off the Risperdal and put her on Zyprexa, another atypical anti-psychotic.
Still, Camille
continued to fly into rages and to behave aggressively. After her brilliance in
early childhood, "Camille's IQ was dropping," Houston says, because
she couldn't function in school. At 11, she spun into a manic frenzy and again
had frightening hallucinations. She had to be hospitalized.
Camille received
a new diagnosis this time: schizoaffective disorder, a psychotic illness that
rarely strikes children. Doctors increased Camille's Zyprexa dose, and "it
worked wonderfully," Houston says. The hallucinations and manic behavior
stopped.
Doctors added
Abilify, another anti-psychotic, when Camille was 13, enabling them to curb the
dose of Zyprexa, which is linked to major weight gain in children. "But we
can't seem to get her off the Zyprexa without her becoming paranoid
again," Houston says.
Now Camille, 16,
takes an ADHD drug plus Depakote, the antidepressant Wellbutrin and the two
anti-psychotics.
For three years
she has been stable, though her IQ dropped 40 points from early childhood, her
mother says.
"But I
don't know that I would have done things differently," Houston says.
"I don't know that she would have survived without the medicine."
Camille is
making progress in her special-education classes, a private tutor is helping
her with schoolwork and she is flourishing as an artist.
She does bold,
abstract paintings in lime, hot pink and vivid blues. Classmates have asked her
to do pictures and have offered to pay for them.
"At one
time I felt like nobody cared about me," Camille says. "But I made
two friends in junior high, and friends have stuck by me."
Camille's goal
is to show her work in an art gallery or to be a fashion designer.
The medicine
"has helped me in a lot of ways," she says. "I'm more happy. ...
Sometimes I wake up and don't even remember that I have a disease."
Her feelings
about people have changed, too: "I used to care a lot about what people
think of me. They can call you fat or dumb or retarded or disabled. Now I just
don't care.
"I know who
I am."
Posted
5/2/2006 12:35 AM ET
HISTORY
OF ANTI-PSYCHOTICS
The
six atypical anti-psychotics Clozaril, Risperdal, Zyprexa, Seroquel, Abilify
and Geodon were touted as wonder drugs when they gained FDA approval for
treating adult schizophrenia and bipolar disorder from 1989 to 2002.
The
drugs were seen as a major advance over first-generation anti-psychotics, such
as Haldol, though they cost about 10 times as much (the drugs had about $10.5
billion in U.S. sales in 2005, according to IMS Health, a firm that tracks
prescription sales). Studies in adults suggested they were less likely to cause
tremors, painful muscle contractions and tardive dyskinesia, a potentially
disabling neurological disorder.
But
other serious problems surfaced. In 2003, the FDA ordered warning labels on all
atypicals, saying there was an increased risk of high blood sugar and diabetes.
In some cases, the blood sugar surges were associated with life-threatening
medical conditions or death, the agency warned.
FDA
added a "black box," the strongest safety warning, to the labels in
2005 because the drugs increased deaths in elderly patients with dementia.
Mom
feels betrayed by doctors, FDA
http://www.usatoday.com/news/health/2006-05-02-antipsychotic-side-effects_x.htm
Drug
therapy caused some scary side effects
Updated
5/2/2006 8:49 AM ET

By
Eileen Blass, USA TODAY
Rex
Evans, 13, reads in study hall at Watson Junior High School in Colorado
Springs. A voracious reader, it is rare to see him without a book. Rex has been
diagnosed with ADHD, obsessive compulsive disorder, schizoaffective disorder,
and autism, and has been on medications since age six.
By Marilyn
Elias, USA TODAY
Erin Evans is
one parent who wishes she had never heard of anti-psychotics.
As a military
couple, she and her husband, Joe, moved around frequently. Their son, Rex, 13,
was babied a lot. His mother now feels that he was not ready for school when he
reached kindergarten age.
He had trouble
focusing in the classroom and was diagnosed with attention-deficit disorder at
age 6. He started on an ADHD medicine and began hallucinating about worms and
bugs in his food.
Soon he was also
on Prozac for anxiety, but the nervousness and paranoia persisted.
At age 8, Rex
was given Risperdal by a Tennessee child psychiatrist in private practice who
consulted for the military. He said the boy probably had obsessive-compulsive
disorder, too, Evans says.
"(He)
didn't tell us it had never been approved for children or warn us about any
side effects," she says.
For the first
few weeks, Risperdal helped a little; Rex became less anxious and hyper.
"But then it wore right off, so the doctor kept increasing the dose,"
she says.
After one month
on Risperdal, Rex started having tremors; within a few months, his hands shook
so severely that he could barely write at school, "and I'd have to guide
the cup of milk to his mouth in the morning," Evans says.
But the
psychiatrist said the tremors weren't so bad, Evans says, and urged the family
to continue the drug.
The psychiatrist
didn't pressure them, she says, "but I'm from the generation where, when a
doctor says something, you believe it."
Then, about a
year after Rex started Risperdal, the Evanses found out that he might have
schizoaffective disorder, a psychotic illness that children rarely get. A
doctor's report said Rex probably would need to be institutionalized.
That year, when
Rex was 9, the family moved to Colorado Springs. The parents started to learn
more about Risperdal and, for the first time, they realized that Rex's symptoms
could be side effects, so they started to wean him off the drug. In a few weeks
they noticed his jaw was scrunching up and his facial expressions were becoming
distorted. By then, Evans says, she had read up on tardive dyskinesia (TD), a
neurological disorder that can be caused by anti-psychotics.
Rex became less
anxious, but the TD worsened. "He had a horrible, ugly look on his face
all the time," Evans says. Friends no longer came to play. Rex went from
winning an award for best reader in the third grade to claiming he couldn't
remember how to spell his own name in fourth grade.
Then in fifth
grade, Rex slowly began to improve. A medical exam showed spasms in his thorax,
perhaps linked to the upper body spasms, restricting the flow of oxygen to his
brain.
He began oxygen
therapy, and he quickly became more responsive to others and did better at
school, Evans says. He also had behavioral therapies. At the end of elementary
school, Rex had episodes only a few times a week.
But junior high
has brought more stress and bullying, and the episodes have become more
frequent. "His movement-disorder specialist said he expected Rex to have
this for the rest of his life," Evans says.
Now she is
bitter. "I trusted the doctors, I trusted the FDA ... and I feel betrayed
by both," she says.
The Food and
Drug Administration "does not regulate the practice of medicine,"
says Thomas Laughren, head of the division of psychiatry products. He adds that
he's concerned about the use of such drugs in kids without systematic safety
data.
Nobody knows how
many children on atypicals get TD, says Ramy Mahmoud of Janssen LP, maker of
Risperdal, but it's rare in adults. "Our drug isn't indicated for
children," he says. "It's a strong drug. It has risks and benefits.
Doctors and patients together have to weigh the benefits, at the start and on a
continuing basis, along with the harm and suffering."
Posted
5/2/2006 12:56 AM ET
Updated
5/2/2006 8:49 AM ET
Adult
antipsychotics can worsen troubles
http://www.usatoday.com/news/health/2006-05-01-adult-antipsychotics-kids_x.htm
Adult
antipsychotics can worsen troubles
Updated
5/2/2006 10:05 AM ET

By
Joel Salcido for USA TODAY
Evan
Kitchens, 10, suffered severe side effects as a small child before being weaned
off atypical anti-psychotic drugs.
By Marilyn
Elias, USA TODAY
Evan Kitchens, a
cheerful fourth-grader who loves basketball and idolizes his 16-year-old
brother, had been hospitalized for mental illness by the time he was 8.
The boy from
Bandera, Texas, was aggressive and hyperactive and had been diagnosed with a
variety of other ailments, including obsessive-compulsive disorder and an
autism spectrum disorder.
A couple of
years ago, Evan was taking five psychiatric drugs, says his mother, Mary
Kitchens. Two were so-called atypical antipsychotics, a group of relatively new
drugs approved by the Food and Drug Administration for treating adults with
schizophrenia or bipolar disorder.
"Evan was a
walking zombie on all those drugs," Kitchens says. At the harrowing nadir
two years ago, she wondered whether her son would survive, let alone live a
normal life.
Evan shook with
severe body tremors and hardly talked. He had crossed eyes, a dangerously low
white blood cell count and a thyroid disorder, all symptoms that emerged after
he started the atypical antipsychotic drugs, Kitchens says. Now, he has been
weaned from the drugs and takes medicine only for attention-deficit disorder,
she says. And he is mentally healthier than he has ever been.
These six new
antipsychotic drugs — Clozaril, Risperdal, Zyprexa, Seroquel, Abilify and
Geodon — are not approved for children, but doctors can prescribe them to
kids "off label." And prescribing atypical anti-psychotics for
aggressive children such as Evan is leading the field in a growing pediatric
business, according to a new analysis of a federal survey by Vanderbilt Medical
School researchers.
Outpatient
prescriptions for children ages 2 to 18 jumped about fivefold — from just
under half a million to about 2.5 million — from 1995 to 2002, the survey
shows.
At the same
time, reports of deaths and dangerous side effects potentially linked to the
drugs are increasing. A USA TODAY analysis of Food and Drug Administration data
shows at least 45 deaths of children from 2000 to 2004 where an atypical was
considered the "primary suspect." More than 1,300 cases reported bad
side effects, including some that can be life threatening, such as convulsions
and a low white blood cell count.
Non-drug
treatments
Treating
children's disruptive behavior with pills is a complicated issue and the
subject of debate among experts.
FOSTER
CHILDREN: Oversight of
prescriptions is scarce
"In my
experience, and that of many psychiatrists, antipsychotics are often overused
for aggression in young patients," says Ronald Pies, a clinical professor
at Tufts University and author of Handbook of Essential Psychopharmacology.
That doesn't
mean it's necessarily wrong to give the pills, he adds.
Nobody disputes
that the lives of schizophrenic or severely manic children might be saved by
antipsychotics. But many non-drug treatments can help to keep aggressive,
disruptive children off the atypicals, says John March, chief of child and
adolescent psychiatry at Duke University School of Medicine.
So much hinges
on whether safer treatments can work for a child.
Kids who show up
on antipsychotics for aggression often can be weaned off if there are family
changes, says behavioral pediatrician Lawrence Diller of Walnut Creek, Calif.
For instance, adolescents may lash out angrily if their parents are fighting or
discipline is inconsistent, Diller says. In a divorce, the child sometimes ends
up with the less effective parent.
Last year,
Diller saw an 8-year-old boy on four psychiatric drugs, including an atypical.
He lived with his mother, "a highly anxious, incompetent parent."
When he went to live with his father, his symptoms virtually disappeared, and
he didn't need any drugs, Diller says.
Child
psychiatrist George Stewart says he has seen dozens of aggressive children
weaned off the atypical antipsychotic drugs in his consulting work and as
medical director of a residential treatment facility in Concord, Calif. Too
often, he says, doctors give the drugs without considering family conditions or
life experiences that cause aggressive behavior, which can be changed with
intensive counseling. Three examples he offers:
A boy younger
than 3 was treated with two antipsychotics at a therapeutic preschool for kids
with severe behavior problems. Stewart got a full family history, discovering
his teen mother had a series of abusive boyfriends. "He was acting out due
to that, but nobody took the time to find out what was going on at home,"
says Stewart, who worked with the mom to improve conditions. "She settled down."
The child was
taken off atypicals and is doing fine.
A 12-year-old
boy with out-of-control rage — "we're talking smearing poop all over
the 'quiet room' " — was treated at Stewart's center. Intensive
therapy identified the sources of his rage and taught the boy how to cope. He
returned home, off all meds.
A teen girl
seemed to be intractably violent. "She was trying to stab pencils in
people's eyes," Stewart says. It turned out she had been raped and
experienced other severe trauma. She was weaned off antipsychotics and
counseled. Now in her late teens, she's living independently and doing well
with no psychiatric drugs.
One of the most
disturbing, potentially dangerous trends linked to atypicals is called
"polypharmacy": routinely giving kids several psychiatric drugs, says
child psychiatrist Joseph Penn of Bradley Hospital and Brown University School
of Medicine in Providence. "We know very little about the interaction of
these drugs, the effects they could be having on kids," he says.
The benefits of
prescribing multiple drugs may outweigh risks in some cases, but Penn says he
is appalled at how many times he has seen the mega-powerful atypicals
prescribed to children suffering from insomnia when they're taking other
medicines.
"I've seen
hundreds of cases," he says, "and often parents don't seem to have
been told about the many less risky prescription and non-prescription options
out there."
Sometimes
medical conditions or drugs for attention-deficit hyperactivity disorder cause
the insomnia. Rather than attacking causes, doctors add an atypical to the mix,
he says.
More research
needed
There has been
little carefully controlled, long-term research on children taking most
psychiatric drugs, including the atypical antipsychotics. The FDA is trying to
get more pediatric research on the atypicals, says Thomas Laughren, the
agency's director of the psychiatry products division.
The FDA has
asked five pharmaceutical companies that make the drugs to test them in
children with schizophrenia and bipolar disorder, the uses they're approved for
in adults. Under law, they can get a six-month extension on their patents for
doing these studies.
Also, the drug
companies are doing their own pediatric studies on children with disorders as
diverse as ADHD, autism, conduct disorder and Tourette's syndrome.
Janssen LP has
applied to the FDA for approval to use its atypical antipsychotic, Risperdal,
in the treatment of symptoms of autism, says Ramy Mahmoud, vice president of
medical affairs for Janssen.
The National
Institute of Mental Health also is conducting pediatric studies, but the
research is primarily funded and supervised by pharmaceutical companies.
Even if the
companies win approval, it won't guarantee safety or effectiveness of the drugs
in children, says David Graham of the FDA Office of Drug Safety, who emphasizes
he doesn't speak for the agency. "You basically know the drug isn't
cyanide. You don't know much else," says Graham, who was the
whistle-blower in the 2004 Vioxx heart disease scandal. Industry-funded trials
are four to five times more likely than independent studies to show
effectiveness for a drug, he says.
According to a
research review published in February, 90% of drug-company-funded studies come
up with findings that support the company's drug.
In head-to-head
research testing more than one atypical antipsychotic drug, the outcomes are
contradictory, coming down on the side of whichever company is paying for the
research. (The research included studies of Risperdal, Zyprexa, Clozaril and
Geodon, but none on Seroquel or Abilify.)
"It appears
that whichever company sponsors the trial produces the better antipsychotic
drug," writes lead author Stephan Heres of the Technical University of
Munich in the American Journal of Psychiatry.
And the
short-term, smaller studies required of companies rarely detect any but the
most glaring problems, Graham says.
"The
American public is operating under the illusion that a drug is safe just
because it's approved by the FDA," says Jeffrey Lieberman, chairman of
psychiatry at the Columbia College of Physicians and Surgeons in New York.
Studies lasting a few weeks to a few months, with a couple of thousand patients
total, won't reveal all that's wrong with a drug, he says.
Laughren agrees
that "it's very difficult to answer every question we'd like to answer
with these studies, because obviously they're not huge. Sometimes bad things
that happen are going to be discovered only when a drug is used more
widely."
He says he, too,
shares concern about the antipsychotics prescribed for children without proof
of safety or effectiveness. Much more pediatric information on the atypicals
will be available within five years, he says.
Recommended
changes
Others favor
fundamental changes to get the needed facts about drug safety. Lieberman thinks
one solution would be for the FDA to be given a new legal authority: the right
to require drug companies seeking to gain approval of a drug to contribute to a
collective pool at the National Institutes of Health. The NIH could supervise
larger safety and effectiveness studies of medicines after they're on the
market.
A national
electronic medical records database that would capture all bad side effects of
drugs, and require ages and diagnoses, could do a lot to protect children from
careless prescribing and reveal the effects of antipsychotics, Duke's March
says.
"We know so
little about what's happening to all the kids who are getting these powerful
antipsychotics," he says.
March also
thinks more private insurers ought to insist that aggressive children with
short fuses try non-drug therapies proven to help before doctors jump in with
antipsychotics. These pills can seem like an appealing "quick fix,"
he says, so they're popular.
For foster
children with mental health problems, medication is a mainstay, says Ira
Burnim, legal director at the Bazelon Center for Mental Health Law, an advocacy
group for those with mental disabilities. There's proof that the most effective
care is "wraparound," he says, meaning that caseworkers touch base
regularly with a child's school, doctor, foster and perhaps birth families, in
addition to ensuring therapy or medication as needed.
"Now
they're medicating many kids instead of giving them the services they need. But
there's very little time spent with psychiatrists and not much attention paid
to side effects from these heavy drugs," Burnim says.
States vary in
how much wraparound care they provide for foster kids, "but a typical
pattern is patches here and there," Burnim says. "They rely heavily
on medications like the antipsychotics. This costs more than wraparound in the
long run, and it's less safe for the kids."
March considers
the widespread use of antipsychotics on children without proof of safety or
effectiveness "a very large experiment." Many kids are getting the
short end of the stick, he says. "We're not even gathering good data on
the outcome of the experiment. It's the worst of all possible worlds."
ATYPICAL
ANTIPSYCHOTICS
The
six atypical antipsychotic drugs have varied side effects in children and
teenagers, research shows. Studies on how the drugs affect children are sparse,
with the fewest available on Geodon and Abilify, the two newest atypicals:
|
|
Clozaril |
Risperdal |
Zyprexa |
Seroquel |
Geodon |
Abilify |
|
Clinical name |
Clozapine |
Risperidone |
Olanzapine |
Quetiapine |
Ziprasidone |
Aripiprazole |
|
Date of FDA approval |
1989 |
1993 |
1996 |
1997 |
2001 |
2002 |
|
Manufacturer |
Novartis |
Janssen |
Eli Lilly and Co. |
AstraZeneca |
Pfizer |
Bristol-Myers Squibb and Otsuka |
|
Major symptoms reported |
||||||
|
Diabetes |
Severe |
Mild |
Severe |
Moderate |
Minimal |
Minimal |
|
Weight gain |
Severe |
Moderate |
Severe |
Moderate |
Mild |
Mild |
|
Sedation |
Severe |
Mild |
Moderate |
Moderate * |
Minimal |
Minimal |
|
Tardive dyskinesia |
None |
Minimal |
Minimal |
Minimal |
Minimal |
Minimal |
*
- More sedating at lower doses; Source: Christoph Correll, Child and Adolescent
Psychiatric Clinics of North America , January 2006
Contributing:
Susan O'Brian
Posted
5/1/2006 11:06 PM ET
Updated
5/2/2006 10:05 AM ET
BEHAVIORAL
OPTIONS ARE AVAILABLE
A
number of behavioral treatment programs may help keep children off
antipsychotic drugs. Among the options:
Webster-Stratton
program:
A five-month weekly program for parents and their severely defiant kids ages 3
to 8, it was developed by psychologist Carolyn Webster-Stratton more than 25
years ago. Children learn anger management, problem solving and social skills.
Parents learn how to reinforce and teach positive behaviors to kids and how to
reduce discipline problems by setting consequences for aggressive behavior.
Parents also learn to manage their own anger and depression and how to work
with teachers to set plans that encourage and reward positive behavior at
school.
Webster-Stratton
tracks graduates and says the method works for at least two-thirds of these
very disturbed children. It's available at her home base, the University of
Washington in Seattle, along with some areas of Delaware, Maine, California and
Colorado. Costs vary. For more information, e-mail her at cws@u.washington.edu.
Multi-systemic
therapy (MST): Developed by psychologist Scott Henggeler in the 1980s to treat
juvenile delinquents, it's now also being used for aggressive, impulsive kids
who aren't lawbreakers. It typically lasts four to six months and also involves
the child's family, school and friendship groups. This intensive treatment is
available in 32 states. Cost varies but averages $6,000. For information, visit
www
.MSTServices.com.
Parent
management training: This program teaches parents how to shape and control the behavior
of hostile or violent kids 2 to 14 years old. It's an hour a week for three
months, and kids 8 to 14 attend their own groups. Hundred of studies over three
decades show it works for most children, says Alan Kazdin, director of the Yale
Child Study Center, who developed the treatment. It's also available in Oregon,
Washington state and Florida. Costs vary. For more information, visit alan.kazdin@yale.edu.
Cognitive
behavioral therapy: Parents and children can participate in a week-long or a more
intensive several-week program at the University of Florida Medical School that
helps kids with obsessive-compulsive disorder. It's cognitive behavioral
therapy, a structured, goal-oriented treatment, says psychologist Eric Storch,
who developed the specialized program. Research supports its effectiveness, he
says. Cost averages $1,250 a week at Florida, varies by location. Other CBT
programs are available in many states. For information: www.ufocd .org or www.ocfoundation.org.
Floortime:
For
children with autism or defiance disorders, Bethesda, Md., child psychiatrist
Stanley Greenspan has created this program of intensive, structured
exercises that promote communication and problem solving, he says. It's
available in many states and described in Greenspan's new book, Engaging
Autism. Costs vary. For information, visit www.floortime.org.
For
foster kids, oversight of prescriptions is scarce
http://www.usatoday.com/news/health/2006-05-01-antipsychotics-foster-kids_x.htm
For
foster kids, oversight of prescriptions is scarce
Updated
5/2/2006 12:21 AM ET
Foster children
are of special concern to some experts who fear atypical anti-psychotics may be
prescribed without the careful oversight usually provided by birth parents.
The vigilant
medical monitoring that is needed by foster children on anti-psychotics
"is still unusual, unfortunately" in the USA, says Moira Szilagyi, a
Rochester, N.Y., pediatric endocrinologist who specializes in foster children.
There are no
numbers collected nationally, but Paul Vincent of the Child Welfare Policy and
Practice Group believes there has been an upswing in the use of atypicals by
foster kids in the past few years. His Montgomery, Ala., firm consults for
state child welfare agencies, reviewing many of their health services.
Some state data
obtained by USA TODAY through Freedom of Information Act requests appear to
support his observations.
In California,
Med-Cal prescription claims for atypicals for kids in foster care increased 77%
between 2001 and 2005, to 70,879. The actual number is probably higher because
the state does not get complete data from managed-care providers, which cover
the majority of foster children.
In Illinois,
the number of children covered under the state's public health care program
— not just foster children — who had an atypical prescription went
up 39% between fiscal years 2003 and 2005, to 17,746.
Kids as young as
4 are getting prescriptions for anti-psychotics, Vincent says, sometimes from
unqualified counselors. "They aren't psychiatrists or even psychologists.
I have considerable worry about the accuracy of these diagnoses."
The safety of
these drugs is of most concern to Andrea Moore, a Coral Springs, Fla.,
attorney. Judges appointed her to represent foster kids a few years ago.
Several children she represented started lactating after taking
anti-psychotics, a recognized side effect of the drugs. A 12-year-old girl with
a history of heart problems became short of breath on Geodon, an atypical that
can cause arrhythmias. "The doctor prescribing it did not even have her
medical history," Moore says.
Geodon has a
proven "modest" effect on heart rhythms in adults, says Ilise
Lombardo, medical director for the U.S. Geodon team at Pfizer Inc., maker of the
drug. The clinical impact of this rhythm change is unknown but is being studied
in adults, she says; safety and effectiveness studies in kids are underway,
too. The drug's label says patients with certain heart problems shouldn't take
it.
In February, Florida's
health care agency ordered an independent investigation into why the number of
Medicaid children taking anti-psychotics nearly doubled in the past five years.
The numbers jumped from 9,500 to 17,900.
A new Florida
law adds some protections for foster children, but it has loopholes, Moore
says. "I'm still hearing about problems with overprescribing and
under-monitoring."
Posted
5/1/2006 11:09 PM ET
Updated
5/2/2006 12:21 AM ET
A
rush to overprescribe?
http://www.usatoday.com/news/health/2006-05-01-kids-overprescribe_x.htm
A
rush to overprescribe?
Updated
5/2/2006 12:19 AM ET

By
Joel Salcido for USA TODAY
Evan
Kitchens, right, plays with Horlando De Paz and best friend Brennan Aguirre,
both 10, during lunchtime at Alkek Elementary in Bandera, Texas.
Rising
numbers of U.S. children are taking a new generation of anti-psychotic drugs
called atypicals.
Although the
six drugs — Clozaril, Risperdal, Zyprexa, Seroquel, Abilify and Geodon
— can be helpful in treating children with mental illness, critics say
that the drugs are overprescribed and that many kids suffer serious side
effects from drugs they never needed.
USA TODAY's Marilyn
Elias talks to
one mother who believes that's what happened to her son.
Evan Kitchens
had problems from birth. He suffered from lack of oxygen during a difficult
delivery. As a baby, he wouldn't nurse properly, didn't want to be held and
screamed for hours.
"He hardly
slept at all," says his mother, Mary Kitchens, a florist in Bandera,
Texas.
At 18 months old,
Evan was diagnosed with an autism spectrum disorder and prescribed Adderall, a
drug to treat attention-deficit hyperactivity disorder.
But Evan just
got more aggressive and hyperactive. When he was 2, he knocked out the front
teeth of his younger brother with a flashlight. The family began a constant
round of appointments with child psychiatrists and other doctors.
At 212, Evan
was diagnosed with obsessive-compulsive disorder. When he was 3, doctors put
him on Risperdal, his first anti-psychotic. But in a "special needs"
preschool, his aggressive behavior continued. He was out of control, racing out
of the classroom, hitting other kids.
At 5 Evan was
hospitalized for the first time. He was still on Risperdal and two other drugs,
supposedly to stabilize his moods and curb hyperactivity. But nothing had
worked well for long.
Kitchens says
she tried doctor after doctor. She had insurance only on and off; her husband
disappeared when twins were born 16 months after Evan, she says, so she became
the family's sole support.
"Every drug
created new symptoms, and then you had to treat those symptoms," she says.
"We were constantly changing meds. I see now what we were really managing
was symptoms of the drugs, not his underlying problem."
In April 2004,
at age 8, Evan set fire to the bedroom carpet with a candle. Fortunately,
14-year-old Ethan, Evan's older brother, saw the fire before anyone was hurt.
Evan was
hospitalized in San Antonio. The family drove three hours every day, Kitchens
says, to bring Evan dinner and spend time with him. Now doctors said he might
have bipolar disorder.
Evan had been on
Risperdal and the mood stabilizer Lithium. Doctors added Seroquel to the mix.
Within a month, he showed tremors, Kitchens says. "They got so bad, he was
shaking all the time." Evan's eyes started to cross. Still, doctors
thought it was important to keep him on the drugs. They added two more mood
stabilizers. Soon Evan had a thyroid disorder and an abnormally low white blood
cell count, Kitchens says.
In August, Evan
was transferred to another center and weaned off everything but Seroquel and a
drug for attention-deficit disorder. His alertness returned, but other symptoms
lingered for months.
In January 2005,
Evan came home. Kitchens gradually took him off Seroquel and says he's doing
better than ever just taking medicine for ADD. He has had intensive
behavior-management therapy; so has the whole family. His alarming symptoms are
gone, but his eyes still cross occasionally if he's tired.
Many child
psychiatrists are frustrated by the lack of drugs to treat kids with mental
disorders, says Wayne Macfadden, U.S. medical director for Seroquel, which is
made by AstraZeneca. But Seroquel isn't approved for children, he says.
"Obviously, prescribers have to weigh the risks and benefits."
Evan made the
honor roll in regular school his first semester home, Kitchens says. He sang in
the school's Christmas choir, played basketball and is making friends.
His mother
wishes she had gone the non-drug route earlier. "I didn't even know what
was available ... I totally relied on the doctors."
Evan says his
time of live-in care "is like a blur. I remember my stomach would hurt,
and my head would hurt. I slept a whole lot. And then I started to see two of
things. I was very scared." He says he's happy to be home: "Nothing
hurts anymore."
If doctors
recommend the drugs he took for other kids, Evan has some advice for their
parents: "Sometimes it's good for them, sometimes it's bad for them. I
would warn them about the bad things that can happen."
Posted
5/1/2006 9:55 PM ET
Updated
5/2/2006 12:19 AM ET
HOW
TO BE AN ADVOCATE FOR A CHILD
If
a doctor recommends antipsychotic drugs for a child, parents should ask some
key questions and watch for "red flags" that might signal the
need for another opinion, says David Fassler, a child psychiatrist and
clinical professor at the University of Vermont.
"If
you have any questions or concerns, you should always try to get a second
opinion," he says. "Sometimes the chemistry just doesn't feel right
with that doctor. Nobody has all the answers, and parents really need to be
advocates for their children."
Questions
to ask
Why do you advise this medication? Have you treated others with it? Was it
helpful?
How will we know whether the medicine is helping? "Push for specific
criteria," says Fassler. "Are we measuring frequency of
tantrums, school attendance or what?"
How long should it take to work? How long would my child need to be on this
medicine if it is working?
What are the common and uncommon side effects?
What are the alternatives to this treatment? What are the risks and
benefits of each?
Where can I get more information on the drug and on other treatment
options?
Is this the lowest dose that might be effective?
How will this medication interact with other drugs my child is taking?
How can I contact you quickly if I have concerns?
What will we do if it doesn't help? What is the next step?
Red
flags
The doctor hasn't done a full evaluation before prescribing the drug,
including reviews of the child's developmental, medical and psychiatric
history; family medical and psychiatric history; and the child's behavior
at school, with friends and family.
The doctor has no plan for regular follow-up.
The doctor doesn't discuss any other options, such as counseling, to accompany
the medication, or instead of it.
Helpful
websites
www.nimh.nih.gov
www.ffcmh.org
www.bpkids.org
www.aacap.org/
www.firstsigns.org
Opinion: An outraged journalist
and father discovers the mental health system is in 'shambles'
http://www.usatoday.com/news/opinion/editorials/2006-05-01-mental-illness_x.htm
Living
with mental illness
Posted
5/1/2006 9:28 PM ET
By Pete
Earley
"Dad, how
would you feel if someone you loved killed himself?"
My college-age
son, Mike, has stopped taking medication for the mental illness that was
diagnosed a year ago, and he is having a relapse. He and I are speeding to an
emergency room. Hang on son, I think. The doctors will help you.
But after
waiting four hours, a doctor appears and tells me it's illegal to treat Mike.
He is not sick enough. He is not in "imminent danger," and because
Mike now thinks "pills are poison," the doctor cannot forcibly
medicate him under Virginia law. I'm told to bring him back if he tries to kill
himself or someone else.
No parent should
watch what I see next. Mike sinks further into a mental abyss. Forty-eight
hours later, he breaks into a stranger's house to take a bubble bath. The
homeowners are away, but Mike is arrested and charged with two felonies. I've
been a journalist 30 years and thought I knew a lot about jails, courtrooms and
mental illness. But I was always on the outside looking in.
I was so
outraged about what happened to my son that I spent the next three years
investigating America's mental health system.
I went to
Florida, to separate myself from Mike's case, and spent time in the Miami-Dade
County jail. I followed psychotic prisoners through the courts, rode with cops,
interviewed judges, attorneys, psychiatrists, mental health advocates, parents
and persons like my son.
System in
disarray
I discovered our
system is in a shambles. Jails and prisons have become our new asylums.
Deinstitutionalization
— the haphazard closing of state mental hospitals and dumping of patients
into the streets during the '70s and '80s — began the migration from
hospital wards to jail cells.
In 1955, about
559,000 Americans were patients in state hospitals. If you took the
patient-per-capita ratio then and extrapolated it out to today, you'd expect to
find 930,000 patients in those facilities. But there are fewer than 60,000.
Where are the
others? About 300,000 are in jails and prisons. An additional 500,000 are on
probation. According to the Department of Justice, 16% of inmates in state
correctional facilities say they have a mental condition or have spent a night
in treatment. The largest public mental facility in the USA is the Los Angeles
County jail.
Lawsuits filed
to protect patients from abuse in horrific state hospitals created legal
barriers that are now preventing parents and other loved ones from intervening
until it is too late, just as they did in Mike's case. A shameful lack of
community services, including treatment programs and housing, also are to
blame.
In Miami, I saw
homeless men with chronic schizophrenia arrested for trespassing, jailed,
released untreated and arrested again days later. They are stuck in a vicious
revolving door.
No one is
immune
Mental illnesses
are chemical imbalances that affect how nerve cells in the brain send and
receive messages. They can strike anyone. Nothing in our family's history
hinted that a debilitating disorder loomed ahead. And Mike did nothing to bring
this sickness on himself.
Sadly, we are
making jails a core part of our mental health care network. Jail officials are
building separate facilities for psychotic prisoners. In effect, we are
reconstructing the dreaded "warehouse" asylums from our past inside
our jails.
Jails are not safe
places for a person with a mental illness, and the sick shouldn't have to
become criminals to get help. Most can get better. Treatment works in 80% of
cases — if it is available.
Incredibly, we
are continuing to shut down psychiatric wards in favor of jails. My state,
Virginia, has lost 84% of its psychiatric hospital beds since 1955. Why are we
choosing cells over beds? The cost of a psychiatric bed exceeds $500 per day.
The cost of a Virginia jail is $89 per day.
My son is back
on his medication. But now he faces the stigma of having a mental illness and a
criminal record. That's wrong. Few of us worry we'll wake up with a mental
illness. But what if the phone rings and it's someone telling you about your
sister, your daughter, your mother — your son?
I've been on the
inside looking out now. It is frightening.
Pete Earley's
book, Crazy: A Father's
Search Through America's Mental Health Madness, was published this month.
Posted
5/1/2006 9:28 PM ET