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AUTISM FIRST STEPS
AUTISM DAILY NEWSLETTER
Tuesday January 8, 2002
INDEX:
* Family struggles with
autistic child
* Ousted MMR doctor is given new job in America
* MMR doctor links 170 cases of autism to vaccine
* He's a champion in spirit High school swimmer with autism has been
an
inspiration, say coach and fellow Quaker teammates.
* Prescription drug use varies widely between states for adults and
children
* California Offers Additional Newborn Screening Tests For Genetic
Birth
Defects Using Mass Spectrometry
* SPECIAL NEEDS TRUST AND GUARDIAN WORKSHOP
******************************
Family struggles with autistic child
Parents
forced to make tough choices when deciding on treatment
By SHIRLEY HUNTER MOORE
Chris and Christa Tickle knew things weren't going well with their son Pierson,
even though family members said he'd grow out of his odd behavior.The child had
never smiled at people or looked anyone in the eye. He didn't talk, and he
didn't play with toys the way most children do.Pierson, now 3 years old, was
diagnosed as being autistic last April. In an effort to do what is best for
their son, the couple have put their son on a special diet and are paying for
therapy many parents can't afford to treat their son."The stress is
absolutely overwhelming," Christa said in a recent interview. "But what
do you do? Do you go bankrupt? And do you do it for your child?"The
Tickles have depleted their bank accounts, sold one car and borrowed from
family members to pay for treatment. They face an uncertain financial future
and are planning to sell their home.
Early questions
Last winter, the Tickles were eagerly awaiting the birth of their third child.
They were living virtually debt-free, except for one car payment and a mortgage
on their home in Walden Ridge, a new subdivision in northwest Charlotte near
Huntersville.Chris, 26, was doing well as a computer analyst. Christa, 27,
stayed home and cared for the kids. But they worried about Pierson. He rarely
made eye contact and didn't react to others' voices or presence. "At 15
months, he hardly made any eye contact at all," Christa said. "We
would have to make loud noises (for him to look at the camera), and sometimes
he didn't pay attention to that. We thought he was deaf."When hearing
tests turned up nothing, the Tickles searched the Internet for other explanations.Christa
found information on autism, a complex developmental problem that impairs a
person's ability to understand information and communicate."As soon as I
read about autism, I thought, `this is what he has,'" she said.It explained
Pierson's behavior and his fixation with rolling and spinning toys or objects.
After months of seeing specialists, a Charlotte developmental psychologist gave
the Tickles a definitive diagnosis. A special diet and tutors
Symptoms of autism can vary in severity. Genetic factors often are involved and
the exact cause is unknown, according to the Web site for the Autism Society of
North Carolina, a nonprofit advocacy group. The condition is treatable, but
early diagnosis and intervention are key.The 1988 Dustin Hoffman movie
"Rain Man" briefly brought much of the nation's focus to the
condition, but his character was an autistic savant - a person who displays an
extraordinary ability - with extraordinary mathematical talents.Pierson hasn't
exhibited savant behavior, Christa says.The couple consulted other families in
a close network they've formed. Then, they put their son on a strict diet they
heard could help. He eats no grain-based or dairy products, which means regular
ice cream is out. So are bread, cookies and cakes, unless they are made from
rice products.The diet has helped some autistic children with digestive
problems, said David Laxton, a spokesman for the Autism Society. The Tickles
believe it has improved Pierson's behavior. They also believe in the intense therapy,
despite the cost. They've turned an upstairs bedroom into a classroom, where
they spend thousands of dollars for specially trained tutors who teach Pierson
things most kids know instinctively or pick up from others. The tutors are in
and out of the Tickle home constantly. The therapy can last hours."Our
house is basically open all the time," Chris said. "Every day
something is going on. We're really never relaxed, but when you see his
progress, it's all worth it."The tutors have taught Pierson to look at
people. They used positive reinforcement, such as candy or a favorite
toy.They've taught Pierson to point."They had to turn his finger out and
make him point," Christa said.And they've taught him to follow one- and
two-step directions.Now he interacts with his 3-year-old twin sister, Elora,
who is not autistic. He also plays with his 41/2-month-old brother, McKinley.
He also reacts to voices, says simple words and plays with toys he'd never
shown interest in. Paying the bills
All this has come with a price.Though Chris has taken outside computer
projects, the debt continues to mount.To pay those hefty tabs, which sometimes
reach about $3,000 a month, the couple have paid other bills late. They've sold
one car and plan to sell the other. They've also borrowed from family
members."Every day we typically have people calling, wanting us to fulfill
our financial obligations," Chris says.They've gotten a home-equity loan
to consolidate bills. One key problem is the treatment they've chosen isn't
covered by Chris' insurance.The couple have appealed benefit denials, but so
far nothing has changed. Under the policy, you can't exceed 20 therapy hours a
year. Autism is treated as a mental health issue, Chris says.He and his wife
are hoping legislation that state Rep. Martha Alexander, D-Mecklenburg, is
trying to get passed will allow people to receive the same coverage for mental
health and substance abuse as for medical illness. That proposed legislation is
still in subcommittee, Alexander said. "I haven't given up yet," she
said. "People need help."The cost of covering treatment like
Pierson's is an issue for insurance companies, says Laxton, who says it's not
unusual for some families to go to extraordinary measures. It's difficult to
decide what therapy is best, he says. He's quick to point out that no one has
ever been cured of autism, but "there are instances where children have
made marked improvement." And he says there are other services and
treatments that may not be as costly. Searching for options
The Tickles sought other options to pay for treatments. They've tried to get
Medicaid services, but the state budget problems have delayed that, Christa
said. The Charlotte-Mecklenburg school system doesn't pay for the therapy
Pierson receives, and her working isn't an option since she cares for the other
children. So, the couple have decided to sell their home and move to a smaller,
less-expensive one. Also, they recently sent a letter to family members, asking
for monthly contributions. Until now, her father was the main relative who had
pitched in. The latest request was a mass mailing of 120 letters."All I
know is, I don't want to live like this. We've had to buy groceries with a
credit card," Christa said recently as she sat in her living room holding
a letter in one hand and wiping tears with the other."My child's future is
at stake," Christa says. "I just can't put a price tag on that right
now."Chris and Christa Tickle see a little boy they believe will have a
better life if they can endure the tough times."His last evaluation, they
basically said this child has no symptoms of autism," Christa said.
"Our goal is for him to have a normal, functioning life."
http://www.charlotte.com/neighbors/meck/mcover0106.htm
******************************
Ousted MMR doctor is given new job in America
By Lorraine Fraser, Medical Correspondent
(Filed: 06/01/2002)
THE British doctor
forced out of his job because of his studies on the childhood MMR jab and
autism has been appointed head of a multi-million dollar research programme in
America.Dr Andrew Wakefield's departure last month from the Royal Free Hospital
in North London, revealed in The Telegraph, led to renewed furore over the
safety of the triple vaccine and precipitated intense
pressure on the Prime Minister to reveal whether he has allowed his baby
son, Leo, to have the innoculation.Dr Wakefield has identified
nearly 200 children with a new combination of bowel disease and autism who
became ill after being given the MMR jab, but was told by the Royal Free and
London University Medical School that his research was "no longer in
line" with its strategy.He will now continue his studies at the
International Child Development Resource Centre (ICDRC) in Florida.The centre
treats more than 1,700 children with autistic spectrum disorders from all over
the world and is to develop an additional £15 million research facility at Boca
Raton, South Florida.Dr Wakefield told The Telegraph last night: "The
autism world is in crisis with the number of children affected skyrocketing.
Not only does the medical establishment have no answers, it appears that it
doesn't want to ask the right questions. ICDRC breaks that mould. It holds
tremendous potential and it will be an honour for my team and I to help realise
that potential."The Director of ICDRC, Dr Jeff Bradstreet, said Dr
Wakefield's decision to join as Director of Research was wonderful news and
would complete a "world-class" research team of specialists with
expertise in all aspects of autism.The parents of autistic children helped by
Dr Wakefield while he was at the Royal Free will be devastated to learn that he
is to go abroad. He sought to reassure them last night, stressing that his aim
was to help autistic children everywhere by continuing his research.Robert
Sawyer, the Chief Executive of Visceral, a UK charity that supports bowel and
autism research, said Dr Wakefield would still collaborate with doctors in the
UK, Ireland and Sweden.He said: "This is an opportunity to bring the best
minds together and get the research done."Dr Wakefield is investigating
the possibility that the MMR vaccine, which combines live measles, mumps and
rubella viruses in one injection, may cause bowel problems in some children
which lead to autism.The Department of Health insists parents have no reason
for concern about the vaccine, which is recommended by the government for all
children.Officials have warned that a measles epidemic could result if parents
shun the vaccine. Mr Blair has refused
to disclose whether his 19-month-old son has had the MMR combined jab or
separate vaccines, but has said it is "offensive beyond belief" to
suggest he his wife, Cherie, are deliberately refraining from giving their
child the treatment while his government advises it.
http://portal.telegraph.co.uk/news/main.jhtml?xml=/news/2002/01/06/nmmr06.xml&sSheet=/news/2002/01/06/ixhome.html
******************************
MMR doctor links 170 cases of autism to vaccine
By Lorraine Fraser, Medical Correspondent
(Filed: 21/01/2001)
THE consultant who
first raised concerns about MMR vaccinations has disclosed to The Telegraph
that he has identified nearly 170 cases of a new syndrome of autism and bowel
disease in children who have had the triple-dose injection.Andrew Wakefield, a
consultant gastroenterologist at the Royal Free Hospital in London, said that
in the "majority" of cases parents had documentary evidence that
their child's physical and mental decline had followed the
vaccination.Professor Wakefield said: "Last week in our clinic we saw nine
or 10 new children with exactly the same story, referred by jobbing paediatricians
from around the country who said, 'This child developed normally, had a
reaction to MMR and is now autistic'".In his first public comments since
the row erupted in 1998, when he reported on 12 cases, Professor Wakefield said
that he remained seriously concerned by the safety of the vaccine, despite
reassurances from the Department of Health.He said: "The department says
that the safety of MMR has been proven. The argument is untenable. It cannot be
substantiated by the science. That is not only my opinion but increasingly the
view of healthcare professionals and the public.He said: "Tests have
revealed time and time again that we are dealing with a new phenomenon. The
Department of Health's contention that MMR has been proven to be safe by study
after study after study just doesn't hold up. Frankly, it is not an honest
appraisal of the science and it relegates the scientific issues to the bottom
of the barrel in favour of winning a propaganda war."The doctor, who was
fiercely attacked by health officials for voicing his doubts three years ago,
said in an exclusive interview that he felt driven to break his silence because
of the accumulating evidence. His remarks will infuriate the Government and
sharpen the dilemma of parents over whether to have children innoculated with
MMR.It emerged last month that a rising number of doctors and nurses were
worried about giving second doses of the vaccine, and pressure is growing for
its separation into its three component vaccinations, spread over three years.
In his 1998 article in The Lancet, Professor Wakefield reported finding a
devastating combination of bowel disease and autism in 12 children.His
revelation that that figure has reached almost 170 cases will shock parents and
doctors and add pressure on the Government to justify its vaccination policy.
This month Dr David Salisbury, the head of the Government's immunisation
programme, insisted that MMR was safe.The vaccine, which contains live measles,
mumps and rubella virus, has been given to millions of children in the UK since
its introduction in 1988 but the take-up rate has fallen sharply since Dr
Wakefield made his original claims.Ten days ago health chiefs warned parents
that Britain could face a measles outbreak unless more had their children
vaccinated with MMR. Professor Wakefield said, however, that if an outbreak
were to erupt it would be the fault of the health department, which had
"failed to address the safety issues".The doctor and his colleagues
are testing the hypothesis that the measles virus from the vaccine can lodge in
the gut of susceptible children, damaging the bowel and causing autism, and
that the addition of the mumps virus makes that more likely.
http://portal.telegraph.co.uk/news/main.jhtml;$sessionid$IRNUCVIAAANA5QFIQMGCFF4AVCBQUIV0?xml=/news/2001/01/21/nmmr21.xml
******************************
He's a champion in spirit High school swimmer
with autism has been an inspiration, say coach and fellow Quaker teammates.
By Jeff Riley
Indianapolis StarJanuary 05, 2002PLAINFIELD, Ind. --
Kyle Thate never will don a state championship medal.The Plainfield High School
senior won't even earn a Mid-State Conference medal, for that matter.
![]()
In fact, Thate has not yet earned a varsity letter or scored a
point for the Quakers, despite swimming three years in the boys program.But
that means nothing to Thate, his coaches or his teammates. Although Thate is
developmentally challenged by autism, he is just as much a part of the Quakers'
program as the team's standout swimmers.Forget the medals. To his teammates and
coaches, Thate is a champion of determination, enthusiasm and smiles."We
don't treat him any differently than any other person on the team," said
senior Drew Ward, who often provides Thate with transportation to
practice."You know, every time I come to pick him up, he's standing there
waiting. And when he sees you, he gets that big grin on his face and comes
running out the door."Thate's autism is a result of a neurological
disorder that affects the normal functioning of the brain. It is characterized
by the abnormal development of communication skills, social skills and reasoning.Thate,
however, seemingly is undaunted by his disability. He is actively involved in
his church and works part time at a local department store. This past
Christmas, he used his own money to provide gifts for a disadvantaged
child."Great is how I feel about that," he said. "I bought
clothes -- belt, underwear, sweater, pants."Then there is his swimming --
a true passion since infancy. He swims the 50- and 100-yard freestyle, plus the
freestyle leg of the 200 medley relay."It is my favorite sport, and it is
good exercise," said Thate. "I have good friends on the team, and I
like to be a role model."He has become a role model for underclassmen and
upperclassmen alike, as well as for coach Chris Cavanaugh."It has been a
great experience for me as a coach, and the same has been true for the other
guys on the team," said Cavanaugh. "We've all learned a lot from
being around him. He's just got a great heart, a pure heart. You don't see that
too many times in high school kids. Plus, he's been a lot of fun. He has a
great sense of humor, and he's very supportive of his teammates."Cavanaugh
is careful to offer no special treatment for Thate, who attends only one of the
team's two grueling, daily practices. Thate's mother, Lynn, is thankful that
Kyle is treated like any other Quaker, whether it's in the classroom or in the
pool."We have challenges just like any other parent," said Lynn, who
teaches at Mary McClelland Elementary School in Wayne Township. "Just like
their children, our child has steps to climb before he reaches another goal.
Our steps might just be a little smaller."Thate is integrated with the
mainstream student population at Plainfield; he also attends special education
classes. His favorite topic is government, he is an avid Indianapolis Colts
fan, and he wants to be a computer repairman someday."I like to be around
my friends, and I enjoy my environment (at Plainfield)," he said.He also
is at home on the pool deck. Although he doesn't compete in every meet, Thate
still enthusiastically encourages his teammates from the sidelines."Kyle
is always encouraging the other kids, just like they encourage him," said
Lynn. "This has just been a real positive experience for him."Thate
also has an uncanny ability to memorize the Quakers' various practice dates, times
and locations. Thate's teammates, mother and coach all chuckle at this element
of his autism."He's basically our walking schedule," said Ward.
"We refer to him for any questions about our schedule."Cavanaugh
laughs."Yep, he's our schedule master," said Cavanaugh. "There
have been times where our kids have challenged him, and 99.9 percent of the
time he gets it right."Thate embraces that challenge, just like the others
that are presented him.That includes dropping six seconds from his personal-best
time in the 50 earlier this season."He's a great reminder that high school
athletics is not always about winning and losing," said Cavanaugh.
http://www.starnews.com/article.php?wfeat05.html
******************************
Prescription drug use varies widely between
states for adults and children
Express scripts releases first-of-its-kind study, reporting state-by-state
medication usage patterns for 23 therapy classes ST. LOUIS, -- Until now, your
age and gender were among the best indicators of how you might use prescription
drugs. With today’s release by Express Scripts of the first comprehensive
state-by-state study of prescription drug use, where you live also can say a
lot about which and how many medications you use. According to the study, the
percentage of adult beneficiaries obtaining at least one prescription in 2000
ranged from a high of 71 percent in Kansas to a low of 58 percent in
California. The average number of prescriptions per member per year varied from
8.3 in New York to 12.2 in Kentucky. Generally, prescription drug use was lower
in the Northeast and West, and higher in the South and Midwest. For children,
the percentage receiving at least one prescription varied from a high of 64
percent in Louisiana to a low of 48 percent in Arizona, with use higher in the
Midwest and West South Central and lower in the West. The Express Scripts
research team, led by Brenda Motheral, RPh, MBA, PhD, tracked age and
gender-adjusted prescription drug use for a random sample of commercially
insured Express Scripts members who were continuously enrolled throughout 2000.
The sample sizes for adults and children were 527,512 and 194,538,
respectively, with more than 700 different client groups represented. “Even
greater variation was found when we examined prevalence of prescription drug
use for 23 of the most commonly prescribed therapy categories,” said Motheral.
For example, use of gastrointestinal drugs was greatest in the South, while
antiasthmatic use was lower in the South. Estrogen use was lowest in the
Northeast. On a state-by-state basis, Kentucky, Louisiana, and Mississippi
ranked in the top five in usage for more than ten of the 23 therapy classes.
Among the lowest utilizing states, Colorado, Minnesota, Oregon and Vermont
appeared in the bottom five 12 times or more and never appeared among the top
five for any therapy class. Variation in non-chronic therapy classes was
greatest for cough/cold/allergy medications and in chronic classes for calcium
channel blockers. Louisiana had the highest prevalence of use of
cough/cold/allergy medications, with 23 percent using at least one
prescription, while Vermont had the lowest prevalence of use at 7.5 percent.
For calcium channel blockers, usage ranged from a high of 5.3 percent in South
Carolina to a low of 1.3 percent in Oregon. “The variation in calcium channel
blocker use could reflect uncertainty regarding diagnosis and treatment,”
explained Motheral, noting that the National Institutes of Health and the
American Heart Association had issued statements cautioning physicians about
the use of certain short-acting calcium channel blockers in specific patient
groups. “For cough/cold/allergy medications, there are a number of potential
explanations for the high degree of variability", added Motheral.
"Among these are climate differences and physicians' propensity to
recommend non-prescription, over-the-counter cough/cold products, as well as
the influence of direct-to-consumer advertising on patient preferences for non-sedating
allergy and decongestant combinations available by prescription.” Among
children, the greatest variation was found for cough/cold/allergy products
(26.7 percent in Louisiana vs. 3.5 percent in Maine), followed by stimulant
therapy for attention deficit hyperactivity disorder (ADHD) (6.5 percent in
Louisiana vs. 1.9 percent in Colorado) and antibiotic cephalosporins (19.5
percent in Louisiana vs. 7.2 percent in Washington). “The higher variation for
use of ADD stimulants likely reflects the uncertainty around the diagnosis and
treatment of ADHD, while the variation in cephalosporin use may relate to
differences in physicians’ propensity to reserve these medications for
second-line use, although differences in bacterial resistance cannot
necessarily be ruled out,” said Motheral. For cough/cold/allergy medications,
the explanation for variation among children is likely to be the same for
adults, according to Motheral. “Overall, children exhibited greater variation
than adults for most therapy classes. Whether greater variation is warranted
for children and/or whether it reflects greater uncertainty by physicians or
caregivers in the treatment of childhood ailments is an important area for
further research,” said Motheral. ###
Express Scripts (NASDAQ:ESRX), a Fortune 500 and Forbes Platinum 400 company,
is one of the largest pharmacy benefit management (PBM) companies in North
America. Through facilities in seven states and Canada, the company provides
pharmacy services and pharmacy benefit plan-design consultation for clients,
including managed-care organizations, insurance carriers, third-party
administrators, employers and union-sponsored benefit plans. Core services
include pharmacy network management, mail and Internet pharmacies, formulary
management, targeted clinical programs, integrated drug and medical data
analysis, market research programs, medical information management, and
workers' compensation programs. The company also provides non-PBM services,
including distribution services for specialty pharmaceuticals through its
Specialty Distribution Services subsidiary. Express Scripts is headquartered in
St. Louis, Missouri. More information can be found at
http://www.express-scripts.com.Express Scripts
Contacts:
Ryan Soderstrom, Corporate Communications 952-837-5160,
ryan.soderstrom@express-scripts.com. David Myers, Investor Relations
314-702-7173, david.myers@express-scripts.com
http://www.eurekalert.org/pub_releases/2002-01/kpc-pdu010302.php
******************************
California Offers Additional Newborn Screening
Tests
For Genetic Birth Defects Using Mass Spectrometry
SAN FRANCISCO, Calif.--(BUSINESS
WIRE)--January 7, 2002--
These Tests May Mean the Difference Between a Healthy
Baby or a Severe Disability for a Baby
Because the March of Dimes mission is to improve the health of babies, the
foundation commends Governor Davis for signing Assembly Bill 2427 (Kuehl) on
September 28, 2000, as it establishes a pilot program for the development
and
evaluation of genetic disease testing, effective today, January 7, 2002.
While California is often a trailblazer for innovative technology and
medicines, the state has lagged behind other states as far as the number of
newborn screenings performed. However, due to the Governor's action, the
number of newborn screenings available in California will increase from four
to approximately 30 different diseases.
"These tests, done immediately after birth, may mean the difference
between
a
healthy life or a severe disability for a baby," said Dr. Jennifer Howse,
president of the March of Dimes. "Tragedy can sometimes be avoided by
quickly
identifying a problem and providing the appropriate medical treatment."
As part of the January observance of Birth Defects Prevention Month, the
March of Dimes is announcing it has widened its core list of recommended
newborn screening tests for all states to include the metabolic disorder
called medium chain acyl-CoA dehydrogenase (MCAD) deficiency -- affecting
about 1 in every 15,000 infants born in the U.S., and can lead to mental
retardation or death if not identified shortly after birth. The other tests
that make up the March of Dimes recommended core list are: phenylketonuria
(PKU); congenital hypothyroidism; congenital adrenal hyperplaisa (CAH);
galactosemia, biotinidase deficiency; maple syrup urine disease; sickle cell
anemia; and hearing screening. California will now be screening for all of
these genetic birth defects, except biotinidase deficiency, through the use
of a tandem mass spectrometer, which electronically "weighs" the
compounds
found in blood samples and can precisely identify unusual levels of certain
molecules not detectable by other means.
"The March of Dimes is convinced that tandem mass spectrometry has reached
the point where we can recommend it for MCAD deficiency testing for every
baby and are pleased it is available in California," said Nancy Green,
M.D.,
associate medical director of the March of Dimes.
Approximately four million infants are born annually in the United States,
and of these, an estimated 150,000 are born with serious birth defects. If
conducted, these newborn screening tests provide early identification of
infants affected by certain genetic, metabolic, hormonal, and/or functional
conditions for which there is an effective treatment with early
intervention.
"The national observance of Birth Defects Prevention Month in January
is a
good time to draw all peoples' attention to the vital importance of newborn
screening tests," said Susan Abbott Rogge, public affairs chair of the
March
of Dimes Northern California Chapter.
The March of Dimes is a national voluntary health agency whose mission is
to
improve the health of babies by preventing birth defects and infant
mortality. Founded in 1938, the March of Dimes funds programs of research,
community services, education, and advocacy to save babies. For more
information, visit the March of Dimes Web site at www.marchofdimes.com, its
Spanish Web site at www.nacersano.org, or call 1-888-MODIMES.
CONTACT:
March of Dimes
Julie Lenden, 415/217-6368
******************************
The SPECIAL NEEDS TRUST AND GUARDIAN WORKSHOP:
Saturday, Feb 9, 2002 10am - Noon.
Shiloh Center, Zion Park District 2600 Emmaus Avenue, Zion
Free presentation for parents and guardians who are concerned about
taking care of their special neds child and the child's siblings in the
event of parent's disability or death.
Special Needs Trusts and Wills be discussed among other things.
The presenters will be Jeffrey Sannes, Certified Financial planner and
instructor in Estate Planning at the College of Lake Cty and Gregory
Papiernik, Attorney and CPA who specializes in special needs and who has
a special needs family member.
Call Marilyn Krieger at 847-746-5500 ext. 445
******************************
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