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 Posted: Sun Sep 02, 2007 5:58 pm
More from GRASP's mailing list. Searching for a "cure" for autism can be deadly. These articles are proof.
WPXI.com
Western Pa. Doctor Charged In Autistic Boy's Death
Police Say Child Died Of Cardiac Arrest After Receiving Chelation Treatment
POSTED: 2:35 pm EDT August 22, 2007
UPDATED: 4:04 pm EDT August 22, 2007
PITTSBURGH -- A western Pennsylvania doctor was charged with involuntary manslaughter Wednesday because state police said he caused the death of a 5-year-old autistic boy two years ago.
Dr. Roy Eugene Kerry, who has offices in Greenville and Potersville, was
charged in the death of Abubakar Tariq Nadama.
The boy suffered from autism, which some people believe can be caused by heavy metal poisoning, and authorities said he died of cardiac arrest
after receiving chelation treatment. The federal government has approved
chelation for cases of acute heavy-metal poisoning, but not to treat autism.
The boy's parents have already filed a wrongful death suit against Kerry, and the Department of State was trying to revoke Kerry's license
for his treatment of the boy.
The receptionist at Kerry's Greenville office said he was too busy treating patients to come to the phone.
It was not clear if police plan to arrest Kerry or mail the charges to him.
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Posted: Sun Sep 02, 2007 5:59 pm
Autism 'cures' may be deadly
BY DELTHIA RICKS | delthia.ricks@newsday.com
August 21, 2007
Alternative treatments for autism - some of them potentially deadly - are growing more pervasive and run the gamut from dietary supplements to prescribing a potentially dangerous diabetes drug, which now carries the government's most stringent warning.
"What this all boils down to is that people are very motivated to help their children. They're desperate and there are people out there who are preying on their desperation," said James Mulick, a professor of pediatrics and psychology at Ohio State University. Autism is an incurable neurodevelopmental disorder usually diagnosed in early childhood and marked by language and communication deficits and withdrawal from social contact.
Mulick cited diets, such as those in which the wheat protein gluten is eliminated, to the use of vitamin supplements as some of the harmless but he believes ineffective treatments sought by parents of autistic children.
Chelation therapy, Mulick said, is a potentially dangerous process that uses a compound that is supposed to remove heavy metals from children's tissues. Many parents believe mercury contained in routine vaccines is the cause of autism. A 5-year-old Pittsburgh boy with autism died in 2005 after undergoing chelation therapy, according to news accounts.
Mulick and his collaborators reported their results yesterday at the American Psychological Association's annual meeting in San Francisco. He said in a telephone interview that autism is a "magnet for all kinds of unsupported or disproved therapies."
Dr. Marvin Boris of Autism Associates, a treatment center in Woodbury, defended chelation therapy, saying autistic children on Long Island have thrived after undergoing the process. He added that he and his colleagues also prescribe Actos, the Type 2 diabetes drug, to children with autism. Last week Actos received a "black box warning" from the U.S. Food and Drug Administration, the agency's strongest level of caution. Actos, and a similar diabetes drug, Avandia, can increase the risk of heart failure, the FDA warned.
Boris said he prescribes Actos to autistic children in what the FDA calls an "off label" use, meaning it is not being used for the reason the drug was approved. Such a practice is legal but Sandy Walsh, a spokeswoman for the FDA in Washington, D.C., said that Actos is not approved for pediatric usage.
Mainstream researchers posit that genetic mutations underlie autism but Boris said he believes that autism is an autoimmune disorder, in which components of the immune system attack the body.
As for chelation therapy, he said, "Our practice has performed thousands of chelation therapies and tried to remove mercury and lead in these children, and we have good results and have improved children with this therapy."
Dr. Joel Bregman, medical director of the Fay J. Linder Center for Autism in Bethpage, which is part of the North Shore-LIJ Health System, said he had never heard of the use of a diabetes medication for autism.
"Parents are so desperate for answers and treatment that when they hear about a potential 'miracle' it's hard for them to turn their backs on it," he said.
Dr. Eric Gould in Great Neck, who treats children with developmental disorders, said he is concerned that offbeat therapies are flourishing.
Questionable treatments
Chelation therapy Involves introducing a substance into the body, usually ethylene diamine tetra acid, that is meant to attract heavy metal. The metals, if they are present, are then excreted in urine and feces.
Dietary therapies These can include daily multivitamin tablets and megadoses of vitamins C and B6. Omega-3 fatty acids are also popular.
Drug therapy On Long Island, some doctors prescribe the diabetes drug Actos. The drug, which has caused heart failure in adults, is administered in what the FDA calls "off label" usage, which is legal. The FDA reports that Actos is not approved for children, however.
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Posted: Sun Sep 02, 2007 6:00 pm
Source: Ohio State University
Date: August 20, 2007
As Autism Diagnoses Grow, So Do Number Of Fad Treatments, Researchers Say
Science Daily — Ineffective or even dangerous fad treatments for autism,
always a problem, seem to be growing more pervasive, according to
researchers who studied the problem.
“Developmental disabilities like autism are a magnet for all kinds of
unsupported or disproved therapies, and it has gotten worse as more
children have been diagnosed with autism,” said James Mulick, professor
of pediatrics and psychology at Ohio State University .”
“There's no cure for autism, and many parents are willing to believe
anything if they come to think it could help their child.”
Mulick chaired a symposium on “Outrageous Developmental Disabilities
Treatments” Aug. 20 in San Francisco at the annual meeting of the
American Psychological Association. The symposium included presentations
by several of Mulick's students at Ohio State who participated in a
graduate seminar on fad treatments in autism.
Tracy Kettering, a doctoral student in special education at Ohio State ,
said a Google search for the phrase “autism treatment” yields more than
2.2 million matches.
“You get hundreds of different types of therapies that come up, and many
have quotes from parents that claim a particular therapy ‘cured' their
child,” Kettering said.
“It's no wonder that parents want to believe. But very few of these
treatments have any evidence to support them.”
The number and range of fad treatments has seemed to grow in recent
years as more children have been diagnosed with autism, said Mulick, who
is also editor of a book on fad treatments called Controversial
Therapies for Developmental Disabilities: Fad, Fashion, and Science in
Professional Practice.
Mulick said when he began treating autism in the 1970s about 3 children
in 10,000 were said to have autism. Now, reports are 1 in 166 children
have the condition. The number of cases has mushroomed because of better
diagnoses, and a changing definition of autism that includes a broader
range of disorders.
Some of the newer, more popular fad treatments for autism involve
special diets or nutritional supplements. Megadoses of Vitamins C and B6
are popular, as well as supplements with fatty acids like omega-3s.
A casein and/or gluten-free diet, which involves eliminating dairy and
wheat products, has also gained favor with some parents.
While many of these treatments have never been adequately studied, that
doesn't mean they aren't promoted.
“One of the characteristics of fad treatments is that they are discussed
in the media and on the internet, where many parents can be exposed to
them,” said Anne Snow, an Ohio State psychology graduate student.
And while some fads are simply ineffective, others can even be
dangerous, Mulick said. Chelation therapy, which involves taking
medicines to remove the heavy metal mercury from the body, has
reportedly led to the death of at least one autistic boy receiving that
treatment. Chelation therapy was also touted years ago as a new
treatment against some forms of cancer but was eventually shown to have
no helpful effect.
Many parents try multiple approaches, hoping at least one will help.
Kettering said one survey she found suggests that the average parent of
a child with autism has tried seven different therapies.
“We're not saying that all of these treatments don't work or that they
are all dangerous,” Kettering said. “But the research hasn't been done
to suggest that most of them are effective or even safe.”
Many of the treatments may have just enough basis in scientific fact to
attract attention, even if the treatment itself is unproven.
For instance, most scientists believe that many cases of autism are
caused by genetic mutations, and some mutations can be caused by various
chemicals that we encounter in our everyday lives, Mulick said.
But still, there is no evidence that any particular chemical causes
mutations that lead to autism, as some have claimed.
“There's a shred of truth in the rationale presented for some fad
treatments, and that is enough for some people to go with,” he said.
Another reason that fad treatments persist has to do with the natural
course of autism, Mulick said.
Autism, like many conditions, has cycles in which symptoms get worse and
then get better. Parents tend to search for treatments when symptoms are
getting worse, and when their children get better – as they do in the
normal course of disease – parents credit the new therapy.
“It's natural to have this bias that the therapy you're trying has had
some positive effect,” he said. “People want to believe.”
While other treatments are still being investigated, right now the only
therapy that has been shown to have a long-term positive affect on
autism is called Early Intensive Behavioral Intervention, Mulick said.
EIBI is a highly structured approach to learning, in which children with
autism are taught first to imitate their teachers. But this treatment is
very time-consuming and labor intensive. It involves one-on-one
behavioral treatment with the child for up to 40 hours a week for
several years.
“It's expensive and difficult for many parents to use,” Mulick said.
“That's got to be one reason other treatments look attractive to them.”
Mulick said other treatments and therapies are being studied. However,
it takes years to test treatments for autism because of the nature of
the disease and problems with proving effectiveness.
“Autism studies are a long, time-consuming, and expensive process,”
Mulick said. “And some of the fad treatments being used today would
never be approved for testing – they are just too dangerous.”
In addition to Mulick, Kettering and Snow, other presenters at the
symposium included Ohio State graduate students Cristan Farmer, Megan
Norris, Andrea Witwer and Jill Hollway.
Note: This story has been adapted from a news release issued by Ohio
State University.
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