Jul 9, 7:46 AM EDT
Fringe autism treatment could get federal study

By CARLA K. JOHNSON
Associated Press Writer

CHICAGO (AP) -- Pressured by desperate parents, government researchers
are pushing to test an unproven treatment on autistic children, a move
some scientists see as an unethical experiment in voodoo medicine.

The treatment removes heavy metals from the body and is based on the
fringe theory that mercury in vaccines triggers autism - a theory
never proved and rejected by mainstream science. Mercury hasn't been
in childhood vaccines since 2001, except for certain flu shots.

But many parents of autistic children are believers, and the head of
the National Institute of Mental Health supports testing it on
children provided the tests are safe.

"So many moms have said, `It's saved my kids,'" institute director Dr.
Thomas Insel said.

For now, the proposed study, not widely known outside the community of
autism research and advocacy groups, has been put on hold because of
safety concerns, Insel told The Associated Press.

The process, called chelation, is used to treat lead poisoning.
Studies of adults have shown it to be ineffective unless there are
high levels of metals in the blood. Any study in children would have
to exclude those with high levels of lead or mercury, which would
require treatment and preclude using a placebo.

One of the drugs used for chelation, DMSA, can cause side effects
including rashes and low white blood cell count. And there is evidence
chelation may redistribute metals in the body, perhaps even into the
central nervous system.

"I don't really know why we have to do this in helpless children,"
said Ellen Silbergeld of Johns Hopkins University's Bloomberg School
of Public Health, who was invited to comment on the study to a review
board of the national institute.

Despite lawsuits and at least one child's death, several thousand
autistic children are already believed to be using chelation
(pronounced kee-LAY'-shun), their parents not content to wait for a
study.

Among those parents is Christina Blakey of suburban Chicago, who uses
chelation and a variety of other alternative therapies, including
sessions in a hyperbaric chamber, on her 8-year-old son, Charlie.

Before he started chelation at age 5, Charlie suffered tantrums. When
she took him to school, she had to peel him off her body and walk
away. But three weeks after he began chelation, his behavior changed,
she said.

"He lined up with his friends at school. He looked at me and waved and
gave me a thumbs-up sign and walked into school," Blakey said. "All
the moms who had been watching burst into tears. All of us did."

There is no way to prove whether chelation made a difference or
whether Charlie simply adjusted to the school routine.

Autism is a spectrum of disorders that hamper a person's ability to
communicate and interact with others. Most doctors believe there is no
cure.

Conventional treatments are limited to behavioral therapy and a few
medications, such as the schizophrenia drug Risperdal, approved to
treat irritability.

Frustrated parents use more than 300 alternative treatments, most with
little or no scientific evidence backing them up, according to the
Interactive Autism Network at the Kennedy Krieger Institute in
Baltimore, Md.

"With a lot of mothers, if they hear about a treatment, they feel like
they need to try it," said project director Dr. Paul Law. "Anything
that has a chance of benefiting their child, they're willing to give
it a shot."

More than 2 percent of the children tracked by the project use
chelation. If that figure holds for the general population, it would
mean more than 3,000 autistic children are on the treatment at any
time in the United States.

Chelation drugs can be taken in pill form, by rectal suppository and
intravenously.

Dr. Susan Swedo, who heads the federal institute's in-house autism
research and wants to study chelation, gained notoriety by theorizing
that strep throat had caused some cases of obsessive compulsive
disorder. The theory was never proved.

She proposed recruiting 120 autistic children ages 4 to 10 and giving
half DMSA and the other half a dummy pill. The 12-week test would
measure before-and-after blood mercury levels and autism symptoms.

The study outline says that failing to find a difference between the
two groups would counteract "anecdotal reports and widespread belief"
that chelation works.

But the study was put on hold for safety concerns after an animal
study, published last year, linked DMSA to lasting brain problems in
rats. It remains under review, Insel told the AP.

Insel said he has come to believe after listening to parents that
traditional scientific research, building incrementally on animal
studies and published papers, wasn't answering questions fast enough.

"This is an urgent set of questions," Insel said. "Let's make
innovation the centerpiece of this effort as we study autism, its
causes and treatments, and think of what we may be missing."

Last year, the National Institutes of Health spent less than 5 percent
of its $127 million autism research budget on alternative therapies,
Insel said. He said he is hopeful the chelation study will be
approved.

Others say it would be unethical, even if it proves chelation doesn't
work.

Federal research agencies must "bring reason to science" without
"catering to a public misperception," said Dr. Paul Offit, chief of
infectious diseases at the Children's Hospital of Philadelphia and
author of an upcoming book on autism research. "Science has been
trumped by politics in some ways."

Offit is concerned vaccination rates may fall to dangerous levels
because some parents believe they cause autism.

Dr. Martin Myers, former director of the federal National Vaccine
Program Office, said he believes giving chelation to autistic children
is unethical - but says the government can justify the study because
so many parents are using chelation without scientific evidence.

"It's incumbent on the scientific community to evaluate it," he said.

Actress Jenny McCarthy, whose bestseller "Louder Than Words" details
her search for treatments for her autistic son, Evan, told thousands
of parents at a recent autism conference outside Chicago that she
plans to try chelation on him this summer.

"A lot of people are scared to chelate ... but it has triggered many
recoveries," she said.

But those claims are only anecdotal, and there are serious risks.

Of the several drugs used in chelation, the only one recommended for
intravenous use in children is edetate calcium disodium. Mixups with
another drug with a similar name, edetate disodium, have led to three
deaths, including one autistic child.

A 5-year-old autistic boy went into cardiac arrest and died after he
was given IV chelation therapy in 2005. A Pennsylvania doctor is being
sued by the boy's parents for allegedly giving the wrong drug and
using a risky technique.

No deaths have been associated with DMSA, which can cause rashes, low
white blood cell count and vomiting. It is also sold as a dietary
supplement, which is how some parents of autistic children get it.

A Food and Drug Administration spokeswoman said the agency is "is
looking into how these products are marketed."

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On the Net:

National Institute of Mental Health: http://www.nimh.nih.gov/

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