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http://www.msnbc.msn.com/id/13102473/
MSNBC
The unorthodox practice of chelation
No one knows what causes autism, but one theory has ignited an intense
debate
By John Larson
Correspondent
NBC News
Updated: 7:41 p.m. ET June 4, 2006
Autism is a mysterious and devastating disorder that is believed to
affect
as many as 500,000 children in this country. No one knows for certain
what
causes autism, but one theory — chelation— has sparked controversy.
Now, Jim
Adams wants to put that theory to the test. In a desperate quest for
answers, he is using his scientific know-how to test a controversial
therapy
called "chelation." And he has a special reason for taking on this
mission —
his daughter Kim. This report aired Dateline Sunday, June 4, 7 p.m.
Kim Adams knows every word, every move, every pause by heart because
she has
watched this same video thousands of times.
Kim Adams, autistic girl: Barney’s Birthday!
Like many diagnosed with autism, she is trapped in a world of
repetition and
ritual.
For example, her father Jim knows his daughter will want two braids
because
it is Wednesday. Kim insists on wearing two braids and a dress to
school
every Wednesday.
Her need for order is extreme. Even a minute change in routine, like a
spot
appearing on her father's shirt, can make her world feel frighteningly
out
of whack.
Kim Adams: Daddy’s shirt…
Jim Adams, Kim's father: Oh, daddy’s shirt is dirty.
Kim Adams: Mommy, daddy’s shirt is dirty.
Marie Adams, Kims mother: That’s okay.
At 13 years of age, Kim is still a child who needs help with life's
most
basic skills. She can't brush her teeth without a list of directions,
or
make her bed without a series of pictures.
Jim Adams: My little girl was diagnosed with autism at age
two-and-a-half.
We were told it was a lifelong, incurable disorder. There was nothing
we
could do for her, that it was just a matter of time until we’d probably
have
to institutionalize her. It was absolutely crushing.
Jim and his wife, Marie immediately ruled out institutionalizing Kim.
And
although already raising two other children, they began doing
everything
they could for Kim — special diets, special teachers, special classes.
While
she appeared normal, Kim couldn't speak, couldn't follow simple
instructions, and made little eye contact.
Marie Adams: Then as she got older, you know her anger, her tantrums,
her
aggression — she used to hit, kick, bite. When she was older, she
knocked
holes in the walls.
A professor of chemistry at Arizona State University by day, Jim Adams
studied autism at night, learning about brain development and damage,
how
the brain interacts with vitamins, minerals and metals.
He sought out others concerned with the rising number of children being
labeled autistic — parents and scientists who also wondered how a
condition
that was diagnosed in only one in 100,000 children in the 1980s was two
decades later diagnosed in as many as one in every 175 American
children.
He started hearing stories about damage done to people exposed to
methyl
mercury, the kind found in thermometers and in polluted environments.
There
was the mercury spill in Japan that led to mercury laden fish and
Minimata
disease, affecting many who ate the fish.
He heard about Pink Disease, also called Acrodynia, a mysterious
condition
that afflicted children in this country roughly a hundred years ago.
The
symptoms included social withdrawal and lack of language. The condition
disappeared almost overnight when a certain type of teething powder
which
contained mercury was removed from the market.
Jim Adams: There is no doubt that the mercury in the teething powders
was
what caused Acrodynia, and that symptoms of Acrodynia were pretty
similar to
symptoms of autism.
John Larson, Dateline correspondent: What’s your basic idea here? That
mercury causes autism or that somehow makes it worse?
Jim Adams: We think that it’s a combination of a genetic susceptibility
leading to a decreased ability to excrete mercury. So that these kids
are
not necessarily dosed to high levels of mercury, but that simply, they
are a
small subset of the population that they have unusual genes, that they
just
can’t excrete mercury very well.
Larson: Jim’s suspicion that mercury might somehow be connected to the
rise
in the number of children diagnosed with autism places him near the
center
of one of the most hotly contested and politically charged medical
debates
of our time — one that has pitted activist parents against federal
health
officials and vaccine manufacturers, because mercury in children often
comes
from vaccines.
Vaccines -- those life-saving miracle drugs that have successfully
fought
back everything from polio, small pox, and diptheria, to measles, mumps
and
rubella. It began to be phased out a few years ago, but until then,
most
infant vaccines included something called ethyl mercury in a
preservative
called thimerasol.
Although different from methyl mercury, the kind found in pollution,
ethyl
mercury in high enough doses, can also damage the nervous system.
Jim Adams: Thimerasol was introduced into vaccines before the FDA even
existed. It was just grandfathered in. And then as children begain
receiving
more vaccines in the vaccination schedule, the amount they received
kept
growing and growing until 1999 when Congress asked the FDA to evaluate
the
amount of mercury in all the pharmaceutical products.
What the Food and Drug Administration discovered was that along with
getting
more shots, by 1992, children were also getting more mercury. The
vaccines
undoubtedly were protecting the children from a variety of deadly
diseases,
but were they also causing autism in some children?
In order to answer that question, the Centers for Disease Control and
Prevention commissioned two reports into the issue, both of which
dismissed
thimerasol as the problem. Dr. Tanya Popovic is the CDC's Associate
Director for Science Research.
Tanya Popovik, CDC Associate Director for Science Research: Top-notch
scientists have reviewed everything and anything that is available and
have
really in their latest report said that they reject causal association
of
thimerasol in vaccines and autism.
The American Academy of Pediatrics and many other scientists also
reject the
link between vaccines and autism and are concerned the debate over
mercury
will discourage parents from vaccinating their children.
Click for related content
Producer: Why do a story on an unorthodox practice?
But despite the stance of mainstream science, thousands of parents, and
even
some scientists, claim there is a growing body of evidence to suggest
there
might be a connection between mercury and autism.
And they point to the benefits of a radical new treatment to help make
their
case.
Julia Berle, mother of autistic child: It saved my child.
This mother and thousands of other parents have turned to a process
called
chelation.
Chelation involves ridding the body of metals, including mercury. In
its
most aggressive form, it is done intravenously, but most parents give
their
autistic children a milder oral medication, or as in this case, a cream
that
is absorbed through the skin. The chelation agent binds to the mercury,
which is then passed through the system.
Originally approved for treating lead poisoning, there are parents who
claim
chelation has helped cure their children's autism.
The parents share stories and home videos of what they describe as
their
children's recoveries.
Some report their children going from agitated repetitive behaviors to
simply being calmer and able to focus. From being unable to use
language, to
being able to express themselves— from almost complete withdrawal, to
interacting with their families again. But most doctors aren't buying
those
stories of near-miraculous recovery.
Dr. Jay Berkelhamer, presidnet of American Academy of Pediatrics: The
usefulness of chelation therapy in treating autism is nil.
Dr. Jay Berkelhamer is the President of the American Academy of
Pediatrics.
Like most doctors Dateline spoke with, he pointed out the process can
be
dangerous. Performed intravenously, it even led to one death.
Dr. Berkelhamer: Chelation therapy is potentially toxic. The chelation
material that are used to remove these metals from the bloodstream can
affect the liver and the kidney.
The reason most doctors agree with the American Academy of Pediatrics
is
because they don't believe mercury from vaccines is the problem in the
first
place. They say some autistic children may just outgrow the problem, or
improve from behavioral and other therapies, but that autism isn't
cured by
removing metals from a child's system.
CONTINUED: Testing the theory
But despite the position of mainstream science on chelation, for Jim
Adams
and some other scientists, the verdict is still out.
Jim Adams: It’s a very controversial topic. There have been a number of
epidemiology studies looking at it, Some showing absolutely no link,
some
showing a very strong link. It depends, I think, very much on who does
the
research. I think the most critical issue is looking into thimerasol.
So Jim Adams has decided to do just that. Along with Dr. Matt Boral of
the
Southwest College of Naturopathic Medicine — an accredited school of
alternative and integrated medicine — he has designed the first
double-blinded, placebo-controlled study of chelation. The mission: to
answer the question of whether chelation really works, or whether it's
just
the wishful thinking of desperate parents.
John Larson, Dateline correspondent: You’ve got strong feelings about
the
connection between mercury and autism. Are you the guy who should be
doing
this study? Will critics come out and say, “Well, here, he just proved
what
his suspicions were?”
Jim Adams: I think that if someone else were to do the research, I’d be
thrilled. But the fact is no one else has done it and thousands of
families
are out there using it. And so, because it’s pretty much the most
highly
ranked treatment according to a survey of 23,000 families, I think
there’s a
lot of good reason to do it.
But he already knows chelation does not work for everyone.
Chelation did not help his daughter, Kim, perhaps Jim says because it
was
done too late. But regardless of why it didn't work, he wants to know
if
chelation can help any autistic children. After all, he is not just a
chemist in search of knowledge, but a father who knows the desire for a
cure.
John Larson: What happens in the end, after all this hard work? If you
find
that there really is no relation between mercury and autistic behavior.
Will
you be disappointed?
Jim Adams: Disappointed, yes. But whatever way it turns out, we’ll
report
it. If it doesn’t help, we’ll report it. And if it does, we’re gonna
report
that, too.
Public health officials stress the need to vaccinate children against
known
diseases. Today most American children under the age of two years are
automatically vaccinated with mercury-free vaccines, and parents can
ask
their pediatricians about getting thimerasol free vaccines for their
older
children. Some experts also suggest requesting mercury-free flu shots
for
pregnant women, infants and children.
Jim Adams predicts he'll have the final results of his study by the end
of
the year, and we'll have them first, here on Dateline. You should know
that
most children under the age of two are now automatically given
mercury-free
vaccines, and parents can request those shots for their older children
as
well.
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