Chelation study on Autism called off

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Chelation Study for Autism Called Off
Controversial Trial Too Risky, Panel Says
By Salynn Boyles
WebMD Health NewsReviewed by Louise Chang, MDSept. 18, 2008 -- Federal officials have abandoned a proposed study of a controversial alternative therapy for autism, leaving parents who believe in the treatment disappointed and angry about the move.

In a statement released Wednesday, the National Institute of Mental Health (NIMH) says its investigators would not go forward with a trial of chelation (pronounced kee-LAY-shun) therapy that has been discussed for the past two years.

The decision was made after the federal review board that originally approved the study reversed its position.

The study had reportedly been on hold since last year when animal trials linked a specific chelation treatment to brain damage in rats.

"The Board determined that there was no clear evidence for direct benefit to children who would participate in the chelation trial and that the study presents more than a minimal risk," according to the NIMH statement.

Chelation for Autism
Chelation therapy involves the administration of agents to remove heavy metals from the blood, usually, but not always, by intravenous infusion.

The therapy has been approved for more than 50 years for the treatment of lead poisoning, but it is not approved for the treatment of autism.

Nevertheless, many parents who believe their children's autism was caused by mercury exposure from a preservative once common in childhood vaccines have embraced chelation therapy.

"Our phones have been ringing off the hook since this was announced," Rebecca Estepp of the autism support group Talk About Curing Autism tells WebMD.

"We are dumbfounded and saddened that this study of a promising autism treatment will not happen. The government has pulled the rug out from under us with no explanation."

Estepp, whose 10-year-old son is autistic, says she knows of thousands of children who have improved and even had their autism symptoms disappear following chelation therapy.

"Do we have to have thousands more before they take us seriously?" she asks. "When does the anecdotal evidence get so large that they have to listen to us?"

A Chelation Death Reported
The use of chelation therapy as a treatment for autism has been linked to at least one death in 2005 of a 5-year-old boy who was treated with an agent that is not widely used in children.

In the statement released yesterday, NIMH officials noted that approval by the Department of Health and Human Services (DHHS) was needed to proceed with the trial. But NIMH will not ask the DHHS to review the study protocol, a process that could take as long a year.

"Given the time and resources required for this additional approval process, NIMH has decided to use its intramural program to test other interventions for autism and will not pursue the required DHHS review," the statement reads.

Physician Paul Offit, MD, who this month published a book that is critical of alternative treatments, applauds the NIMH decision.

http://www.webmd.com/brain/autism/news/ ... called-off

Yes I heard about this some weeks ago. I've being pointing out to those that think chelating is harmless, that it could be more harmful than what it attempting to remove. Also that if heavy metal was a cause (which is unlikely) the damage would have already been done.

It's so sad that that 5-year-old boy had to die because his parents didn't accept him for who he was.

I am glad that chelation studies are not going ahead. Ugh, chemical injections... talk about child abuse.

I think they should perform the study, even if just to debunk chelation as a treatment. If kids are participating in a study, they can be closely monitored for mineral deficiencies, or whatever it is which is causing the problem in kids who died. Parents are going to chelate their kids anyway, so they might as well find out whether or not it is effective. Although actually, autism parents have shown a disturbing tendency to ignore repeated studies debunking popular autism theories, so maybe disproving the efficacy of chelation treatment wouldn't make a difference after all.

This is where I get caught in a quandry on this, too. There are so many parents who firmly, FIRMLY believe that chelation has helped their child, and so many other parents listening to them, that it seems they could have found willing study participants who were going to receive the treatment anyway. I wish those parents would hear the reason the study was called off and understand, but I don't think they will. The anecdotal evidence in that community is too strong. I have read some of the stories myself, and gone back and forth about it with the parents, and there is just no persuading them that it wasn't the therapy that helped their child make such huge progress. Whether or not continuing this study would have changed their minds, however, will always be another open question. Perhaps that was a second factor in discontinuing; they figured no one was going to believe the results anyway. After all, people who believe that big pharma is pulling the strings are a tough group. Wonder if they've ever though about all the money big pharma must be making off chelation sales?

Regardless of whether a parent OK's a child for testing, it's ultimately the child's brain that will be damaged as a result of the tests. So no, I don't think it's acceptable for the study to be done on anyone but willing adults (who are capable of deciding for themselves).

As for the chelation that is currently being conducted on children, I think the preliminary tests on rats should give the FDA enough evidence to ban it as a treatment of autism.

I know it is not even in the same league with a parent and their child, but this is the same dynamic I had with going to a famous Spa in the Mall of America. It was for a specific treatment for hair removal and was supposed to be superior to electric epilation. Well, it wasn't and by the time I became vocal about it I was told I had a medical condition and I didn't reveal it before I started the treatment ( I had paid up front, of course) so they were not responsible for my failure of the treatment. I had wanted it to be the end of my issues with the permanant hair removal, but it was actually just the end of my $500.00.

when people invest their time and effort and money into a specific situation they can't emotionally let it go. Probably the improvement they get is the family emotionally pulling together through the treatment, making better emotional and mental communication for all of them.

Merle

Could someone tell me what chelation is?

What’s chelation therapy?
Chelation therapy is administering a man-made amino acid called EDTA into the veins. (EDTA is an abbreviation for ethylenediamine tetraacetic acid. It’s marketed under several names, including Edetate, Disodium, Endrate, and Sodium Versenate.) EDTA is most often used in cases of heavy metal poisoning (lead or mercury). That’s because it can latch onto or bind these metals, creating a compound that can be excreted in the urine.

Besides binding heavy metals, EDTA also "chelates" (naturally seeks out and binds) calcium, one of the components of atherosclerotic plaque. In the early 1960s, this led to speculation that EDTA could remove calcium deposits from buildups in arteries. The idea was that once the calcium was removed by regular treatments of EDTA, the remaining elements in the plaque would break up and the plaque would clear away. The narrowed arteries would be restored to their former state.

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Autism and Chelation

The belief is the 'heavy metals' of the mercury in children's vaccines that causes the autism.