A 5-year-old boy with autism died last Tuesday after getting a controversial treatment.
According to news reports, the boy, Abubakar Nadama, went into cardiac arrest while undergoing chelation therapy -- his third such treatment -- at Advanced Integrative Medicine Center in Portersville, Pa. It is not yet known whether the treatment was the direct cause of the child's death.
Chelation (pronounced key-LAY-shun) is used to remove heavy metals from the blood. It's approved for acute lead poisoning. The risk is that, in addition to toxic metals, it removes vital minerals from the body.
No form of chelation therapy is approved by the FDA for treating autism. The treatment given to the boy was intravenous EDTA -- ethylene diamine tetra-acetic acid.
That angers autism expert Leslie Rubin, MD, a pediatrician affiliated with Emory and Morehouse universities and president of the Institute for the Study of Disadvantage and Disability.
"I say this emphatically: Chelation is a very risky procedure with no proven benefits for children with autism or related conditions," Rubin tells WebMD.
Unproven Cause, Unproven Treatment
Despite strong evidence to the contrary, many parents believe their children's autism is caused by mercury from thimerosal, a vaccine preservative. A recent Institute of Medicine (IOM) report explicitly rejects this theory. That report also finds no evidence that chelation helps autism.
Nevertheless, many parents treat their children's autism with chelation therapies. Most of them consider intravenous EDTA an extreme treatment, says Sallie Bernard, executive director of Safe Minds, a group that strongly disagrees with the IOM's conclusions.
"The boy who died was using a form of chelation therapy that is not generally recommended or widely practiced within the autism community trying chelation," Bernard tells WebMD. "It is an unusual circumstance. EDTA is not what most of these parents are doing. It is not what is considered the right form of chelation."
Bernard -- under the supervision of a medical doctor -- has treated her own son's autism with oral chelation agents.
That isn't what pediatrician Susan Hyman, MD, would recommend. Hyman, an autism researcher at the University of Rochester, N.Y., has studied complementary and alternative treatments for autism.
"When you have no cause and no cure, you have a lot of frustration," Hyman tells WebMD. "As a doctor you can prescribe chelation for autism, but the efficacy just hasn't been demonstrated."
So why do so many parents say it works? Hyman says that most parents who try chelation don't give up on other, more effective treatments for their children. But when the kids improve, they think it is chelation that did the trick.
"Many advocates of unproven treatments, such as parents of young children with autism, have such hope and desire that an unproven treatment is going to work that they do discern an improvement," Hyman says.
But Rubin insists that uncertain benefits are no reason to subject children to known risks. Instead of trying risky treatments, he advises parents that there are many things known to work.
"I say to parents who want to try chelation, 'If I was in your position, I would feel as eager as you to do anything for my child,'" he says. "But what works is active, intensive, occupational therapy. What works is speech therapy, horseback-riding therapy, swimming. Parents, you do more than you realize by being loving and caring. We don't know where your child is going to go developmentally, but we will make sure they get to the best they can go."
A Call for Research
Bernard says the Pennsylvania boy's death underscores the need for more research on chelation treatment.
"If we had research so that we knew, number one, does chelation work or not work, and number two, what is the best way to do it, then any parent could make a better decision based on evidence-based medicine," she says. "Now every parent is left to his or her own resources. Obviously some parents may not know the right way to do this. If we had some science, everybody would be better off."
SOURCES: The Pittsburgh Tribune-Review, Aug. 25 and Aug. 26, 2005. Leslie Rubin, MD, Emory and Morehouse universities, Atlanta; president, Institute for the Study of Disadvantage and Disability. Susan Hyman, MD, associate professor of pediatrics, Strong Children's Research Center, University of Rochester, N.Y. Sallie Bernard, executive director, Safe Minds.