Boy dies during chelation treatment

These are very sketchy details from a breaking story that will put the biomedical treatment of "autism" in the spotlight. How it will be spun is anybody’s guess.

Autistic boy dies during controversial treatment
Wednesday, August 24, 2005

By Karen Kane and Virginia Linn, Pittsburgh Post-Gazette

A 5-year-old Monroeville boy died this week during a medical treatment that's being touted by some as a cure for autism.

The autistic boy died while receiving chelation -- an intravenous injection of a synthetic amino acid known as EDTA, for ethylene diamine tetraacetic acid. The Food and Drug Administration has approved the practice only to treat heavy metal (such as lead) poisoning. The treatment is becoming increasingly popular, though still controversial, for autism.

Police are investigating the boy's death, which occurred Tuesday morning in the office of Dr. Roy Kerry in Portersville. Kerry did not return calls today.

An autopsy conducted today was inconclusive. Results on the cause and manner of death are pending additional testing that could take up to five months to complete, authorities said.

Despite a lack of details, several points can be made immediately.

First, no matter what the actual, physical cause of the child’s death, he died because his parents chose to treat their son’s “autism” as having a biological cause subject to biomedical treatment. The boy's parents, who have my prayers, made the kind of decision many parents are faced with and not just for “autism.” For example, many children have non-fatal conditions that can be improved through elective surgery during which an allergic reaction or some other unforeseeable event causes more harm or even death. Making such a choice is an awesome responsibility (been there done that) and no one should blame these parents for the decision they made in what they felt was the best interest of their child.

Second, the fact that this child died during a chelation treatment does not invalidate the plausibility of biomedical treatment for autistic symptoms. However, every parent should understand that biomedical treatment of autistic symptoms is controversial, experimental in many cases, not a magic bullet, not something that should be considered lightly and above all, not something that parents should administer themselves.

Third, although a number of physicians are using biomedical approaches to treating autistic symptoms with remarkable success, whenever there are people suffering there are charlatans and con men waiting to take advantage of them. This comment is not to disparage without evidence Dr. Kerry, whom I know absolutely nothing about, but it is meant as a general comment.

Again, isolated instances of abuse does not invalidate the concept. Only research and testing can do that, and despite the fact that parents are on their own researching biomedical help for their children, government health agencies refuse to acknowledge the cases of success and investigate the potential benefits. Rather than risk a sin of commission -- “wasting” resources on a treatment alternative that may not work -- bureaucracies prefer the sin of omission -- do nothing and no one can place blame for the silent suffering of families that might be helped.

Finally, it is important to understand the cause of death before leaping to conclusions. It’s not medical jargon, but saying “chelation really screws up a body’s chemical balance” more than adequately makes the point. In one sense, biomedical treatments for autistic symptoms are like chemical treatments for cancer. The precision one would like is not there and a great deal depends on the diagnostic ability and clinical methods of the doctor. Unfortunately, parents must make many medical decisions without benefit of expert resources.

After all is said and done, however, the real question is whether or not there were potential benefits from chelation that justified risking this child's life. I have written about and supported the plausibility of the theory that thimerosal found in childhood vaccinations causes mercury poisoning in some children. I have supported the idea that some children can and do respond to biomedical treatments. In doing so, I put myself at risk for some of the more nasty email I have received saying that this child was murdered and I have “blood on my hands.”

I do not take those comments lightly.

I recognize and accept that because of my articles some people might not vaccinate their children with disastrous results. Some might elect biomedical treatment without properly investigating it with tragic consequences. That is the risk of a sin of commission, and one I considered long and hard before I wrote my first article on this topic.

Nonetheless, the conclusions I have arrived at are where the evidence leads. To operate from a position of self-interest, as bureaucracies always do, is to hide behind the anonymity of omission and ignore the suffering of children that might benefit from biomedical treatment. I will stand on what I believe and accept the risk and the consequences if I am wrong. I can only wonder if those that achieve some level of satisfaction from vindictive email appreciate the anguish of families that they refuse to acknowledge.

Update: Some comments from readers that evidence biomedical treatments are controversial, but also can be effective.

From a Ph.D. Medicinal/Pharmaceutical Chemist

EDTA itself, although not recommended for mercury toxicity, is generally quite safe and has been shown to have some effect on mercury toxicity. There are virtually no cases of toxicity associated with its administration except at very high dose levels, although there may have been deaths associated with an allergic response or other manifestation. Most likely the child was being treated for both lead and mercury toxicity, with the rationale being that the EDTA will pull the lead and at least some of the mercury, thus reducing the synergistic toxicity associated with lead/mercury toxicity. IV infusion is always risky and as a general rule, I would never agree to have my nine year old autistic son treated in that way. We use many interventions for my son, one of which is a DMSA/ALA chelation protocol of DAN, although we have gone very slowly in this approach.

From a mother whose son has made significant developmental improvement with a gluten free/casein free diet and several nutritional supplements (edited for brevity).

He is ready to start chelation therapy.

This was bittersweet news as I had just learned from the message boards of the boy's death during EDTA IV therapy. I really can't voice an opinion on the tragedy until many more details are released.

But I did need to fully reconsider using chelation on my son and have decided to proceed as planned [using] a nutritional form of DMSA and a slower chelation protocol [with] a number of supplements to replace the minerals and vitamins that the DMSA effects. It will take longer to get results, but this method has proven to be safe and effective for children. My son has done a pre-test with DMSA and will continue with periodic quantitative testing.

If we couldn't afford a DAN! doctor to see us through the biomedical treatments, I don't know what I'd do. If my son was older (he turned 4 in June) or was on the severe end of the ASD spectrum or had unsuccessfully been through the conservative biomedical treatments like DMSA, I don't know what I'd do. Actually I do know what I do. I'd spend hours and hours researching the more aggressive biomedical approaches. Hopefully if I ever get to that point, more of the medical community will have joined the biomedical treatment effort so I won't have to make a faith based decision on which direction to go.

It should be noted that these parents took an active yet cautious role in their children's treatments. That approach cannot be emphasized enough.

Update: Associated Press version of the story.

Update: Some additional insights at Adventures in Autism (read the comments).

Update: The Pat Sullivan blog looks at EDTA treatment from an adult, personal perspective. There's also a link to an expanded story in the Post-Gazette.