9 Jul 2008

Chelation and autism in Time

Autism is discussed in today's Time; Fringe Autism Treatment Stirs Debate. In the opening sentence, chelation therapy for autism is described as voodoo medicine:
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.
Several times the writer highlights the lack of evidence for chelation as beneficial to autistic people. There is a quote from a believer mum, who reckons chelation helped her five year old son settle at school, followed up with;
There is no way to prove whether chelation made a difference or whether Charlie simply adjusted to the school routine.
Get that, a journalist pointing out the difference between causation and correlation!

National Institute of Mental Health director, Dr. Thomas Insel, is said to support investigation of this potentially dangerous (one fatality) absurdly irrelevant (to autism) form of intervention;
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 said.

The moms may have said it, but that doesn't make it so. Apart from causing the death of a five year old boy, here's a bit more about what chelation can do, followed by a quote from someone who actually seems to have ethical qualms about subjecting children to such unnecessary and potentially painful and risky drugs.

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.

Well said, Ellen Silbergeld.

The glut of quackery associated with autism is described:
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."

What about the fathers? I'm shocked at that attitude of "sure let's give it a go anyway" that is described here. Many of these quack therapies have known risks: HBOT, chelation, massive doses of vitamins, not to mention the distress caused to the poor children forced to put up with them and the expense of consultations with the in-for-profit quacks, the useless and biased tests they order and the equally useless treatments they advise.

More than 2% 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.

Many of the parents who approve of chelation (and are there really as many as 3000 autistic children in the US suffering this treatment?) are at best distrustful of vaccines or an worst raving anti-vaccine loons. How do they reconcile the cognitive dissonance of administering drugs with known and common side effects with their fear of vaccines which have an extremely low risk of side effects?

The potential danger of a chelation trial is further explained:
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."

The drug they want to study caused brain damage in animal models, but Dr Insel wants to push on regardless?! He says he's worried that they're going at this too slowly. Don't ethics matter with autistic people? My husband has told me of the difficulty he has getting ethical approval for trials of therapies for people with a fatal form of cancer. Even in people who have no hope of survival, the ethics committees block trials and take their role of protecting patients with cancer seriously. Autistic children deserve nothing less.

Interestingly, indigo/autism healer/model/actress/Google Uni PhD/vaccine campaigner Jenny McCarthy, who has many times claimed that her son has been "recovered" from autism, has now said she will have him chelated.

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

And she's been on Google for ages so she knows.


Addendum

Here are a few other posts about this topic:

And a comment from HCN on Kristina's post that highlights something important;

Wouldn’t it be useful to do a matched pair experiment design, which would involve also chelating a bunch of “normal” kids? Would the (very real) risk of chelating be too much to endanger these “normal” kids?

In that case, why would it be acceptable to to endanger the health of the autistic kids?

Why not indeed.

11 comments:

Maddy said...

Sadly it's all too true, in that mass panic and desperation [and ignorance] make people try anything.

That said, when I first started researching autism from a position of complete ignorance on the computer, if you google anything there are a whole stream of advertisements on the right hand side of the screen which when you [me!] know nothing, certainly draw the eye.
Best wishes

Hannah Zimmerman said...

This is a really interesting post. When I was looking around the web for autism websites and blogs, I found a good article in the Pitch newspaper about one of the best school districts in MO abandoning its autistic students. Here is the link if you would like to take a look...www.pitch.com.

Navi said...

I agree Chelation is dangerous and scary, but we need scientific research on it because so many parents are subjecting their children to it without the research to back it.

Yes, there will be people who still swear by it, even when the research shows it doesn't help, but it may sway the odd person who is just considering it because they heard it helps. and frankly, I'd rather children be chelated under the unbiased supervision of researchers, where controls are in place to ensure safety, rather than by a dr. trying to make a buck.

Foresam said...

You forgot to weigh the side effects of autism versus chelation. Kids with autism will be institutionalized for their entire adult lives, they'll never learn to read or write, will not be toilet trained, will never have a friend, will never get laid, etc.. That makes a few rare side effects worth the risk.

Mark Moran said...

The federal NIMH has put a study of chelation in autism on hold because of significant safety concerns; why would anyone forge ahead with this until a study is done ? See article linked to my name.

Sharon said...

Hi Maddy.
I know what you mean about panic and desperation making people vulnerable. One more reason to despise the sharks who prey on them with their false claims and dangerous quack "cures". It's sad if people are swayed by Google ads, but obviously they are or the companies wouldn't put so much into funding them.

Hannah, thanks for commenting here. I'll have a read of the link you posted. It's a shame that autistic children have such a hard time getting appropriate education. That's one of the things parents advocates should be fighting for, not nonsense like chelation.

Navi, the problem is that the mercury believers will not change their minds even if a study of chelation was performed and proven to be of no benefit. Read the link at Science Based Medicine for a really good explanation for why the study just should not happen.

Forsam, I don't agree with a a word you wrote.

Mark, the article in the link is the one I have discussed here. I agree that the study is dangerous and must be abandoned. Autistic children must not be treated so carelessly.

Foresam said...

You should know that this study is designed to fail since they are not using Alpha Lipoic Acid, the only thing that will chelate mercury out of the brain.

Did you know that using Lupron eliminates side effects?

It's not just a few thousand people who use chelation. There are almost 8,000 following the advice on the Yahoo group, Autism-Mercury. There is no charge for that, so that nullifies your claims about quack profiteers ripping off parents.

Manuel said...

off topic....

love the new layout and banner....

Sharon said...

FS, I won't enter into discussion with someone who advises the use of chemical castration drugs on children.

Manuel, thanks! My brother says it's cheesy, the cheeky bugger!

laptop battery said...
This comment has been removed by a blog administrator.
Anonymous said...

I've just started on the trail, my grand child was recently diagnosed.
I've received several well-meaning suggestions re: glutathione . I would greatly appreciate comments from folks who have experience in using that for treatment.