Chelation Study Put on Hold
A study on chelation, a controversial biomedical treatment for autism, has been put on hold, today’s Associated Press reports. Chelation, in which heavy metals are removed from the body, is based on the notion that mercury in vaccines can be linked to autism; an autistic boy, Abubakar Tariq Nadama, died in 2005 after receiving chelation treatment at the office of Dr. Roy Kerry in Pennsylvania. The chelation study was to be funded by the federal government and has been put on hold due to safety concerns, according to Dr. Thomas Insel, the director of the National Institute of Mental Health. The Associated Press quotes Dr. Insel as saying:
“So many moms have said, `It’s saved my kids.’”
The Associated Press describes one 8-year-old autistic boy, Charlie, who received chelation. According to his mother, Christina Blakey, treatment helped him to stop having tantrums and to develop certain social skills—looking at her, waving, lining up with other children, walking into school on his own.
There is no way to prove whether chelation made a difference or whether Charlie simply adjusted to the school routine.
as the Associated Press comments; perhaps school and educational treatments might also have played a part?
Dr. Martin Myers, former director of the federal National Vaccine Program Office and co-author of Do Vaccines Cause That? believes that chelation is “unethical” and thinks that it is “‘incumbent on the scientific community to evaluate it’” as many parents (I know more than a few) are using chelation without scientific evidence. Celebrity Jenny McCarthy has announced that she plans to try chelating her autistic son, Evan, this summer—-this won’t be the last time we hear about chelation, however much or little it is studied.
Tags: asd, asperger, autism, autism blog, chelation, disabilities blog, disability, Family, family blog, government funding, mental health, mercury, Parenting, pdd-nos, thomas insel, Treatment
29 opinions for Chelation Study Put on Hold
H6
Jul 8, 2008 at 10:14 pm
Before anyone considers chelation, they may want to check out the work that a company called Carantech Biosciences, Inc. is doing. They seem to have a potential animal model in the works for autism (and other medical problems) using viruses. They also seem to be working on treatments based on that model.
They may have a whole new paradigm for autism that could suggest a surprising direction for research.
I think a number of scientifically-minded people who read this blog will find the very detailed patent for the animal model to be quite interesting. The patent is at:
http://www.freepatentsonline.com/y2006/0130161.html
Karin
Jul 8, 2008 at 10:44 pm
hmmmm, once again Jenny seems to have trouble keeping her stories straight. I thought she was saying that her son was ‘cured?’ If so, why would he need chelation?
Angela
Jul 8, 2008 at 10:57 pm
Karin.. you beat me to the punch. I was thinking the same thing.
Regan
Jul 8, 2008 at 11:23 pm
Ditto.
Kristina Chew, PhD
Jul 8, 2008 at 11:37 pm
I don’t know, H6. Chelating seems to have become a sort of commonplace procedure for one family we know; their child has been undergoing chelation for some years. Last time they visited us he didn’t look too healthy (if I may say so) and kept asking to be carried and saying he was tired (he’d just been to see a certain DAN! practitioner).
Guess there’s more facts that need to be straightened out, in Jenny’s case.
Regan
Jul 8, 2008 at 11:38 pm
There is one reason that I think that they should do the study–the example of secretin, which was the heyday miracle treatment when Eleanor was little.
I understand the ethical conundrum, and I can imagine that controlling for confounds wouldn’t be easy, but without a good study the question will not be resolved and will undoubtedly continue in the status quo.
Dana Commandatore
Jul 9, 2008 at 12:06 am
is ditto again just redundant?
Emily
Jul 9, 2008 at 12:09 am
How about “tritto.”
HCN
Jul 9, 2008 at 1:17 am
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?
farmwifetwo
Jul 9, 2008 at 8:30 am
Ditto :)
And when asked my Ped said “NO!!!” And YES, he has done chelation in hospital on children with both mercury and lead poisoning.
He told me to go and read up on “Pink’s Disease” which is mercury poisoning.
Chelation is dangerous and IMO should be only used when necessary, in hospital, not as a “just b/c” treatment.
S.
Liz Ditz
Jul 9, 2008 at 10:53 am
Steve Novella:
http://www.sciencebasedmedicine.org/?p=164
“I am with those who say that this research is highly unethical. It is being promoted by a fringe movement that has a history of anti-scientific attitudes. There is no reason to believe that the results of the research will settle anything, and it is very unlikely to be truly positive given what we know about autism. Doing this type of research in the hopes of convincing the ideologues is a fool’s notion. Don’t say I didn’t tell you so.”
Orac:
http://scienceblogs.com/insolence/2008/07/medical_ethics_children_and_chelation.php
“An unethical experiment in voodoo medicine indeed.
I realize that one rationale of the trial is that, if no difference were found between the DMSA group and the placebo group, such a result would “would counteract ‘anecdotal reports and widespread belief’ that chelation works,” which is what, indeed, the study outline asserts. Whoever wrote the study outline is charmingly naive. She clearly doesn’t know antivaccinationists very well. A negative trial would not in the least deter the mercury militia. Antivaccinationists would just say that it was the wrong drug, the wrong dose, or that the therapy wasn’t continued long enough.Then they’d demand another study. If that study were negative, they’d find reasons to discount it, too and demand another one. The ability of antivaccinationists to shift the goalposts is well nigh infinite, as David Kirby’s goalpost-shifting has demonstrated. No matter how many studies showed that chelation does not help autistic children, they’d still demand just one more.
And, if this article is any indication, the clueless and hapless Dr. Insel would give it to them, too, no matter how unethical.”
Kev Leitch:
http://leftbrainrightbrain.co.uk/?p=922
“Lets be clear. This study is being touted about for one reason and one reason only – to appease the anti-vaccine/autism groups. In the mainstream medical/scientific community (and notably in the toxicology community) it is well known that autistic kids aren’t toxic.”
[snip]
There is no reason to chelate autistic children .”
Doing the study is pandering to politically-connected parents who are hysterically insisting that heavy-metal-poisoning = autism, despite all the evidence to the contrary.
Sarah
Jul 9, 2008 at 1:38 pm
Completely agreed on the whole Jenny thing. Why is no one in the media calling her out on the inconsistent story?
Regan
Jul 9, 2008 at 2:09 pm
It seems that the assessment is that should the outcome of a controlled study be negative, that would not dissuade those who already believe.
That said, those who already believe or will be ready to persuade others are out there today chelating under varying conditions of control without exercising similar ethical concerns for immediate or long-term side effects. My observation was that Secretin was in a similar situation and quickly fizzled out when the results of the clinical trials became widely known. However I also recognize that there has been a lot of goalpost shifting, and in this case it might just shift to another chelator or some other procedure.
So that leads to a question–then on what basis can such practices be investigated and regulated?
Indignation about this particular study is one thing, and that has been suspended, but that’s not exactly the same thing as regulation of the bigger picture.
Newsweek Article Highlights Chelation Study - Mutterings Of A Mindless Mommy
Jul 9, 2008 at 4:13 pm
[…] of curing vs. diversity as well as the efficacy of chelation, let’s look at the safety of it. Kristina Chew, the Autism Vox, is one of the best autism bloggers in my not so humble opinion. In November of […]
Angela
Jul 9, 2008 at 4:24 pm
“Before he started chelation at age 5, Charlie suffered tantrums. When she took him to school, she had to peel him off her body and walk away. But three weeks after he began chelation, his behavior changed, she said.
“He lined up with his friends at school. He looked at me and waved and gave me a thumbs-up sign and walked into school,” Blakey said. “All the moms who had been watching burst into tears. All of us did.”
Chelation or adjusting to being in school for the first time? Sounds like a pretty normal thing to me—first time in Kindergarten and 3 weeks later has adjusted.
Sarah Cook
Jul 9, 2008 at 7:23 pm
Why is this boy, Abubakar Tariq Nadama, brought up again and again? He was given the wrong drug! It was a medical mistake like those that happen all the time! His death was not caused by chelation.
Barbara Maguire, 51, died after being given medicine prescribed to a patient who had previously occupied the bed she was allocated. She was being treated for stomach pain. So was she killed by treatment for stomach pain?
Kristina Chew, PhD
Jul 9, 2008 at 8:45 pm
@Sarah Cook,
Ahubakar Tariq Nadama was given disodium EDTA, which (according to Dr. Kenneth Bock’s book) is FDA-approved for “certain conditions, including hypercalcemia and digitalis toxicity.” Dr. Bock also notes that “as a general rule, disodium EDTA should not be administered to children” (Dr. Bock does not administer it to children in his practice in Rhinebeck, NY). He also writes that (in the case of Nadama) the procedure used to administer the disodium EDTA may have been incorrect. A “relatively fast intravenous drip” was used instead of a “slow intravenous drip.” (Quotations are taken from p. 309 of Dr. Bock’s book.)
Dr Bock also notes that disodium EDTA is the medication “we are currently using in the large NIH study that is evaluating chelation therapy for cardiovascular disease.” He also writes that “the slow IV drip” is being used in the NIH study on chelation therapy—-this being the aforementioned study in the original post above.
Kristina Chew, PhD
Jul 9, 2008 at 9:47 pm
Orac also notes that that chelation/cardiovascular disease study is on the fringe, too.
Sullivan
Jul 10, 2008 at 11:51 am
Why is Tariq brought up again and again?
Because chelation in any form as a treatment for autism is wrong. It is also wrong as a treatment for “heavy metal toxicity” when that diagnosis is based on shoddy lab reports. Challenge urine tests are just plain wrong.
He should never have been chelated. He shouldn’t have been put in a situation where any chelator was applied.
Had this misinformation about autism and mercury not been presented as fact, Tariq Nadama could very well be alive today.
The second part of your statement, Sarah, is very strange. That woman was killed because she was given treatment for something other than her own medical condition. Tariq Nadama was killed because he was being treated for heavy metal toxicity when he had autism. So, yes, there is a similarity there.
The “mistake” that killed Tariq was the concept that autism is caused by mercury. This was compounded by the mistake made by his (now DAN!?) doctor. But, that second part doesn’t take away from the first: Tariq shouldn’t have been there in the first place.
HCN
Jul 10, 2008 at 12:54 pm
Sarah Cook said “He was given the wrong drug! It was a medical mistake like those that happen all the time! His death was not caused by chelation. ”
He was killed for no good reason while undergoing chelation! Plus the “wrong drug” bit pales when it was revealed that Kerry did not even stock anything else. From the complaint, http://www.casewatch.org/board/med/kerry/complaint.shtml …
“70. Respondent admitted that EDTA is very rare to use on children”.
71. Respondent admitted to using Disodium EDTA to chelate Tariq.
72. Respondent stated to Investigator Reiser that Disodiun EDTA is the only formula of EDTA he stocks in his office.
73. Respondent admitted that CaNa2EDTA is available but that he has never used this agent.
74. Respondent admits that he used the TV push because he did not believe that Tariq would be able to remain still and tolerate the one and 1/2 hours it takes to have the IV drip complete and therefore he administered the drug via IV push. ”
………………………
What is even worse, after the gross incompetence of this man (especially when treating a child) he was able to become a “DAN!” doctor!
Sarah Cook
Jul 10, 2008 at 1:10 pm
I would like to step back and clarify that I do not believe that EDTA , inter venous chelation is safe and I would not let it be administered to my child. I would not let EDTA be given to my child in any form for chelation.
Parents all over the world are giving chelation to their Autistic(Mercury poisoned) children and all the anti-curers can point to is one child’s very unfortunate death.
My point about the 51 year old woman being give n the wrong medication is that medical mistakes happen every day in hospitals, in fact The November 1999 report of the Institute of Medicine found that up to 98,000 people die in hospitals each year as the result of medical errors.
I really doubt if you would condemn every treatment associated with a medical mistake or a doctor with bad judgment.
Oh and by the way, according to autism.com, a survey fof 803 parents that tried chelation with their children 74% showed improvement.
http://www.autism.com/treatable/form34qr.htm
Sarah Cook
Jul 10, 2008 at 1:15 pm
Just wanted to add that using DMSA for removing mercury has been done without any negative incidents that I can find, since the 50’s.
Regan
Jul 10, 2008 at 1:32 pm
DMSA chelation in some studies on children have reported side effects of neutropenia, alanine transferase suppression, vomiting, diarrhea, and in one study, reduction of executive functioning relative to controls. This was not across the board.
People reporting improvement using anything doesn’t surprise me. The human tendency is to both see improvement using any change intended to improve and to sometimes attribute change to that not responsible. That’s the reason that studies using double blind placebo and preferably objective measures by non-involved observers are used to control for unintentional bias.
Sarah Cook
Jul 10, 2008 at 1:48 pm
Most drugs have side effects. I had to put my child on the antibiotic for an ear infection. The list of possible side effects were very scary. This is one of the most prescribed drugs to children.
Using the logic that “the human tendency is to see improvement” fails to explain why all the other drugs, supplements and diets on the survey didn’t show the same positive results.
I really hate to sound like an argumentative person. This is a very serious subject and should be based on facts not bias.
HCN
Jul 10, 2008 at 6:37 pm
Still, there is a risk. This is why that for lead poisoning the level of lead in the blood has to be a certain minimum to risk using DMSA (and even more to risk EDTA).
Also studies of the stuff for lead poisoning show that chelation does not repair neuro damage:
pediatrics.aappublications.org/cgi/content/full/114/1/19
“Results. Chelation therapy with succimer lowered average blood lead levels for ~6 months but resulted in no benefit in cognitive, behavioral, and neuromotor endpoints.
Conclusion. These new follow-up data confirm our previous finding that the TLC regimen of chelation therapy is not associated with neurodevelopmental benefits in children with blood lead levels between 20 and 44 µg/dL (0.96–2.17 µmol/L). These results emphasize the importance of taking environmental measures to prevent exposure to lead. Chelation therapy with succimer cannot be recommended for children with blood lead levels between 20 and 44 µg/dL (0.96–2.12 µmol/L).”
and:
w w w .pubmedcentral.nih.gov/picrender.fcgi?artid=1241834&blobtype=pdf
“Although succimer lowers blood lead in moderately lead-poisoned children, it does not have a beneficial effect on growth and may have an adverse effect.”
Kristina Chew, PhD
Jul 10, 2008 at 7:54 pm
There’s no scientific basis for chelating autistic children, not for “autism” specifically.
Reports about the effects of chelation tend not to note what other therapies (such as educational programs) that a child is in, and that might also be helping the child. (Would be glad to read reports that do; am looking.)
Pressure to Study Chelation?
Jul 16, 2008 at 12:07 am
[…] the July 14th Nature is an article about the NIMH chelation study that was put on hold due to safety concerns. NIMH director, Thomas Insel, M.D., says that, due to […]
Regan
Jul 28, 2008 at 1:37 pm
If you get Science, there’s a good article.
Science 18 July 2008:
Vol. 321. no. 5887, p. 326
DOI: 10.1126/science.321.5887.326
News of the Week
MEDICINE:
“Stalled Trial for Autism Highlights Dilemma of Alternative Treatments”
Erik Stokstad
Regan
Jul 28, 2008 at 1:52 pm
The full text of the Science article
The referred to paper that ostensibly halted the trial,
Stangle, D.E., Smith, D.R, Beaudin, S.A., Strawderman, M.S., Levitsky, D.A., & Strupp, B.J. (2007). Succimer Chelation Improves Learning, Attention, and Arousal Regulation in Lead-Exposed Rats but Produces Lasting Cognitive Impairment in the Absence of Lead Exposure. Environmental Health Perspective, 115, no. 2, February 2007
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