Formerly American Board of Chelation Therapy
"Read with great care I do not find the MMWR report misleading. In fact just today the MMWR report was used to help a family avoid a potential catastrophe in a case where an ignorant physician was going to use Na2EDTA on a heavy metal toxic child." ... Looks like some little child dodged a bullet today. Given what we know about the mail order lab tests that the mercury parents use there's a very good chance that it was an autistic child misdiagnosed as "heavy metal toxic" who was nearly killed today by some quack.
It quickly became fairly clear that unless a parent did the amount of reading that I did, or had the conversations with peers and physicians that I did, or had the e-mail conversation with Jim that I did, there would be no way that a parent could make an "informed" decision about their child's participation in this research. If you have the time, and want to understand the reasons for my conclusions, and the 'scientific' answers provided by Jim in his e-mails, you should really read through the e-mails in the previous post. Do the research, follow the links, and keep asking questions. Don't take my conclusions as applicable for all, understand for yourself, and draw your own conclusions.
According to Dr. Newmark, this study was previously rejected by the IRB of Arizona State University.
I contacted the IRB at ASU but did not receive a reply. As I understand it, IRB's are not required to disclose information about rejected research. An IRB's primary function is to ensure the health and welfare of human research participants. There are special FDA considerations for children and vulnerable populations, however the basic role of the IRB is to make sure the research is: legal (complies with informed consent laws and appropriate use of drugs, etc.), ethical (has scientific merit prior to experimentation on human subjects), useful (protocols must meet certain criteria to ensure that the research provides valid results), and last but not least, safe (acceptable risk in terms of potential benefit). So if this research was rejected by ASU's IRB, as Dr. Newmark states, why? I don't think it is likely illegal, as the informed consent docs could be seen by many as sufficient - could it be that ASU's IRB found this research unethical, useless, or unsafe?
Reading here and there on web, one may notice people still scratching their heads about why Dr. Kerry used the drug he did to treat Tariq Nadama. Science blogger, Orac (Respectful Insolence), did an excellent job explaining why there is no right or wrong drug in this case, but there is another bit - Dr. Kerry quite likely used the drug he did, because this is the drug specified in the EDTA chelation "protocol" published by the American College for Advancement in Medicine, a chelation proponent organization. When CDC scientist Mary Jean Brown recently said "No medical professional would ever have intended to give the child Disodium EDTA", she was likely unaware of what's often referred to as the ACAM protocol.
I received an "official" written response from Ric Zaharia, Assitant Director, Arizona Division of Developmental Disabilities. "The Division of Developmental Disabilities is going to undertake a review of its involvement with research which includes its consumers or families. We may need a fuller set of guidelines to direct the support we provide to the wide variety of projects that we are asked to support. We will approach this task with due regard for the rights and well-being of our clients and for the need to advance knowledge about the causes and treatments relevant to developmental disabilities." Although he made no statement about the particular AZ chelation study that had prompted my letter in the first place, or actual current guidelines, I do think the AZ DES/DDD intends to address future research promotion mailings appropriately.
Despite assertions that heavy metal toxicity is a main aspect of autism, questions along the lines of, "although known chelators can remove heavy metals from other body tissues, how can chelation work to affect autism if it can't remove heavy metals from the brain?" are rightfully placed. Good on those people for raising very valid questions and showing some skepticism.
When I read about someone's child who is doing such and such, and they attribute it to pills or chelation, I think, oh yeah, Mulan is doing that. And it's not because of a pill or chelation, it's because of good old-fashioned hard work! There's a short movie that someone at [name removed] suggested I watch. It's about how chelation has supposedly helped their children. It's horrible! I thought that Mulan could easily be on that as well - I have pictures of her freaking of getting her picture taken, and then I could use her kindergarten picture, before hours of therapy and hard work, etc.
Doctors Data, Inc. uses ICP-MS to determine urine mercury levels expressed as a ratio µg/g creatinine. As it happens to be the case, Labcorp (36 locations here in the Phoenix and Tuscon areas, yes, you read that correctly, 36 locations here in the Phoenix and Tucson areas) also provides urine mercury analysis using ICP-MS, and they also provide the ratio expressed as mercury µg/g creatinine. The equipment at Doctor's Data, Inc. is not necessarily "much more sensitive" as being used, but more likely "identical", and I may not be a doctor, but I do know that 1 laboratory in Illinois is not mathematically "more" than several local laboratories here in Arizona. I wonder what would happen to that number of local labs offering ICP-MS urine mercury analysis if I contacted SonoraQuest (another local clinical lab company) or local hospitals too. Incidentally, I saw that Labcorp offers what looks to be a pretty slick clinical research results delivery and integration package as well.
The Greater Phoenix Chapter of the Autism Society of America has apparently put out a pretty slick-looking new website (maybe it's been around for a while, I'm not really sure). The conference section contains a conference scheduled for this coming June at an ASU campus, but the announcement has apparently been revised - readers may recall that I had previously written to ASU president Michael Crow asking that he consider ASU's involvement (by use of facilities) with such a conference (enabling promotion of chelation therapy as an autism treatment).
An e-mail conversation with the lead researcher of the Southwest College of Naturopathic Medicine Chelation Study. Following my last post regarding this chelation study, I sent several e-mails to the researchers and doctors involved. My e-mails ranged from a request for a copy of their experimental protocol, to a simple request for answers to nine questions. Although I received many read receipts, not a single one of my e-mails was responded to.
Assume that you really think (not believe) that conclusive scientific evidence of a Thimerosal-autism link is soon to be published, or is even inevitable. When will chelation research as an "autism treatment" with human subjects be scientifically ethical? A. It's ethical now. B. Not yet, but within 18-24 months. C. Only after both steps 1 and 2 have been completed. D. It will never be scientifically ethical. Please choose the best answer.
It's no secret that there is an ASU professor heavily involved in the autism community here. In the past, he's conducted studies through ASU, but was more recently required to take his work off-campus. I applaud ASU's IRB apparent commitment to responsibility for the protection of human research subjects, in not allowing this so-called research to take place at ASU. Besides relatively absent ethics in the form of scientific merit, it's extremely unlikely that the particular research will find its way to a real peer-reviewed scientific or medical journal anyway. The previous so-called research that led up to it, and will likely be cited by it, was published in a dubious journal. I suspect the current study will go the same route.
A team of researchers is in the process of conducting a study aimed at the effects of treating autistic children with DMSA chelation... (My) questions are not about the people doing the study and they are not about the hypothesized autism cause. The questions raised are about the methodology of the proposed protocol itself. Note: that I have only read what was available on the SCNM website, and it is very possible that there are additional specific details about the protocol which would answer some of my questions below.
From notes on the autismone website, their recent conference in Chicago included a brief presentation/update about [the Arizona chelation] study. I could be wrong about this, but it looks as though this study might be down to 12 participants. If that's true, it doesn't seem like (as I'd seen it so often described) a "large scale" study at all. Will this study fly in the scientific community? Or, is it simply Falling with style?
You know, I'm really burned-out on this whole Southwest College of Naturopathic Medicine's "DMSA Treatment of Children with Autism and Heavy Metal Toxicity" study thing. Although there's a signficant group that does, so many of the local parents apparently don't even seem to care if the science is real or not. Sure the questionable science and apparently absent ethics bothered me greatly, as did the implications of my conclusions about this research. But in thinking back, the thing that had initially irritated me the most, was the fact that the local government-funded agencies charged with protecting our kids (really, look at this link and see what they are responsible for in Arizona), had promoted this - privately funded research.
Dr. Sanford Newmark, a Tucson pediatrician, is the lead physician on both the chelation and vitamin trials. He is conducting physical and nutritional examinations of all the children involved, totaling more than 150 from Tucson and Phoenix, and will monitor their physical health during the trials. About half the autistic children will receive the active chelation drug or vitamins and a control group will receive a placebo. Neither the families nor the researchers will know who is receiving which until the trials are concluded by early next year.
These parents are guilty of nothing more than loving their children and doing everything in their power to ease their children's distress. Autism, even in less extreme cases, can be devastating both for the sufferers and for their families. The doctors offering chelation as an option to these desperate parents, on the other hand, are guilty of far more.
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.
No doubt chelation advocates will cry foul, but it looks as though the autopsy definitely indicates that chelation therapy killed the boy. Given the circumstances of the boy's death, it's pretty obvious that the cause was almost certainly hypocalcemia due to EDTA leading to cardiac arrest. At the time, I was afraid that the autopsy findings might not reflect EDTA as the cause of death, mainly because deaths from sudden cardiac arrest due to acute electrolyte abnormalities don't always produce concrete findings that let the pathologist pin down the exact cause. Such a result would have given the chelationists an "out" to claim that it wasn't the EDTA that killed Tariq. Fortunately, that didn't happen in this case. Too bad the parents are highly unlikely to sue Dr. Roy Kerry, the ENT doctor turned alternative medicine practitioner, because he wouldn't have a prayer of winning a malpractice suit against him. (If doctors in this country can be sued and lose for bad outcomes that aren't their fault, one hopes that someone like Dr. Kerry can be sued for bad outcomes that are his fault.) Maybe a big settlement or a big malpractice judgment against one (or, preferably more) of these autism chelationists would be what it would take to cool their love of this particular ineffective autism therapy somewhat.
Oral chelation therapy product sales.
A five year old autistic boy died on Tuesday while receiving chelation. Think of this boy everytime you upload another video to your site, or write another inflammatory piece of rhetoric, or get your boy-reporter face on TV or persuade some other ignoramus that chelation is totally safe. He wasn't a political tool, he was just a little boy who's only 'crime' was that he was born autistic to a set of parents unable to see the value in that or even just try and meet him halfway.
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.
Last night on WCNC (Channel 6 in Charlotte, North Carolina), the (in)famous Rahid Buttar, D.O. showed that, given enough rope, he would hang himself... In answer to questions of whether he has tested to see if his transdermal DMPS (TD-DMPS) drops are, in fact, absorbed through the skin -- "No, we haven't done that. Why would I waste my time proving something that I already know is working innately?"
Provider of chelation therapy using TD-DMPS, a transdermal lotion that is simply rubbed in after being applied to the skin
Chelation is all the rage in autism circles these days. I recently received a flier for a local autism conference that listed no less than six speakers who would - so the flier promised - extoll the virtues of chelation and describe the wonders it had performed on previously hopeless cases of autism. As a collector of patent medicine bottles and literature, I found the language in this flier to be eerily familiar.
At least Dr. Brown confirmed how Tariq died. He definitely died of hypocalcemia, which is what I've been saying all along. Indeed, a Ca++ level of less than 5 mg/dL is critically low (normal is between 8.5 and 10.2 mg/dL) and will very frequently lead to severe cardiac arrhythmias, with a dangerously high likelihood of progressing to cardiac arrest. Such profound hypocalcemia is a medical emergency. Even when the arrest occurred, the situation could still have been salvaged and the boy saved if proper safety measures had been in place. It's unknown if they were, but at a minimum there should have been a crash cart present fully stocked with all advanced cardiac life support drugs, a defibrillator, and, given the known risks of chelation therapy, calcium gluconate readily available to reverse hypocalcemia. You also need to have personnel trained in pediatric advanced life support on premise to undertake resuscitative action. You don't do a medical procedure that can cause severe hypocalcemia without such basic safety precautions in place.
Just a quick and qualitative look at some of the reasons why I believe that conventional chelators will likely have a difficult time binding mercury ions that are bound within cells. Let's not even get into the difference of binding and lifetime kinetics of the different forms of mercury.
Just some more disjointed thoughts on the chemistry of chelating for mecury in an autistic person.
The Dr Buttars of this world are using it on people most unable to give informed consent: autistic children. The parents of these children often claim that autistics are bad excretors of mercury. If this is true (and I don't know if it is or it isn't) then it seems that using Chelators can actually make the problem worse:
Chelation is a legitimate medical therapy for disorders caused by an excess of certain metals. Copper, iron, mercury, arsenic and lead are all metals that can cause toxicity disorders that are successfully treated by chelation. Since about 1985, when the idea that autism might be caused by mercury poisoning first arose, many practitioners and groups have promoted chelation as a treatment for autism.
A few months ago, Abubakar Tariq Nadama, a 5 year old autistic boy died at the office of Dr Roy Kerry after undergoing IV EDTA chelation therapy. I wrote about it extensively at the time, as did Autism Diva and Orac. At the time, anti-vaxxers, anti-thiomersalers and pro-chelators said we should wait for the results of the report before issuing judgment. However, they failed to extend that same criteria to Dr Rashid Buttar who decided to include EDTA in his new treatment protocol. Dr Buttar is frequently described as a hero amongst the anti-vac's, anti-thiomersal and pro-chelators and yet they seem strangely reluctant to comment on the efficacy and/or safety of his new protocol. I have repeatedly asked commenter's to this site the following question: Given that we don't know the exact role that IV EDTA played in young Tariq's death, on what level is it a good idea for Rashid Buttar to start using it in a new protocol? I have never received an answer to this question. The question has been shirked by at least four separate comments on approximately 6 separate occasions.
Provider of oral chelation therapy.
While it is not illegal for a physician to prescribe chelation therapy for the treatment of Autism, without valid research studies, any treatment that has not been properly researched should be undertaken with a degree of skepticism. Until chelation is approved for use with Autistics and until valid research is conducted, the traditional medical community recommends that it be avoided.
No scientifically controlled studies show that Calcium Disodium EDTA chelation of lead at blood concentrations less than 10 micrograms per deciliter will improve any symptom; several scientifically controlled studies show that chelation of lead at these concentrations does not improve mental or neurological functioning.
Lead chelation therapy -- a chemical treatment to remove lead from the body -- can significantly reduce learning and behavioral problems that result from lead exposure, a Cornell study of young rats finds. However, in a further finding that has implications for the treatment of autistic children, the researchers say that when rats with no lead in their systems were treated with the lead-removing chemical, they showed declines in their learning and behavior that were similar to the rats that were exposed to lead.
This article identifies the major claims made for EDTA chelation and examines each in light of established scientific fact. The sources used for this review included position papers of professional societies, technical textbooks, research and review articles, newspaper articles, patient testimonials, medical records, legal depositions, transcripts of court testimony, privately published books, clinic brochures, and personal correspondence.
Chelation therapy is a series of intravenous infusions containing EDTA and various other substances. It is falsely claimed to be effective against cardiovascular disease, autism, and many other diseases and conditions. Because chelation has valid use in some cases of heavy metal poisoning, many practitioners falsely diagnose lead, mercury, or other heavy metal toxicity to trick patients into undergoing chelation. This Web site explains why doctors who advocate the general use of chelation therapy should be avoided.
Vanessa A. Green, Keenan A. Pituch, Jonathan Itchon,Aram Choi, Mark O'Reilly, Jeff Sigafoos of the Department of Educational Psychology at the University of Texas looked at what treatments those parents (worldwide) who used interventions with their autistic kids actually used. They had 552 usable returns. One of the most fascinating bits of the study was the fact that they asked parents to indicate next to each of the 111 treatments listed what they used now and what they'd used in the past.
This isn't the time for anger or condemnation but I would urge everyone who uses Chelation to please think long and hard about it. Unproven science is frequently deadly science. I'm sure I'll have something more passionate to say on the issue at some point but right now all I can feel is pity for a dead little autistic child.
Before embarking on this 21st Century Gold Rush, I hope that someone will bother to look and see if any autistic children receiving gold for JRA or other autoimmune disorders have reported the same sort of improvement. Lives may be in the balance. Injectible and oral gold are much more toxic - and have the potential for much longer-lasting toxicity - than almost any of the other therapies currently advocated for autism. Let's look before we leap.
Proponents of hair analysis claim that it is useful for evaluating a person's general state of nutrition and health and is valuable in detecting predisposition to disease. They also claim that hair analysis enables a doctor to determine if mineral deficiency, mineral imbalance or heavy metal pollutants in the body may be the cause of a patient's symptoms. These claims are false.
The Cornell study examined the effects of DMSA on pregnant rats, nursing rats and their offspring through 3 months of age. Fischer 344 rats were chosen because their immune systems are well characterized and they have served as the preferred models to identify cancer-causing chemicals. DMSA was found effective in reducing the amount of lead reaching the rat embryos (through the placenta) and in young, nursing rats (through mother's milk). The chelation therapy for rats also reversed several harmful effects of lead exposure, such as altered body weight and spleen weight in rat pups and increased levels of tumor necrosis factor (TNF) and interlukin-4 (IL-4). Elevated levels of TNF and IL-4 are generally regarded as signs of a malfunctioning immune system.
Kerry recklessly used a dangerous IV push of disodium EDTA just because he didn't think Tariq would sit still, and Tariq's heart stopped because it dropped the calcium level in his blood to levels that interfere with the proper electrical activity of the heart. Among the actual charges, it still irritates me, for the same reason that it irritated me when Dr. Mary Jean Brown of the CDC blamed Dr. Kerry for using the "wrong" kind of EDTA, rather than blaming him for using chelation therapy at all for a condition for which it is not indicated and for which there is no evidence of efficacy.
Several years ago it was the measles-mumps-rubella (MMR) vaccine that caused autism. Before that, secretin, a small protein secreted by the intestine, was proposed as a cure; many parents traveled hundreds of miles and spent thousands of dollars for secretin injections. Today, it's the mercury in vaccines. Doctors who play to such fears are not uncommon. The phenomenon of Dr. Kerry isn't new.
In an earlier post I touched on the problems that can arise when urinary metabolites are normalized to creatinine. It's not uncommon for laboratories, mainstream and not-so-mainstream, to report levels of metabolites and toxins as a ratio to creatinine which should be fairly constant for most people. But what happens when a patient has consistently decreased creatinine clearance? Might that cause a false elevation in the target analyte? What happens when an entire population shows an average decrease in urine creatinine levels? Might that give an impression that certain urinary compounds and elements are significantly elevated in one group of patients?
Chelation therapy is generic term for a series of intravenous infusions containing a chelating agent that can bind heavy metals and minerals and cause them to be excreted from the body. Several chelating agents are falsely claimed to be effective against cardiovascular disease, autism, and many other conditions. Many proponents falsely diagnose mercury toxicity caused by absorption of mercury from amalgam fillings.
"If this is snake oil and what they're doing is medicine, then I choose to practice snake oil. And I have no embarrassment with it," said Buttar. "If this was a sham then I'll tell you what. This is the best sham that has ever been put on. I think you'd have to agree with that... Why would I waste my time proving something that I already know is working innately?"
A 5-year-old autistic boy who went into cardiac arrest in his doctor's office died as a result of the controversial chelation therapy he was receiving as a treatment for his autism. The manner of death of Abubakar Tariq Nadama, of Monroeville, has been listed as accidental while the investigation continues. The findings released by the Butler County coroner's office don't say whether the treatment itself is dangerous or the child died from the way the treatment was administered.
Kerry didn't give the "wrong type" of chelating agent. He gave the more dangerous of two very wrong agents, and he gave it in the most dangerous possible way. No form of EDTA should have been used because there was no indication for it. To treat an autistic child with EDTA in the absence of demonstrated indications, based on the claim that autism is caused by "metal toxicity," is without basis in medical knowledge. And there was no evidence, as explained above, that the boy had even a minimally elevated blood lead level or any other "metal toxicity." By not making these distinctions the Pennsylvania Board, however unwittingly, has offered "plausible denial" of responsibility to those who continue to advocate EDTA for dubious indications.
A new ruling that a controversial drug therapy for autistic children was responsible for the death of a 5-year-old Monroeville boy is likely to intensify debates about the treatment's safety and effectiveness. The Butler County Coroner's Office ruled that Abubakar Nadama suffered cardiac arrest because of an injection of EDTA, a chelation therapy drug administered to him in October by Dr. Roy E. Kerry at the Advanced Integrative Medicine Center in Portersville.
Chelating agents, especially those intended for use in children, should be effective in reducing lead and other heavy metals from the body without producing substantial adverse effects on levels of critical serum electrolytes, such as calcium. The only agent recommended for intravenous (IV) chelation therapy for children is CaEDTA. However, hospital formularies usually stock multiple chelation agents. One such agent, Na2EDTA, was formerly used for treatment of hypercalcemia, but its use has become infrequent because of concerns regarding nephrotoxicity and because of the availability of less toxic alternatives. Furthermore, Na2EDTA contains a warning stating, "The use of this drug in any particular patient is recommended only when the severity of the clinical condition justifies the aggressive measures associated with this type of therapy." According to the package insert, Na2EDTA is "indicated in selected patients for the emergency treatment of hypercalcemia and for the control of ventricular arrhythmias associated with digitalis toxicity." According to FDA and CDC, the safety and effectiveness of Na2EDTA in pediatric patients has not been established, and its use is not recommended because it induces hypocalcemia and possibly fatal tetany.
The purpose of this website is to share information regarding DMPS, and to collect information from those who have experienced adverse effects from this drug. In the process I hope not only to inform those individuals who are considering the use of this drug, but to stimulate the appropriate research to determine safe protocols for its use. It is my hope that researchers will want to investigate this collection of patient reports.
The bottom line is that, as is the case for chelation therapy, there is no scientific evidence that IV ozone, either alone or with chelation therapy, does anything therapeutic for autism. It is rather interesting, however, that, with his inclusion of ozone to rid the body of "persistent organics" and the addition of some new "environmental detoxifier," Dr. Buttar is apparently now broadening his approach to more than just mercury. Perhaps he is starting to realize that the mercury mania that has come to the fore this year is without basis and that he needs to expand to eliminating the vague "toxins" alties are so fond of blaming for various diseases. (Certainly he has never presented any scientifically valid "empiric evidence" that his transdermal therapy does anything other than make his patient's skin greasy, anyway.) Given that he seems to be offering this new "protocol" to older children, many of whom have already been on his TD-DMPS, I can't help but speculate that perhaps, just perhaps, TD-DMPS is not all Buttar claims it is, leading him to come up with a "second line" treatment.
Notable for the comments thread.
Provider of oral chelation therapy; product sales.
Dr. Brown said she obtained the child's autopsy report on behalf of the CDC after reading an article about the death in the Pittsburgh Post-Gazette. She said it didn't take long to figure out what had happened. Essentially, Tariq died from low blood calcium. Without enough calcium -- a metal -- in the blood, the heart stops beating. Dr. Brown said the Disodium EDTA the child was given as a chelation agent "acted as a claw that pulled too much calcium" from his blood. "The blood calcium level was below 5 [milligrams]. That's an emergency event," she said.
Perhaps Dateline might serve us better if they took the trouble to inquire into the financial motives of all these bearers of anecdotes. Are any of these activists looking to make money from this issue? Are any of them offering, for money, services, advice, treatments, or literature to the autistic community, vulnerable people desperate for help? Are any of them seeking research grants or expert witness fees? Are any of them involved in or considering litigation against the drug companies, hoping for junk-science verdicts from scientifically naïve judges and juries who have been bombarded with publicity on the issue?
Georgia's licensing database indicates that on 12/23/02, Edelson settled a malpractice suit for $180,000.
The form of Chelation that killed 5 year old autistic Abubakar Tariq Nadama is called EDTA (ethylenediaminetetraacetic acid). It is administered by IV for 'maximum efficiency'. Amongst its other uses apparently is as an industrial chemical to clean scale from pipes in chemical plants and in fact is commonly found in cleaning products due to its ability to bind certain minerals very well. It is not however, very effective in binding to mercury. This makes its choice as a chelator to treat autism -- who's detractors claim is caused by mercury in vaccines -- very peculiar indeed.
Already we have seen chelation apologists like JB Handley try and turn this into a health care issue. He says that this tragedy is the fault of the health care system because they don't conduct trials into chelations effectiveness for autism. This argument is facile. What the US health care system does say regarding chelation is 'don't do it, its unproven and can't be assumed to be safe'. People like Usman/Kerry ignore this advice and go ahead and chelate anyway. A boy dies. JB Handley says: 'See? Its the health care systems fault!'. Pick the logic out of that if you can.
"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."
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.
Regarding DMPS trials in which one patient died.
Regarding irregularities in clinical trials of chelating agents.
There has been a lot of talk about the significance of glutathione in autism and how it might be depleted by mercury exposure. I thought I would attempt to review what we do and do not know about glutathione and autism and how it may relate to mercury toxicity.
The treatment for most heavy metal poisoning is chelation therapy. A chelating agent specific to the metal involved is given either orally, intramuscularly, or intravenously. This process may be lengthy and painful, and typically requires hospitalization... The chelation process can only halt further effects of the poisoning; it cannot reverse neurological damage already sustained.
Just a quick accompaniment to a great article at Autism Street delivering some punishing blows to those who are pushing EDTA chelation therapy for autism despite the amazing health risks involved, risks that have been known and admonished by the government for over 30 years.
The irrational chelators are the parents who are chelating their kid's based on questionable consumer labs using provoked urine samples. They have been manipulated into believing that they must get every last atom of mercury out NOW!, ASAP, or they are bad parents. The truest of the true blue believers will trust a doctor when he tells them that the best hope their child has is to get IV infusions of EDTA or another chelator and IV infustions of ozone. Who wouldn't want their child to have his or her "best hope" in any circumstance. The parents are being played for fools and the kids are the ones who will suffer.
A recent paper caught my eye since it claimed that the use of the chelation agent, DMSA/Succimer, may contribute to cognitive deficits if used in the absence of lead contamination of an animal model. This is a good paper, but I'm just not entirely convinced the the data. Dunno, maybe it's just me. The bottom line is that if one is convinced by their data that succimer treatment can alleviate lead-induced cognitive deficits, then I believe that one has to be convinced by their data that succimer treatment in the absence of lead contamination induces cognitive defects itself - that's a huge and scary statement.
Besides endorsing the use of hydrogen peroxide infusions. Dr. Buttar was said by a parent on the autism-mercury board to be offering IV ozone treatments. Back in November of 2005, Orac discussed Buttar's new treatment protocol and quoted an article that said, "When ozone is introduced into blood, it reacts with water in red cells producing hydrogen peroxide." This treatment is so illogical and so far from "standard of care," that parents really need to be prepared for bad and even fatal outcomes. The parents surely suffer when they see their children harmed outright by quack medicine, but it's the children who really pay the price. The way the legal system is set up and because of the way the family members can feel overwhelmed with guilt for being fooled, the quacks are seldom held to account for their death dealing recklessness.
The NIMH study involves giving a drug designed to lower mercury levels to children, most of whom by definition in the inclusion criteria, will not have evidence of elevated mercury levels and indeed explicitly excludes children who do! (On the other hand, I suppose, I could choose to look at this travesty of a trial as evidence that supports my point that all this increasing aggressiveness by IRBs do not necessarily protect patient safety.) In any case, I can't believe this study in its current form through a well-functioning IRB. Certainly, it never would have passed muster at our IRB, nor would a second NIMH study being started that will subject some autistic children to invasive procedures like lumbar punctures for unclear reasons.
I understand that you sell an autism cure called TD-DPMS (Trans Dermal DPMS). As the parent of an autistic child I'm very curious about this product and how it helps autistics...
Walter J. Stoll, Jr., M.D., practiced family medicine in Kentucky for about 30 years, during much of which he engaged in nonstandard practiuces, including chelation therapy. His Web site lists nine episodes of what he considers "harassment" by the state medical board, which finally revoked his license in 1994. Today he offers "health coaching" by telephone for $2.50 per minute. The 1994 revocation order is reproduced below.
As you can see, the autism-mercury movement is not exactly in touch with reality as we know it. In this one post (authored by a prominent member of the autism-mercury movement), we see the following:  Excusing a person who is clearly profiteering from the parents of autistic children because he is "on our side".  Accepting the unsupported (by anything!) "word" of a man that the cream he makes and sells at exorbitant cost is the only treatment that will cure the mercury poisoning that he diagnoses in children during an $800 consultation.  "It works because I say it works!" - even the author could not explain how they knew that the TD-DMPS was absorbed, other than to say that they tried it on themselves and "knew".
 Discouraging people from discussing treatment failures. Both the "if you gave it less than 18 weeks, that may not have been enough time" and the apt "[d]on't roach other people's buzz" comments encourage the "proper" mindset - if the treatment fails, it's your fault and "we don't want any negative thinking".
This study will examine whether DMSA, an oral chelating agent that removes mercury and other metals from the body, is beneficial for children with autism. DMSA is commonly used to treat autism, although it has never been tested in a controlled study and there is no proof that it helps children with the disorder. Support for its use is based on single-case reports of benefits of chelation with DMSA. This study will help determine whether or not DMSA is useful for treating autism.
A Californian couple is convinced chelation therapy has alleviated the symptoms of their autistic son, who they believe got his autism from mercury in the thimerosal preservative in a vaccine... Why do this child's parents think chelation made him better? Impossible to say, but incorrect initial diagnosis of autism springs to mind. Or maybe they are over-optimistic in reporting improvements. In any case, you can't draw any conclusions from just one story or from anecdotes in general.
A few physicians have been promoting the idea that the mercury content of vaccines is a cause of autism and that autistic children should undergo chelation therapy to be detoxified. Lawsuits have been filed, and several attorneys are advertising on the Internet for more clients.
What could it possibly benefit anyone to refer to unchelated autistic adolescents and adults as "lost"? Professor Haley might find some personal benefit in propagating this inaccurate and disparaging description, in that it might inspire pessimism and fear for the future in parents of autistic children, thereby motivating them to purchase his new chelator. Dan Olmsted might find some personal benefit in further promulgating this inaccurate and disparaging description, in that it heightens the drama of his stories, thereby accentuating his self-appointed role as a revealer of supposedly hidden "truths" about autism. I cannot imagine what kind of benefit this kind of inaccurate and disparaging description might offer to autistic people of any age, or to their parents, no matter what position they might hold with respect to mercury's role in autism causation. Such a description is helpful to no one and injurious or potentially injurious to everyone. It undermines optimism about the potential of children on the autistic spectrum—all of whom can be expected to grow and develop. It implies that a “successful” response to chelation is the only positive outcome that can be envisioned for an autistic child. It dismisses as inherently unworthy of consideration the experience of the great majority of people on the autistic spectrum who have not undergone chelation, or who have undergone chelation and remain autistic.
Hint: he's been known to charge $800 for a consultation, complete with charming promises, and promotes his own $160 an ounce of horrid smelling lotion.
The National Council Against Health Fraud believes that chelation therapy is unethical and should be banned and that chelation therapy of autistic children should be considered child abuse.
Parents approach DAN! practitioners with a false belief about their child's health, seeking treatment for that child. The DAN! practitioner shares their belief and provides the treatment. Parents approach a NIMH doctor with a false belief about their child's health, seeking treatment for that child. The NIMH doctor does not share their belief. In fact they have to establish that the child is not ill. But they still provide the treatment requested by the parent. Who has made a moral decision here; the DAN! practitioner or the NIMH doctor?
By combining DMPS and EDTA, you have two drugs that do the same thing, except that one (EDTA) is both less effective and more toxic than the other. So, the net effect is to significantly increase the risk of injury or death without reaping a corresponding increase in effectiveness.
Background: Chelation therapy has emerged as a popular treatment modality to remove heavy metals, such as mercury, that are
thought to cause autism. This controversial treatment raises concerns about the potential confusion of administering edetate disodium
to children instead of edetate calcium disodium. To the undiscerning, there is no apparent difference between the edetate or
EDTA products. We report a fatality that occurred as a consequence of chelation therapy for autism when the incorrect form of
EDTA was administered. Case Report: A 5-year-old autistic male was undergoing chelation therapy in a physician's office.
While receiving his third treatment he went into cardiac arrest. Resuscitation was initiated in the physician's office and continued
enroute to the emergency department. On arrival in the emergency department the poison center was consulted for information on
“EDTA.” It was unknown at that time which “EDTA” product was administered. The pediatric ACLS protocol was followed
including the administration of a standard IV calcium dose, but resuscitation efforts were unsuccessful. Blood drawn during
resuscitation revealed a calcium level of 6.8 mg/dl following the IV calcium bolus. It was not determined until after the child's
death that he had been given edetate disodium rather than edetate calcium disodium, causing profound hypocalcemia and triggering
the cardiac events that led to his death. Case Discussion: In 1991, the CDC recommended using only edetate calcium disodium,
not edetate disodium to children because edetate disodium may induce tetany and possible hypocalcemia as illustrated in
this case. Conclusion: While the use of chelation therapy in autistic children has not been validated, there is increasing pressure
on physicians to treat pediatric autism with this modality. Therefore, it is imperative that those who chose to utilize this treatment
understand that there are two different EDTA products and the attendant consequences associated with improper use.
Previously well, developmentally normal 20-month-old twin girls presented with weakness, anorexia, a papular rash and increasingly swollen, red and painful hands and feet of 1 month's duration. They had no history of fever, conjunctivitis, lymphadenopathy or oral changes characteristic of Kawasaki disease. The children appeared irritable and unwell and were diaphoretic but afebrile. Both had tachycardia, and one had an elevated blood pressure of 130/90 mm Hg (95th percentile for age 108/62 mm Hg). Both children had reduced muscle power and diminished reflexes. Their palms and soles were erythematous and indurated with desquamation, judged to be acrodynia. Mercury toxicity was suspected, and further questionning revealed that the infants had been given a mercury-containing "teething powder" from India once or twice a week over the 4 preceding months. The girls' blood mercury levels were 176 and 209 (normally < 18) µmol/L. Chelation therapy with 2,3-dimercaptosuccinic acid was administered through nasogastric tubes. Before admission the twins had regressed developmentally and were unable to feed orally, sit or walk. Over the 8 weeks in hospital they showed some minor neurocognitive improvements, but their long-term prognosis is uncertain... The most important step in the management of mercury poisoning is eliminating the source of exposure. The effectiveness of chelation therapy in reversing symptoms is not entirely clear.
...the use of EDTA (ethylenediaminetetraacetic acid), H2O2 and other agents in the clinical setting by delivering the medicine through parenteral or oral routes beyond its FDA approved as effective and low risk without support of the scientific literature contained within the National Library of Medicine, or certainly much more than anecdotal evidence of its effective use in the treatment of a disease or medical condition for which a licensee uses it may be considered to be a violation of T.C.A. 63-6-214 (b) (1), (3) and (4). However, EDTA may be used in the clinical setting when a licensee experienced in clinical investigations has applied for and received from the Board written approval for a carefully controlled clinical investigation of its effectiveness in treating diseases or medical conditions other than those approved by the FDA under a protocol satisfactory to the Board to be conducted in an academic institution.
In his eagerness to promote the theory that biomedical treatments can not only relieve certain physical ailments, and improve the health of autistic people, but can also "cure autism," Dan Olmsted has offered a distorted interpretation of Donald T's story and Dr. Leo Kanner's original articles, and has thereby needlessly contributed to the amplification of rage and distress experienced by parents of autistic children who are convinced that their children have been damaged by vaccines.
Forty claims were selected. The major finding of the review was the absence of documentation to support medical necessity for using edetate calcium disodium (HCPCS code J0600). Inference of heavy metal toxicity was made without appropriate evaluation and documentation of this condition.
Background: The practice of prescribing chelators to autistic children is based on the premise that heavy metals contribute to the
autism phenotype, and that the chronic symptoms of autism can be ameliorated by reducing heavy metal body burden. Methods:
With IRB approval, 17 children with autism and 5 typically developing were tested for chelatable body burden of arsenic (As),
cadmium (Cd), lead (Pb), and mercury (Hg). Children scoring within ranges diagnostic of autism on standardized measures were
eligible for enrollment. Evaluation included a questionnaire regarding potential exposure to heavy metals, diet restrictions, and an
unprovoked 24-hour urine sample collected as baseline. Three doses of the oral chelating agent, DMSA, were dispensed for the
provoked excretion test. The 24-hour provoked urine excretion collection started simultaneously with the first dose, and ended
approximately 8 hours after the third dose. Samples were refrigerated and batch-sent for As, Cd, Pb, and Hg concentrations.
Results: Fifteen autistic and 4 typically developing children completed the study. Based on results of 24-hour DMSA provoked
urine excretion testing, none of the participants excreted toxic quantities of As, Cd, Pb, and Hg. The baseline excretion for all 19
children was either undetectable or within the defined normal range. The DMSA provoked excretion was either undetectable or
within the normal range for 14 of the 15 autistic children, and all four of the typically developing children. A repeat provoked
urine excretion of mercury on the remaining autistic child was within the normal range after removing fish from his diet. Discussion:
The size of this study limits generalizability. However, there has been very little normative data published, to date, on the
body burden of heavy metals in children with autism. Chelation remains a popular alternative mode of treatment for autism
despite risks. Conclusion: Based on the 24-hour DMSA provoked urine excretion results in this study, there is no evidence that
any of the 15 autistic participants would benefit from chelation therapy.
Physicians who treat cardiovascular diseases could significantly increase their income if chelation therapy was a scientifically proven treatment procedure. Many people have atherosclerosis, but only a relatively small percentage develop problems severe enough to require surgery. If chelation were scientifically proven, EDTA could be administered to everyone who had atherosclerosis. Surgery can be done on only one patient at a time. With chelation, the number of patients who can be treated is limited only by the amount of room in the practitioner's office.
Defenders of Rashid Buttar claim that he promotes his own TD DMPS because its safe -- a lot of us think its safe because it doesn't do anything. So why would he switch from a chelator specifically marketed and lauded as 'safe' to one that is associated with the death of a child?
Now let's say we have reason to suspect a given substance is higher in a specific population of people, for instance we might suspect that certain porphyrin related compounds may accumulate in patients with autism and also patients exposed to mercury. If comparable levels are found in both populations one could posit a similar cause. Before we can look for an answer we have to decide how to ask the question. Do we want to know if a) porphyrins are elevated in autistics relative to the general population b) if porphyrin levels are similar in persons exposed to mercury in the work place relative to autistics, or c) all of the above?
A few weeks ago, I described a flier I received at my office advertising a talk at a local extended care facility. Through the flier, the speaker, a local physician who also employs alternative medicine, touted all sorts of wonderful effects that one could enjoy if one tried chelation therapy... This physician even went so far as to characterize chelation therapy as "the most successful method to extend maximum life span."
I hereby call for a complete investigation into the circumstances surrounding the treatment of Abubakar Tariq Nadama by Dr. Roy Kerry. We need to know exactly what was in that IV. We need to know what protocol was being followed. We need to know what other factors were present in the patient's history that might bear on what happened, and whether Dr. Kerry paid enough attention to any such factors. Until we know, however, we're all just talking though our hats.
Because there are no good studies that demonstrate its efficacy in treating autism, chelation therapy for this purpose should be considered at best an experimental therapy (at worst it is a completely ineffective therapy). As such, it is not and cannot be considered the standard of care, and it is generally considered dubious at best and unethical or even malpractice at worst to give experimental therapies outside the context of properly designed and conducted clinical trials.
In February 2005, Sica and the state licensing authorities signed the consent order shown here, under which she agreed to: (a) serve a year of probation, (b) stop using DMPS as a chelating agent, (c) stop using a provoked test to diagnose heavy metal toxicity, (d) use a patient consent form which states that chelation therapy has not been scientifically substantiated, and (e) have her practice monitored by an independent consultant.
Most of the reported adverse reactions to DMPS were allergic in nature that occurred on long-term therapy. Symptoms were generally mild and included itching, nausea, dizziness, fever, weakness, skin reactions (e.g. rash, urticaria) mucous membrane reactions, raised body temperature or shivering and fever. No cases of anaphylactic shock have ever been reported after administration of DMPS. Allergic reactions generally regress after withdrawal of DMPS within 3 to 5 days without any treatment.
Like any prudent parent, I want to see appropriate clinical trials conducted to determine both the efficacy and specific safety of various forms of chelation for treatment of autism in cases in which metal toxicity appears to have played a role. But it is worth noting that Dr. Brown, described by the Post-Gazette as "one of the nation's foremost experts in chelation therapy," obviously believes the relative risk to be the same regardless of whether autism is involved
Dan Olmsted quotes Boyd Haley's callous, gratuitous, unsubstantiated statement, "these older kids are just lost" -- implying that autistic-spectrum adolescents not chelated to remove toxic metals, or for whom chelation has not been beneficial, are beyond hope, incapable of successful maturation... Haley's promotion of chelation to parents of autistic children is fueled with urgency, predictions of doom, and disparagement of autistic individuals "unsaved" by chelation. His "just lost" comment does not contribute to understanding of autism, but provides dramatic effect to the detriment of autistic individuals.
I am greeted with the doleful news that a 5-year-old autistic child has died as the result of being "chelated" for mercury. The death of a child is always a tragedy. What makes this death even worse is the senseless way in which it occurred. I want to say up front that I do not blame the child's parents for his death - they were misled by a doctor who should have known better. Here are just a few of the things that their son's doctor, Dr. Roy Kerry, should have known:
If one takes DMPS orally or intervenously, one is supposed to have very strong smelling urine. If one puts the (very strong smelling) DMPS on the the skin, nothing happens to the smell of that one's urine. Which is actually good news, since the potentially dangerous DMPS is not chelating anything if it is staying on the skin. It's good news for those who are selling it, too, for $170.00 for a month's supply.
When scientists appeal over the heads of their peers directly to a public lacking in scientific expertise there are dangers of manipulation. I have attended conferences at which speakers have addressed parents in scientific jargon so dense as to be incomprehensible. Though the object of this exercise appears to be to demonstrate the intellectual authority of the speaker, it means using science to impress rather than to explain and it often leaves parents bewildered and confused. There is also a danger that scientists whose work is not of adequate quality to satisfy the standards of mainstream academic institutions may be able to secure recognition - and increasingly funding - from parent groups. The danger of abuse is greatest when there are links among scientists, parent groups and commercial interests, providing diagnostic tests, specialised dietary requirements, food supplements and medications. The common feature of all these interventions is that they are inordinately expensive and may constitute a substantial financial burden for some families with autistic children, whose resources are already severely stretched.
Chelation is still "topical", it has a lot of people "talking it up" at the moment and, as a result, will rate higher. As parents experience the inevitable "treatment failures" and see the cycles of the disorder coming around again, they will become disenchanted with chelation and it will gradually fall from favor. If we could go back and see the poll numbers for secretin during its heyday, we would see - I suspect - much the same result. High "effectiveness" numbers when everyone was talking about how secretin was going to "cure" autistic children, followed by a slide from grace as the studies after study showed no effect.
Chelation therapy is a series of intravenous infusions containing EDTA and various other substances. It is falsely claimed to be effective against cardiovascular disease, autism, and many other diseases and conditions. Because chelation has valid use in some cases of heavy metal poisoning, many practitioners falsely diagnose lead, mercury, or other heavy metal toxicity to trick patients into undergoing chelation. The articles linked from this page explain why doctors who advocate the general use of chelation therapy should be avoided.
See folks, thimerosal isn't as demonic as he's been painted to be. And you can see how he comes to be about half mercury by weight, it's because he's one heavy mercury atom and a bunch of other lighter atoms. The medium sized gray balls are carbon atoms, the tiny balls are hydrogen, the yellow ball is sulfur, the red balls are oxygen. The little minus sign next to one of the red balls means that that oxygen atom has an extra electron on it and so it's a negatively charged ion.
Once again, I remain mystified by this altie obsession with the "filth" in their bodies and with "cleansing," "purging," and "purifying." Some of these guys seem more obsessed with their "purity of essence" than General Jack T. Ripper. It goes way beyond a reasonable concern about one's diet and environment and how they can affect one's health. To combat these "toxins" in their blood and liver, to purge the "sewage" from their bowels, they'll flush out their colons, try to flush their livers by fasting and drinking combinations of fruit juice and olive oil, and flush out their blood with chelation therapy and herbs, even at the risk of death. It's more religious than rational.
Opinions expressed by the authors of pages to which this site links do not necessarily reflect this site developer's opinions.
In other words: Sublime or ridiculous? You decide!
Copyright © 2004-2008, Kathleen Seidel. All rights reserved.
This page was last updated on 5 November 2008, 3:48 pm
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