This post was sent to me, as is by someone who wanted to write about this. I was happy to ‘host’ it.
Does the DAN! ‘Protocol’ have more to do with an autistic child’s death than meets the eye? Why does the newly re-designed Autism Research Institue’s (ARI) website still contain a statement about the death of Tariq Nadama, by Bernard Rimland (1928-2006), that appears to be based on old information and doesn’t amount to much more than logical fallacy? Does it matter that two physicians who treated Tariq Nadama are ARI-listed as DAN! practitioners?
The ARI website appears to have recently undergone some serious change. While such change may certainly have some supporters (after all, even Michael Jackson has die-hard supporters), in my opinion, it seems to call attention to the possibility that there are more flaws visible now (links to Generation Rescue), than there were to begin with. Perhaps some of the “less than pretty” parts stand out just a little bit more than they used to. The apparent involvement of DAN! practitioners in the “treatment” of Tariq Nadama, and a mother convinced that her child was “autistic due to immunization shots” is a good example. I actually find it hard to believe that this statement is still up on the ARI website, given what is now known about the story:
A DAN! practitioner (and endorser of ARI’s “Treatment Options for Mercury/Metal Toxicity in Autism and Related Developmental Disabilities: Consensus Position Paper”) apparently referred the Nadamas to Roy Kerry, it doesn’t appear to be the case that Tariq had “been mistakenly been given a ‘look-alike’ drug” since Roy Kerry’s apparently prescribed the use of IV disodium EDTA, ENDRATEand Roy Kerry apparently became a "DAN! " after the death of Tariq Nadama.
August 29, 2005
(updated March, 2006)
The Safety and Efficacy of Chelation Therapy in Autism
Statement by Bernard Rimland, Ph.D., Director, Autism Research Institute regarding death on August 23, 2005 of 5 year-old Tariq Nadama Of Pittsburgh, who was given intravenous EDTA chelation I have received many media calls regarding the above, very unfortunate matter.Although the autopsy conducted immediately after Tariq’s death was inconclusive, the medical community and the press quickly leaped to the (incorrect) conclusion that Tariq’s death was due to chelation therapy. A later formal report by Mary Jean Brown of the Centers for Disease Control and Prevention concluded that Tariq’s death was not caused by properly administered chelation, but was instead a result of a drug error. He had mistakenly been given a ‘look-alike’ drug, Disodium EDTA, instead of Calcium Disodium EDTA.Here is some additional information about chelation:
1. Chelation is not used to treat autism, but rather to treat heavy metal overload (lead, mercury, cadmium, etc), which is a major cause of autism and retardation.
2. Tens of thousands of children and hundreds of thousands of adults have been treated safely with chelation therapy for many decades.
3. The child’s mother, Marwa Nadama, said that her son showed such remarkable improvement after the first few chelation treatments that if she had a choice, she would choose chelation again.
4. Conventional physicians, who have been critical of chelation, routinely use drugs such as Risperdal and Clonidine in treating autism. Death is a known side-effect of such drugs (read the labels!). Such deaths get no media attention. In 2005 the Food and Drug Administration reviewed the research literature on Risperdal in autistic individuals. They decided not to approve Risperdal because of the number of deaths associated with it. Despite this deadly “side-effect” of Risperdal, it continues to be the most frequently prescribed drug for autistic individuals.
5. Most autistic children who are chelated are chelated orally or transdermally (by gel, through the skin), as suggested in our Defeat Autism Now! (DAN!®) document available at our website http://www.autism.com.
6. Thousands of parents of autistic children, treated safely with chelation, report, like Tariq Nadama’s mother, that their children have shown remarkable improvement after chelation was initiated. Formal data collection is just getting underway, but the initial data, on several hundred children is very encouraging:
7. Since 1967 The Autism Research Institute has collected “Parent Ratings of Behavioral Effects of Biomedical Interventions.” To date, over 24,500 parent responses have been collected. Chelation is a recent addition to our list of interventions. So far, of the first 470 parents who reported on the efficacy of chelation, 75% report “good” results, which is by far the highest “good” percentage reported for any of the 88 biomedical interventions (including 53 drugs) the parents have rated. See: http://www.autismwebsite.com/ari/treatment/form34q.htm.
See related article titled “Chelation: The story behind the headlines”
Okay, now that it’s refreshed in your memories, let’s take a much closer look at this statement.
Although the autopsy conducted immediately after Tariq’s death was inconclusive, the medical community and the press quickly leaped to the (incorrect) conclusion that Tariq’s death was due to chelation therapy. A later formal report by Mary Jean Brown of the Centers for Disease Control and Prevention concluded that Tariq’s death was not caused by properly administered chelation, but was instead a result of a drug error. He had mistakenly been given a ‘look-alike’ drug, Disodium EDTA, instead of Calcium Disodium EDTA.
What the ARI website doesn’t tell you, is that the Order To Show Cause by The Commonwealth of Pennsylvania Bureau of Professional and Occupational Affairs before the Pennsylvania State Board Of Medicine (the complaint against Dr. Roy Kerry, the Pennsylvania doctor who prescribed the chelation therapy drug that resulted in the death of Tariq Nadama), leaves very little question about what apparently really happened:
“69. Respondent spoke to Professional Conduct Investigator of the Bureau of Enforcement and Investigator concerning his treatment of Tariq.”
“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 Disodium 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.”
Mary Jean Brown’s statement to the press was apparently made in January of 2006. The Order To Show Cause was not made public until September of 2006, so it’s understandable that ARI’s statement from March of 2006 does not reflect this new information. Isn’t it time for ARI to update their statement?
Here is some additional information about chelation:
1. Chelation is not used to treat autism, but rather to treat heavy metal overload (lead, mercury, cadmium, etc), which is a major cause of autism and retardation.
Okay, so this is probably a statement of belief on the part of Bernard Rimland. I am not aware of any science supports the notion that heavy metals are “a major cause of autism” let alone that autistic children in general are “overloaded” with such metals. Why not just leave the explanation at, “Chelation is sometimes used to treat heavy metal toxicity”, or re-phrase it as a clear statement of belief? It also seems clear from the Order To Show Cause that there doesn’t appear to be any evidence that Tariq was “overloaded” with heavy metals.
“44. Respondent obtained a “post provocative” urine sample from Tariq on July 22, 2005.”
“45. A “post provocative” sample is a urine sample taken after the patient has been subject to drug therapy or chelation.”
“46. The laboratory report of this sample was completed on July 29, 2005 and sent to Respondent.”
“47. This laboratory report listed Tariq’s lead level as “elevated” but not in the “very elevated” reference range.”
“48. It should be noted that this laboratory report has a notation in bold print that reads “Reference ranges are representative of a healthy population under non-challenge or non¬provoked conditions.””
“49. Tariq had a minimal elevation of his lead level.”
2. Tens of thousands of children and hundreds of thousands of adults have been treated safely with chelation therapy for many decades.
Apparently, death is not as uncommon as ARI’s website might have readers believe, but aside from that, an appeal to the number of people treated with chelation therapy says absolutely nothing about the appropriateness (or major lack thereof) of chelation therapy for autism. While Rimland’s statement is clear that chelation is used to treat heavy metal toxicity, it seems pretty obvious from the Order To Show Cause that this probably was not the case given the lab results discussed and apparent desire on the part of the mother for the procedure.
16. The current complaint notation reads “wants to have iv … edta injection … an iv push. mother states Tariq is autistic due to immunization shots he was a normal pregnancy .. 1st shots were given the day he was born … no sx noted until age 18 mo … has had 12 other inoculation by time he was 18 mo old/…”
3. The child’s mother, Marwa Nadama, said that her son showed such remarkable improvement after the first few chelation treatments that if she had a choice, she would choose chelation again.
Hmm. Apparently it was the third treatment that killed Tariq, so to say he showed remarkable improvement after the first “few” chelation treatments would seem rather difficult. I suppose it’s possible that she may have been referring to other previous chelation attempts which may fall under the:
“has not been responding 10 other types of therapies and therefore she is recommending EDTA” described in the Order To Show Cause, but that doesn’t make sense that she would view them as having been responsible for “remarkable improvement”. I guess we’ll just have to chalk this one up to “appeal to testimonial”.
4. Conventional physicians, who have been critical of chelation, routinely use drugs such as Risperdal and Clonidine in treating autism. Death is a known side-effect of such drugs (read the labels!). Such deaths get no media attention. In 2005 the Food and Drug Administration reviewed the research literature on Risperdal in autistic individuals. They decided not to approve Risperdal because of the number of deaths associated with it. Despite this deadly “side-effect” of Risperdal, it continues to be the most frequently prescribed drug for autistic individuals.
Tu Quoque! Two “wrongs” do not make a “right”. Risperdal is irrelevant to the safety or efficacy of chelation.
5. Most autistic children who are chelated are chelated orally or transdermally (by gel, through the skin), as suggested in our Defeat Autism Now! (DAN!) document available at our website http://www.autism.com.
Ah the good old appeal to popularity. Are readers to assume that because most autistic children who are chelated are chelated orally or transdermally, that it acutally does anything for autism itself, or that chelation is safe? Are readers to assume that because this is what’s popular, that the (DAN!®) document available at their website http://www.autism.com will appropriately caution about IV EDTA chelation? The (DAN!®) document discusses three common chelators. It does mention IV adminstration of “many different agents”, but it doesn’t appear to mention, exclude, or warn about EDTA by name at all.
_”There are many different agents for detoxification of metals, and some agents can be administered in different ways (IV, oral, rectal suppository, transdermal). The three major ones we will discuss include DMSA, DMPS, and TTFD. “_
It should be tempting to think that a document devoted to chelation, and endorsed by thrity-three professionals, would exclude EDTA. After all, the name “EDTA” is not specific to either of the two types of EDTA (Endrate or Versenate), and it’s use is notably cautioned by its own package insert.
6. Thousands of parents of autistic children, treated safely with chelation, report, like Tariq Nadama’s mother, that their children have shown remarkable improvement after chelation was initiated. Formal data collection is just getting underway, but the initial data, on several hundred children is very encouraging:
I don’t expect that this is any kind of data that would be peer-reviewed and published in mainstream scientific literature, but I suppose I could be wrong.
7. Since 1967 The Autism Research Institute has collected “Parent Ratings of Behavioral Effects of Biomedical Interventions.” To date, over 24,500 parent responses have been collected. Chelation is a recent addition to our list of interventions. So far, of the first 470 parents who reported on the efficacy of chelation, 75% report “good” results, which is by far the highest “good” percentage reported for any of the 88 biomedical interventions (including 53 drugs) the parents have rated. See: http://www.autismwebsite.com/ari/treatment/form34q.htm.
See related article titled “Chelation: The story behind the headlines”
Parent Ratings? Please read what Prometheus had to say about this. But what’s one to make of “88 Biomedical interventions (including 53 drugs)!? Fifty-three? Holy experimentation Batman!
Let’s recap.
1) According to documents from Roy Kerry’s office, Tariq’s mother apparently came to believe her autistic child is autistic “due to immunization shots”.
2) Somewhere along the way, the parents seek treatment from DAN! practitioner, and endorser of the DAN!® “Treatment Options for Mercury/Metal Toxicity” document, Anju Usman.
3) While under the care (or prior to being under the care) of DAN! practitioner Anju Usman, some 10 odd therapies apparently fail to produce desired results. (This may or may not have included oral and or transdermal chelation as well).
4) The DAN! document makes no warning about IV EDTA. In fact, DAN! practitioner Anju Usman apparently refers Nadama family to Dr. Roy Kerry for IV EDTA chelation (she may have actually been the physician who recommended CaNa2EDTA – line 43 of the Order To Show Cause).
5) Roy Kerry (not a DAN! practitioner at the time according to Bernard Rimland), is the physician who prescribed Endrate.
6) Tariq Nadama is dead.
7) Roy Kerry is now listed as a DAN! practitioner.
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