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.
Today, the coroners report has come in:
In layman’s terms, the administration of ethylene diamine tetra-acetate, commonly known as chelation, resulted in a lack of oxygen to the brain as well as irreversible heart damage, said Allegheny County Deputy Coroner Ed Strimlan.
We determined there’s a direct correlation between the EDTA and the lack of oxygen to the brain and the heart muscle damage. It’s a total package, based on the autopsy, the histology [tissue sampling] and the toxicology [blood sampling],” Mr. Strimlan said.
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.
Now, of course, we _do_ know that EDTA has ‘a direct correlation’ to the lack of oxygen and heart muscle damage that poor Tariq sustained and which killed him. And still no one is prepared to stand up from the pro-chelationist side and state they think Buttar is being (once again) dangerously irresponsible. He (Buttar) has a reputation as a forceful man – a bit like a bull in a china shop. As we know from recent experience from another man with a similar reputation – such people seldom stop to look before they leap. So convinced they are in their own ‘rightness’ they they plough ahead without pause or consideration.
Now we know for sure that Chelation did play a role in a young boys death – a boy who’s dead _solely because he was autistic_ – I invite commenter’s from an anti-vax, anti-thiomersal, pro-chelation perspective to call for investigations into Dr Roy Kerry under who’s treatment Tariq died and to call for Rashid Buttar to exercise more care.
Speaking of ‘more care’ and ‘looking before one leaps’, yet another anti-thiomersal activist, Dan Olmsted, recently wrote a column lauding Gold salts as a potential chelator of mercury. It seemed he was inundated with emails from scientists expressing grave concern. So much so that he wrote an obviously unplanned and somewhat panicky reaction piece which included the line:
Clearly, given the serious risks, figuring this out is a job best left to the experts.
What a stunning piece of ‘shutting the barn door after horse has bolted’ syndrome. You’re absolutely right Mr Olmsted, this _is_ a case best left to experts. And yet you didn’t let that stop you in any of your previous pieces. Lets hope that no one read your first piece without reading your second one. Lets hope they didn’t go out and pump their kids full of Gold salts and lets hope that no one gets hurt.
Roy Kerry, Rashid Buttar, Dan Olmsted – next time , look before you leap.
Left Brain Right Brain 
Trip: You know, if the “medical establishment” (lovely term, too bad it has some false premises hidden in it) won’t allow her to test her son for mercury etc…
… won’t she find out when she goes to the hospital and asks? I mean, you hardly need to try to scare her away from doing something she can’t do… and it’s not like they’ll charge her much money to tell her she can’t do it, either. Or are you afraid of something else…?
Oh, and as for proving Doctor’s Data is biased? I already used an argument that’s more solid than your “proof” that the “medical establishment” is biased.
But if you want me to walk you through it…
Doctor’s Data is a company. Therefore, they want to make a profit.
Doctor’s Data makes more money if they tell you your child has a mercury/lead/zinc/whatever problem, because then you’re going to have to get more tests from them.
Therefore, Doctor’s Data wants to tell everyone they have a problem, even if they don’t.
You follow the logic, Trip?
HN wrote:
“The VAERS data is just input data that has not been evaluated. When the data is evaluated it turns out MOST of the time that there is no basis to blame vaccines”.
-That is what they want you to think but any person with a brain cell left can see that that is a complete lie. Here are some examples of the babies who died in 1990 when the CDC said that they found only 1 death possibly associated with a vaccine reaction. Let’s see, child vaccinated with DTP/OPV:
6 died within 24 hrs. of vaccination
4 died within 2 days
1 died 3 days later
1 died 4 days later
-For clarification, because I don’t have much time here this morning… let’s just say that I basically just clicked on a few of the listings on VAERS. You are going to tell me “they” only attribute 1 to a vaccine reaction (possibly)? Please. Again, it shows the pattern of denial going on in the CDC. Sorry.
HN wrote:
“When someone decides that John Scudamore’s whale.to site is more reliable than the CDC there is nothing to say. Nothing at all.”
-Earth to HN, whaleto.com took this information directly from the VAERS system so that won’t work here. Sorry, again. Nice try. Of course, you also need to remember that the VAERS system is only as good as the information that goes into it. I’m quite sure that there are hundreds of other “SIDS” deaths which were not reported on VAERS because doctors tell the parents that it isn’t a factor. Yeah, right…
For anyone who cares. Here’s a prediction. Mark my words. The Prevnar vaccine (coded PNC on VAERS) will be taken off the market at some point (hopefully very soon). That vaccine introduced in 2000/2001 is killing babies left and right. Crying shame. Pretty pathetic that a mom can take a look at the VAERS data and figure that out. Actually, not pathetic, it is FRIGHTENING!
-Sue M.
Jonathan wrote:
“How did you learn about this one Sue? You have clearly retained it from somewhere”?
-Yes, I have retained it from somewhere… HERE! You guys use these terms repeatedly… It is insanely boring. Sorry to offend. Jonathan, if I had known this was your list (again, didn’t read much of it), I would have been less “harsh”. I know that you are a young student who obviously has time to put into these fallacies, etc. I just don’t…
-Sue M.
Jenny,
The diet can help some kids if they are sensitive to certain foods. It is an easy and safe enough intervention to try and you can eliminate and re-introduce foods and try to gauge response. My advice is to look for clear signs of response and move on if you don’t see any.
The test that kevin7kevin refers to, secretory IgA, is useless in predicting a non antibody immune reaction. Many parents implement the diet before or in conjunction with other “biomed” interventions so it is difficult to know which is helping. Many children will feel better and be more comfortable if they are sensitive to certain foods when those foods are restricted or eliminated.
No matter what you read, the diet can help some children which is probably why so many DAN! doctors recommend it first. It makes the other stuff look good. You may see good things with changes in diet, or you may not, but don’t expect a cure. 7kevin7 has experience, we all have some experience, and his experience may even be helpful to someone. Keep in mind that he is very new to this, he has a very young autistic child, and his experience and observations are limited. Not that his advice is worthless but he is trying to convince himself while he convinces others.
I’ve found the people with the real experience and true wisdom are the parents of older children and autistic adults. Parents with younger children prefer to listen to tales of hope and full recovery. That’s only natural but they are overlooking the greatest resource available to them. Unfortunately the voice of experience is often drowned out by the shouts of fanaticism. Use your judgment, don’t be afraid to ask lots of questions, and don’t follow people who insist they have all of the answers or greater experience.
Oh, and don’t give 777 your number, 8675-309 😉
Clone wrote:
“I’ve found the people with the real experience and true wisdom are the parents of older children and autistic adults”.
-That depends on what type of wisdom you are looking for. Most people with older children and autistic adults have NO CLUE about biomed treatment. Certainly no “real experience” there. So, of course, I respect them and I’m not taking away from their knowledge but it’s not helping me and my efforts. Look to the future Jenny, not the past…
-Sue M.
Case in point…..Thank you Sue.
Clone,
Why don’t you fill Jenny in on the biomedical treatments that you have tried on your ASD child?
-Sue M.
Sue said: “Jonathan, if I had known this was your list (again, didn’t read much of it), I would have been less “harshâ€. I know that you are a young student who obviously has time to put into these fallacies, etc. I just don’t…”
Sue, this is just too much. Do you think that belittlling (these references to Jonathan’s age, which you don’t actually know) is less insulting that being “harsh”? Putting him down is just ageist crap and reverse snobbery, and just makes you look bad. The info on his site is completely relevant to the way these discussions unfold. His insights are just as valid as anyone else’s.
Dave wrote:
“His insights are just as valid as anyone else’s”.
-Yes, they are. This topic just has no interest to me. I’m sorry. Someone directed me to his list and I gave my input about it. Fallacies, et all are just not important to me. I see that this offends you but so be it. If I happen to want to make a point and it is seen as ad hoc or a strawman or whatever, well ok. I’m still going to state it. You are free to point it out to me.
-Sue M.
Sue, I’m not offended that you don’t find the topic interesting, nor am I surprised. If you don’t care to make your arguments more compelling and creditable, that’s your decision. What offended me was your dismissal of his work based on his age, which is just unacceptable. If you really accept his insights as valid, great, then stop referring to his age.
_”Fallacies, et all are just not important to me”_
Thats comedy gold, right there.
Sue M: Why don’t you fill Jenny in on the biomedical treatments that you have tried on your ASD child?
Assuming I have an ASD child and there are biomedical treatments I tried on my child, or guinea pig for that matter, I see no reason to share medical information or advice with Jenny or any other stranger on the internet. Are you prepared to state the same? Clearly you feel that your experience and motherly intuition makes you qualified to offer medical advice and recommend chelation therapy to strangers, no matter the consequences.
The difference here is that I am not making any claims about cause or treatment so I have no reason to “fill Jenny in” about anything.
I can offer my opinion when it comes to the scientific validity of a given hypothesis or treatment and of course you are free to do the same, though I think you may have abandoned your efforts to discuss the science.
I’m not trying to influence or convert anyone and I won’t stand in your way while you follow your calling.
Kev: Fallacies, et all are just not important to meâ€
Thats comedy gold, right there.
ROFLMAO!!!
Here is more commentary on the “whale.to†site:
http://members.tripod.com/vaccinesupport-ivil/antivaxsites/whale.html
The owner of that website does not post his name on it, but it is widely known in the Usenet world that the owner is John Scudamore… a well-known Net Loon (he is big on tin foil hat conspiracies). He tends to post on various newsgroups in bursts (often with documentation that is selective and very very old), and then disappears. A search of him on misc.health.alternative is always entertaining reading:
http://groups.google.com/group/misc.health.alternative/search?group=misc.health.alternative&q=scudamore&qt_g=1&searchnow=Search+this+group
Sue M said: “-That is what they want you to think but any person with a brain cell left can see that that is a complete lie. Here are some examples of the babies who died in 1990 when the CDC said that they found only 1 death possibly associated with a vaccine reaction. Let’s see, child vaccinated with DTP/OPV:
6 died within 24 hrs. of vaccination
4 died within 2 days
1 died 3 days later
1 died 4 days later”
Source of this information? Details? Please tell us where this came from… also, please do not include any that are listed here:
http://www.ratbags.com/rsoles/list01.htm
Clone wrote:
“Assuming I have an ASD child and there are biomedical treatments I tried on my child, or guinea pig for that matter, I see no reason to share medical information or advice with Jenny or any other stranger on the internet”.
-Exactly, Clone. You have NO experience with any of this… Why do you bother?
-Sue M.
I would assume, HN, that Sue is going off of the VAERS data, and didn’t bother *reading* the disclaimers it requires you to say you read before you’re allowed to access the database.
You know, the ones where they say “There’s no verification of anything in here”, where they say “Any deaths in here just happened when the child got the vaccine, which doesn’t automatically mean the vaccine caused it, since there’s over TEN MILLION vaccinations being given a year, and at least some of these children are going to die, vaccines or no vaccines.” and so on.
But then, a lot of people don’t seem to be willing to accept that concidences do happen.
Sotek wrote:
” would assume, HN, that Sue is going off of the VAERS data, and didn’t bother reading the disclaimers it requires you to say you read before you’re allowed to access the database”.
-Of course I got it from VAERS, Sotek. The fact that HN could not get that is quite telling of his/her comprehension skills. I posted exactly where I got the information from. I mean, wasn’t it obvious? Wow. Yes, of course I read the disclaimer. Here are the FACTS:
1) Babies died from “SIDS” within hours or days of receiving the DTP/ OPV.
2) CDC claims that they “thoroughly examined” each death and apparently according to their quote, only found 1 death that could possibly be attributed to a vaccine.
3) CDC then calls for the DTP to be replaced by the DTaP (due to parents concerns, btw) for safety reasons. The DTP was found to cause brain inflammation, neurological damage, etc.
4) Oh, I get it… it can cause brain inflammation and neurological damage but no way can it cause SIDS.
-Again, I say BULLSH*T. Also, remember, only a very small percentage of deaths and damage from vaccinations is ever reported as such. Plus, this year in question (1990), was one of the first years that VAERS was even used, I imagine most people would not even have a clue about it and therefore, not even report a possible case. Especially, given the fact that doctors will swear up and down that vaccines and SIDS are not related… Sure, doc.
-Sue M.
hollywood wrote:
“Furthermore, yes, the DTP did actually have a protective quality to it. It was meant to prevent diseases infants die of, thereby “protecting†them”.
-Not to burst your bubble, hollywood, but the quote that I was giving you was specifically in regards to DTP having a protective quality against SIDS not preventing any disease.
-By the way isn’t that some sort of fallacy that you used above… It has to be…
-Sue M.
Sue M: -Exactly, Clone. You have NO experience with any of this… Why do you bother?
I didn’t say that either, did I? Anytime you would like to discuss the biology of autism I would be more than happy to participate. I seem to remember we tried that once or twice and you retreated to the safety of angry ranting. A familiar pattern for you I’m afraid.
Here, for example, you want to focus on VAERS data and vaccine safety when the topic is a Chelation Death
To your credit you do have a talent for changing the subject. Go ahead and argue that this little boy’s death was the indirect result of thimerosal induced autism, if you’d like, or try to compare it to a death following any other medical procedure but you cannot honestly say that his death was an acceptable loss compared to any other cause of death. Some medical procedures carry considerable risk but the risks are usually weighed against the severity of the condition.
Sue M
You picked apart what I said in order to make an argument. I was offering up personal information about three family members in re: SIDS and DTP. I see no point in doing the back-and-forth game with you about this matter.
Ciao,
hollywoodjaded
Clone wrote:
“I didn’t say that either, did I”?
-You didn’t have to say it, it is very obvious.
Clone wrote:
“Here, for example, you want to focus on VAERS data and vaccine safety when the topic is a Chelation Death”.
-What really got me going on the VAERS thing was HN’s ridiculous quote from the CDC. It shows a pattern of denial on their part…The topic was chelation death. It’s a tragedy that a young boy died. No doubt. It needs to be investigated. The doctor needs to be questioned, the parents need to be questioned about what tests were done, etc. The method of chelation needs to be looked at. I’m really not sure what else can be said about it at this time.
Clone wrote:
” Some medical procedures carry considerable risk but the risks are usually weighed against the severity of the condition”.
-Exactly, Clone… Exactly.
-Sue M.
-Sue M.
Sue M: -You didn’t have to say it, it is very obvious.
OK, if you say so. Anytime you decide to demonstrate your vast experience and knowledge you can pop in on Kev’s science board, you know, to state the obvious Et All
_”The doctor needs to be questioned, the parents need to be questioned about what tests were done, etc. The method of chelation needs to be looked at. I’m really not sure what else can be said about it at this time.”_
I have a suggestion.
*Maybe these things should’ve happened _before_ treatment went ahead?*
Did it not occur to anyone yet that if there had been safety trials into EDTA for autism, this boy would most likely still be alive.
The Doctors who are supervising any sort of chelation therapy are flying blind. They have no clue as to the short or long term effects. This is because no safety testing has been done before a whole bunch of people decided to plough ahead anyway.
Sadly, I predict Tariq’s death will not be the last of an autistic child dying from chelation. Especially if parents take Dan Olmsted damnfool Gold salts column at face value.
It’s not like chelation and gold salts and high doses of vitamin A are the only dangerous things that DAN! docs are doing to autistic kids. No one has ever shot high doses of b12 into kids ON a daily basis or on a every othere day basis or on an every three day basis, but McScandless, the sex therapist and aging expert (see her new website) is recommending daily doses of high levels of meB12. No problem. Because they all have good intentions, kids can’t be hurt.
Except maybe they can be hurt by all that b12. No one really cares about that though.
Hyperbaric oxygen, might increase the kids “oxidative stress” but the kids are getting it already.
Diets low in calcium because of no dairy, might harm the kids in the long run.
Having parents cram vitamins down their throats is bound to damage the kid’s relationship with his parents if they are forced, and some kids would have to be forced to take this stuff.
Having parents see you as a victim of poisoning when you aren’t a victim of poisoning is bound to have a bad effect on the parent child relationship, too.
But no one cares about that.
The extreme biomed parents just want to stick their fingers in their ears and sing “la la la, I can’t hear you, I have just made an appointment to have my kid’s blood taken out of him and inspected for excesses of heavy metals by a quack lab”
Abubakar was not “high in lead” he didn’t need to be chelated with EDTA, if he had lead poisoning he could have been treated in the UK. His parents were lured to the US by the DAN! crowd and probably by the book Evidence of Harm. Never mind the kid was not vaccinated in the US and so had far less mercury exposure.
Just shove Abubakar’s body under a rug and pretend he didn’t die because of extreme malpractice. It’s very efficient.
clone, wasn’t it et awl? Ewe should no better butt Aye think that Saulte has issyous better lepht uhlone.
Kev, My opinion: Sue’s killed this thread.
Kev wrote:
“Maybe these things should’ve happened before treatment went ahead”?
-I’m all for it, Kev. No issues here.
Bart wrote:
“Kev, My opinion: Sue’s killed this thread”.
-Hey, perfect.
-Sue M.
Kev said:
“Did it not occur to anyone yet that if there had been safety trials into EDTA for autism, this boy would most likely still be alive.”
Kev, if autism and metal toxicity are, as you say, not related, why should the safety trials that have been done in the past be insufficient? Why should it then make any difference that Abubakar was autistic? The young man either had lead (in which case chelation in some form was appropriate) or he did not have lead (in which case we have our first instance of malpractice).
Ms. Clark said:
“Just shove Abubakar’s body under a rug and pretend he didn’t die because of extreme malpractice.”
At long last, Camille, I’ve seen a single sentence from you with which I can agree. We cannot simply ignore this tragedy. And if malpractice occurred — which seems pretty likely — there should be some consequences. But we can’t determine the consequences until we know the exact nature of the malpractice.
Wade Rankin said: “The young man either had lead (in which case chelation in some form was appropriate) or he did not have lead (in which case we have our first instance of malpractice).”
If he had lead at the levels that this list shows indicated the need for EDTA:
http://www.mayoclinic.com/health/lead-poisoning/FL00068/DSECTION=7 … then he would have been treated in the UK by their National Health System. Possibly even in the same hospital that his father works for as a physician.
Actually, this is not the first case of malpractice. There was a doctor in Georgia who has been sued at least three times by parents of autistic children because of the damage done to them. This was mentioned in the Autism-Diva blog over a month before Tariq was killed:
http://autismdiva.blogspot.com/2005/06/chelation-for-autism.html
Doing a search on that doctor reveals that he did start up another practice in Nashville, but he was found out:
Click to access g4025144.pdf
and
Click to access March_2005.pdf
We can only hope that there will be more action against Roy Kerry.
HN,
I am not denying that Dr. and Mrs. Nadama sought chelation for their child as part of the overall treatment for autism. If their son had suffered only acute lead poisoning, I am sure they would have sought chelation in the U.K. I can only assume the lead toxicity was discovered in the midst of the biomedical treatment being rendered for Abubakar. If they were already over here, why would they fly back to the U.K. for chelation and then return here for further biomedical treatment.
Not all biomedical protocols include chelation. But what we are seeing is that many autistic kids do have “issues” with toxic metals, making chelation appropriate. My point was that Abubakar either had toxic levels of lead in his body, or he did not.
You will get no argument from me that chelation requires a great deal of care. And if malpractice occurred, action is appropriate. It is up to Dr. and Mrs. Nadama as to whether they will pursue a civil claim, but there should be an investigation by the State Medical Board. I understand the local District Attorney is already investigating the matter, and we can only hope that such investigations will bring all facts to light.
_”Kev, if autism and metal toxicity are, as you say, not related, why should the safety trials that have been done in the past be insufficient? Why should it then make any difference that Abubakar was autistic? The young man either had lead (in which case chelation in some form was appropriate) or he did not have lead (in which case we have our first instance of malpractice)”_
I have no idea Wade – neither did Roy Kerry, or Rashid Buttar, or Dr Usman, or Jeff Bradstreet. Thats sort of the point.
I am assuming he did not have much in the way of lead poisoning, which is why the EDTA killed him (the reason is that if the EDTA cannot latch onto lead because there isn’t any, it latches onto calcium… which REQUIRED in the blood for normal muscle function…. see:
http://www.theodoregray.com/PeriodicTable/Elements/020/index.s7.html , by the way, the only reason I chose this explanation of calcium is because I think this guy’s periodic table is really cool! It is a real table that he built after reading the autobiography of Oliver Sacks)
Though what distresses me as when I was reading over why Stephen Edelson lost his license to practice was that it was because of his “self-medication”! Not that he had harmed three children through chelation and saunas. He did have to pay the parents as a result of their civil lawsuits.
The problem is that the malpractice he commited was handled in civil court, not criminal.
Unfortunately the Nadamas are probably not going to persue a civil claim because they are in another country.
This starts to enter some more interesting territory. How are doctors who use untested procedures, and especially UNrecommended procedures that cause harm treated? Mostly what happens is that the state’s medical review board will revoke a license. But that still does not stop some questionable practicioners.
While many of you dislike the record of the webmaster of http://www.casewatch.org, it does have some interesting reading. There have been several hand-slappings by state medical boards for chelation… like this one that was on its main page:
http://www.casewatch.org/board/med/sica/settlement.shtml
There have been lawsuits over the results of chelation, for both death injury (Tariq was not the first fatality, just the youngest and the only whose only diagnosis was “autism”). Both from patients (or their parents) and by regulatory agencies in various jurisdictions. But still… even though there has been no evidence that chelation improves neurological nor cardiovascular function — there are many many purveyors of chelation out there (just do google search of “chelation” and check out the list on the right hand side of the page).
And many seem to have a dubious relationship with truthfullness. While this webpage:
http://www.americanheart.org/presenter.jhtml?identifier=3000843 has this quote “In fact, a number of deaths in the United States have been linked with chelation therapy. Also, some people are on dialysis because of kidney failure caused, at least in part, by chelation therapy.” …
This webpage: http://www.healingdaily.com/conditions/heart-disease-2.htm has this quote “The death rate while undergoing intravenous chelation therapy? Zero.”
So who are you going to believe? The non-profit organization whose purpose (according to their history page) is to “credible heart disease and stroke information for effective prevention and treatment.”…. OR … the personal website of a computer scientist with no medical training?
Hi Sue,
Concerning my list, think of it as a guide (not of what one must do, or else!), but as a listing of some broad types of arguments that don’t makes sense when you really look at them. I also explain why they don’t make sense.
If I was all alone in my statements these probably wouldn’t mean so much, but I did not invent these or first explain why they are fallacious. Some people who study how we “know something” or how we “know we have shown something” take these misuses seriously. A limited proof is that someone invoked the term “Ad Hoc Fallacy” which was not me and which I did not include on my list yet. These seem to be widespread in their use.
Anyone (I mean that) is welcome to comment on or criticize my list. I also think anyone who will criticize it should remove doubt and show why it is criticizable, and justify why their criticisms are important; they are welcome to do this too.
I do not claim to be particularly old or young (I am in the lower twenties in age) I will say that the hardest part of growing up for me, has been learning to think straight and to treat others with respect even if I disagree.
In the regard talked about above, in the autism field (Assuming my naiveté) I have great role models, and good ones, and sort of good ones, and mediocre ones, and kind of bad ones, and some truly horrible ones. I get to sort through them and decide which one(s) I should be like. And I get to ask “is the one I picked the best one in terms of ethics, science, and logic?”
The questions that (I can see) and that I would want to know if I were you, concerning this list would be “Knowing that some scientists take logic seriously and that I and people who agree with me, have a lot of people who oppose what we say; is there any reason for me to care what this list says?” and “What are the good and bad consequences of caring about what it says?”
I would guess if you know the answer to those you are all set in this department, no matter what answers you select.
Jonathan,
SueM is reacting against you because she doesn’t have the knowledge-base with which to attack what you say. Your age only comes up because that is one of the few things she can use to try to disparage you, and thereby give herself something about you to use as a basis for a downward social comparison.
SueM isn’t here to learn, or to debate: she’s here to either convert or, as we put it in Finnish, “vituttaa” (there is no sensible translation in English… except maybe “to fuck us off”). She has an obvious hard time accepting that there are other interpretations of data (we, being psychologists, are forced to accept this point), and it is clear too that – whatever data we offer from true scientific endeavour – that evidence will be seen by her as fraudulent/invalid/otherwise-unacceptable, whereas the “evidence” she offers is to be taken by us as gospel. This is what Kelly would call “hostility”: the propensity of some to try to make the evidence fit the theory in their minds rather than to alter the theory in their minds to fit what the world throws back at them when they test a hypothesis. According to Kelly, that is the only real sort of psychological disorder that there is, and it is quite a useful way of looking at it (since it can give rise to many different types of behavioural “oddnesses”, shall we say?!).
SueM knows what she is, whether or not she accepts it. I can’t take her seriously now. Neither should you. She isn’t worth the time and effort. You are a researcher, I am a practitioner… we deal with things in the real world and we use the science. She has only her prejudices for company. More to be pitied than blamed, really….
Wade R, on the other hand, is able to accept that there may be alternative explanations – even if he doesn’t necessarily agree with them. Big difference… he’s here to discuss, but SueM clearly isn’t.
HN: “So who are you going to believe? The non-profit organization whose purpose (according to their history page) is to “credible heart disease and stroke information for effective prevention and treatment. . OR … the personal website of a computer scientist with no medical training?”
You really have to ask? 😉
Ah… oh, yeh….
David:
Where can I find out more about Kelly and how do I go about finding the specific cite for his description of “hostility” ? Is the definition you provide yours or his? Brilliant, really.
Thanks, HJ
Clone wrote:
“Clearly you feel that your experience and motherly intuition makes you qualified to offer medical advice and recommend chelation therapy to strangers, no matter the consequences”.
-For the record, Clone… I would like you to show me where I have personally recommended chelation therapy to strangers? I would be interested in seeing it. I have recommended biomed to people, I have recommended diet, probiotics, omega 3’s … but not chelation unless of course you can prove me wrong… go ahead and try. Please don’t put words in my mouth.
-Sue M.
Kev :
“I have no idea Wade – neither did Roy Kerry, or Rashid Buttar, or Dr Usman, or Jeff Bradstreet. Thats sort of the point.”
Snappy comeback, Kev, but it evades the question. Put another way, why should separate safety studies be necessary for medical procedures based on the single difference that the patient is autistic? The most logical reason for demanding separate safety studies is that the heavy metal toxicity IS related to autism, and that chelating might then have an unforeseen impact on the overall clinical condition. Otherwise, it should be acceptable to rely on the protocols that have already been established. And that leads us back to the relevant questions in this case: was there a problem with lead toxicity making chelation appropriate, and, if so, did Dr. Kerry follow the appropriate protocol? If the answer to either of those questions is negative, then we have a single case of malpractice.
To re-iterate: If the child actually HAD lead poisoning he would have been appropriately treated in the UK by the NHS.
Since the coroner’s report states that the EDTA actually damaged his muscle, the most likely scenario is that the calcium had been REMOVED by the chelation. Calcium is pretty much a required element in your body… without it you die. Just like young Tariq did.
Taking in the first paragraph above, which can be called a “fact”… and the one following, which can be called an “educated guess” but which uses a “fact” based on what the coroner wrote… The most obvious conclusion is that:
_The boy did NOT have lead poisoning._
Also… another fact: EDTA chelation is NOT safe. It has some serious risks which is why it is NOT used unless the lead levels are at a very high and very dangerous level. Try reading this webpage: http://www.mayoclinic.com/health/lead-poisoning/FL00068/DSECTION=7
Another FACT: In the decades of papers in http://www.pubmed.gov about the chelating of children with real heavy metal poisoning (including the one about the Pink Ladies, http://www.cmaj.ca/cgi/content/full/168/2/201 )… it does not REPAIR the damage, it only prevents more damage. So even if a kid with neurological damage from mercury, lead, cadmium or gold salts gets chelation they will not recover.
In many times I saw the development of a polarized discussion with I respectfylly do not agree with. But I also think that another option is possible. To this option to be true for me , and I am the first to stick to this, several requirements, if you can call so, are needed.
*Agreement in mutual respect in disagreement.
*Agreement in that the research in Autism is far to be complete to make conclussions.
*Agreement that the only way to learn is to consider the possibility to be wrong.
With this basis, I want to present some thoughts related to what was said in this thread
We have problems here, serious problems with statistics about vaccines safety and adverse effects and autism incidence from epidemiology ONLY, for one side. This is a public aspect related to vacination policies and medical scientific evolution.
We have here several problems involved about how we approach to autism, so a private aspect: the way we, parents of ASD children ,try to manage all the emotional aspects.Diagnosis and treatment is so personal that EVER you are influenced in your opinion by your personal experience with doctors, other parents, other contacts, the information you can analyze.
All lifes are precious and important. I care. I care about children affected negatively ( or dead) by vaccines and children affected negatively ( or dead) by unsafe treatments.
I care about the death of this child. I can not imagine the loss of their parents, their pain. I imagine the same pain for his/her parents by every child damaged or death, accident, malpractice, vaccines or , as it supposed to be here, chelation done in a non-proper way.
I think that another space of discussion is possible. A place where other aspects can be considered
1-The way Doctors in mainstream medicine tell you the diagnosis. As I told several times, it is one, for me was, of the most traumatic experiences in my life. There are several ways of presenting things.
Many children with autism will never develop language and live independiently and they will have a lot of disabilities and your life will be hell. Fortunately not all. Prepare to live with a disease like cancer.
Many children with autism will evolve to have productive and independient lives. Unfortunately not all.
What do you think is the presentation of the doctors of these 2? For me and for many, it was the first .
2-Parents must become experts in their children, to go for options with/without mainstraimed doctors and to ask for safety procedures and treatments if you consider a biomedical approach. Whatever the case you must have access to information of high scientific quality and to know about safety and vitamins, minerals and aminoacids RDI and problems with water soluble or fat soluble vitamins and myriad of other medical concepts. If Chelation is considered, you must be pretty aware of the problems with the labs test, the labs themselves, the challenge tests, the chelators and their pharmacology, the long term concerns. So YOU must become part of the medical equipment because, the knowledge is dismissed by mainstreamed or can be potentially dangerously applied by biomedical and in both cases is different from published science.Whatever the case, parents go from one doctor to another. So for me here we have problems :Doctors.
Doctors dismissing parent´s concerns, doctors that tell you†all is autism†and testing nothing. SO, parents that choose biomedical have VERY BAD experiences many times with mainstreamed medicine and this is the reason why they choose it. BUT not all mainstreamed doctors are this way and I can also testify this by personal experience.
AND doctors in biomedical approach doing unsafe treatments without warnings about potential risks , doctors jumping to non-proven treatments , doctors that do not consider high standards of safety are also a problem here, an extremely important problem that must be considered with care. BUT not all doctors in biomedical are this way and parents have a lot of information about alternatives.
So we must consider a Responsible AND informed choice from parents as the second important point, a private one. I consider I can discuss, science, procedures and doctors doing procedures. But I never can make judgements about other parents decissions because I am not them.
About this thread I have another questions, in general
How was lead poisoning detected? Was it tested? How long before the IV chelation? Using what tests, blood, urine, hair, reproduced? When and at what lab? Why the IV treatment was recommended? Did the doctor warn about the potential risks, short and long terms?? What other treatments were taken place, diet, supplements? Are there any possibility of lack of Ca because it was not included in the protocol? And I can go and go, guessing.
These are very personal questions and I think that the family probably will never want to answer because nobody has the right to make a public scrutiny of their personal decissions. And I respect and I understand them . Only presented the questions as possibilities of other analysis.
So
How can we conclude anything with the public information we have NOW, beyond the certain positibility of the doctor malpractice, that if it is demonstrated must be seriously considered ?
Kevin, sorry by the very long post. For any of you that can be not interested of my approach or consider that perhaps I included personal information is not of your interest, I apologize. I tried to give the most honest possible presentation of why I think the way I do.
MarÃa Luján
HJ: “Where can I find out more about Kelly and how do I go about finding the specific cite for his description of “hostility†? Is the definition you provide yours or his? Brilliant, really.”
Here’s the URL, and you may have to c&p it…. http://www.ship.edu/%7Ecgboeree/kelly.html
The whole idea was Kelly’s… and, yes, it is indeed brilliant! From the above, although I do recommend reading the whole of George Boeree’s site (it too is brilliant), this is the definition bit:
“… when our core constructs are on the line, aggression may become hostility. *Hostility is a matter of insisting that your constructs are valid, despite overwhelming evidence to the contrary.*”
And this is the bit that comes from that eventually:
“This brings us nicely to Kelly’s definition of a psychological disorder: “*Any personal construction which is used repeatedly in spite of consistent invalidation.*” The behaviors and thoughts of neurosis, depression, paranoia, schizophrenia, etc., are all examples. So are patterns of violence, bigotry, criminality, greed, addiction, and so on.”
-“Snappy comeback, Kev, but it evades the question. Put another way, why should separate safety studies be necessary for medical procedures based on the single difference that the patient is autistic?”_
I really wasn’t attempting snappy – its an honest answer. We don’t really know what causes autism and we don’t really know even _how many_ causes there are – is it really so far fetched to imagine a cuase that might affect neurochemistry and which chelation might seriously adversely affect?
‘We don’t know’ is in my opinion the only truthful answer anyone can give – and that to me is far too big an unanswered question when deciding on using not just chelation but a form of chelation known to be dangerous and for which a less dangerous alternative already exists.
This is a paper that studied the effect of Succimer (DMSA) on children with lead poisoning:
http://pediatrics.aappublications.org/cgi/content/full/114/1/19
This was in its conclusion: “The psychometric and behavioral assessments of lead-exposed children who were randomized to outpatient chelation or placebo therapy in the TLC study revealed no benefit of therapy at age 7 years. Unlike our first wave of follow-up, for which assessments were conducted over a relatively broad age range (48–70 months), the testing reported here was conducted in a more carefully controlled age window and after children had entered school. Testing at age 7 allows assessment of cognitive and performance skills that are absent or inaccessible in the preschool-aged child. The absence of benefit at this later age adds credence to the earlier negative findings13 and _reiterates the failure of chelation therapy to alter cognitive and behavioral outcomes in preschool children with blood lead levels in the range of 20 to 44 µg/dL._ ”
Did you get that last part? Here, I will repeat it for you:
_reiterates the failure of chelation therapy to alter cognitive and behavioral outcomes in preschool children with blood lead levels in the range of 20 to 44 µg/dL._
Now this is with a chelator that is less nasty than EDTA.
So what still compells parents to risk putting EDTA into the veins of their children for no good reason?
Kev said:
“We don’t really know what causes autism and we don’t really know even how many causes there are – is it really so far fetched to imagine a cuase that might affect neurochemistry and which chelation might seriously adversely affect?”
That, my friend, is the A+ answer. If one could not imagine such a cause, nobody would be interested in chelation. And I really can’t argue that studies should be done for safety as well as efficacy. In the meantime, parents like me are having a much harder time weighing these decisions.
Sorry to be so behind the discussion, but it took me a while to check out something.
I called three of the local hospitals and spoke with their clinical laboratory people. All three do both blood and urine mercury and lead levels. The urine mercury tests were $35 at all three labs – something about insurance and Medicare forcing them to charge the same for the same test.
So, if anyone wants to check up on the results they got from a mail-order lab – or wants to avoid spending $200 to $300 for tests that are no more accurate for mercury (and include a lot of things that haven’t been properly normed), have your doctor write you a slip to have the test done at your local hospital clinical lab.
As for possible sources of error in the mail-order labs, the most likely is contamination of the specimen containers. Mercury is a ubiquitous contaminant and the tests for it are able to detect it at amazingly low levels.
When we do mercury tests in the lab, we make sure that all the specimen containers are washed with mercury-free (as determined by ICP-MS) nitric acid. If the mail-order labs are using the standard urine collection cups, it is entirely possible that they are contaminated with mercury. This would also show up as significant batch-to-batch variability.
Final point – even if it turns out that the mail-order labs are inaccurate (and that their “other metals” tests are poorly normed and not clinically relevant), that doesn’t mean that they are “lying” or “making up” their results. More likely, they are just well-meaning folks whose work is inaccurate.
Never jump to assuming malice when ignorance is just as likely.
Prometheus
Wade,
I understand your dilemma. My son is twenty now. I wrote this on my blog hust before Christmas.
“I do object to people who prey on parents and offer them false hopes at great price. In one sense we were lucky because our son was not diagnosed until he was 12. At three years old he had ear infections, sleep problems, tantrums and no speech. If we had been introduced to the biomedical movement then, we would have bought it all. Now he is 20 and applying for a degree course at college, done without the benefit of any biomedical intervention.”
I think the guiding principle is that we do not experiment with our kids’ lives. If something is experimental or controversial or untested you are doing the right thing by your child if you choose to ignore it.
The problem is the same now as when I wrote my book six years ago. We either worry that we are not doing enough or over compensate by becoming autism warriors, determined to tear down all the obstacles that lie between us and effective treatment for our children even if we have no real idea what that treatment should be. I will put the relevant excerpt up on my blog.
Mike,
I appreciate what you are saying, but I really don’t view it that way. If I have become an “autism warrior,” it is not by choice. And while I suppose I can’t deny that some of the interventions we are using with my son could be deemed “experimental,” we do not attempt anything that would be an undue risk. My agreement with Kev was limited to the need for further research on what interventions may be effective, why they work, and what dangers are presented. As things stand now, parents have a much more difficult time weighing these decisions on a risk-benefit basis.
My wife and I do not practice biomedical interventions blindly. We do not simply take a doctor’s word for it. (After all, we believe that medical science is part of the reason our son is autistic.) One has to understand what is happening at a biochemical level to decide whether a particular intervention is warranted. Fortunately, my wife is a medical professional who is able to lead me through this a great deal.
All of our children are anecdotes. The fact that your son was able to overcome his obstacles does not mean that biomedical interventions are not warranted for other children. Likewise, the fact that such interventions seem to be associated with remarkable progress in my child does not mean that every child must follow that path or be doomed.
I shall read your blog with interest.
Wow. The debate is still going. Some things to note.
EDTA doesn’t TOUCH mercury. One doesn’t even need to go to environmental doctor school to know that, all one has to do is look up the kinds of heavy metal poisoning on emedicine.com.
My environmental doc (I had real heavy metal poisoning. The kind that a real doctor will diagnose and treat. It showed up, in the classical ways, AS AN ADULT. No more abnormal labs, still autistic. hm.) agreed with that, says DMPS is dangerous, and says that MOST of the “Dead is better than Autistic, Nutbar” protocols are insane. I was 22 and took 3 pills a day, and essential minerals because…chelators strip minerals!
Incidentally, organ damagee also occurs with off label chelation. Chelating is incredibly hard on the body. I know a child who lost a kidney. That’s just one. I don’t know that many kids who went through this treatment–how much OTHER organ damage has been done?
As for Lupron…it puts the body in MENOPAUSE. This gives the kids intense risks for osteoporosis (just look up the PI sheet…). But damaging the physical body is better than having an autsitic kid, right?
I mean, listen to yourselves, “Thimerosol ruined her”? No wonder there’s such a high suicide rate in autism. No wonder kids of Anything For A Cure parents are so angry–they know they aren’t wanted.
Kassiane
“‘A child has died of chelation,
Has a child ever died of autism?
Think about it, parents’.
-Is it possible to think of the hundreds of infants who will never get a chance to live a fulfilling autistic life because they were killed or seriously maimed by vaccinations. I’m sorry, it’s reality people. What can we do about that?”
Well, setting aside the “killed” comment because the kids who people are calling vaccine injured are alive…
I’ve known many autistic kids, including myself. All of them have the potential for a fulfilling life – including the teenager who communicates mostly by pointing and grunting. Even if he were to stay at about the level he was at when I last saw him a year ago, he could have a fulfilling life, because you don’t need to talk or look after yourself to love life and be a valued member of your community.
Of course, he might not get that. He might get locked up in some institution and spend his life throwing tantrums and getting tied down and drugged until he finally dies with several big burly men holding him face-down. If that were to happen, it would be a tragedy, especially since it’s preventable. All that is needed is for someone to both care enough and have the needed resources to make sure he lives in the community, with people who truly do care about him and not just the glowing image they get from putting up with society’s garbage.
Jenny, I suggest you read Through The Eyes of Aliens by Jasmine O’Neill. And always remember your son is beautiful. He’s not some damaged version of a normal person, but a different kind of person with his own kind of beauty. Also read Jim Sinclair’s article Don’t Mourn For Us, available at http://www.autistics.org/library (and read the others too, many of them are excellent). I hope you can learn from the caring mistakes parents of many autistic self-advocates made.
Oh, and ponga-ponga-pocksicker to all those ad hominem attacks (read The Wind Singer to understand what that means).
Ettina
Nice post, Ettina 🙂