Its been an emotional few days.
The whole community, from the staunchest biomed to the most steadfast Neurodiversity supporter was shocked by the death of an autistic child.
How that shock has expressed itself is very revealing. The main instigators on the Evidence of Harm email list elected to express their condolences to the Doctors who administered the treatment. JB Handley elected to regurgitate a load of corrupted stats that meant less than nothing. David Kirby decided to cover his well-shod arse with a ‘Wha??? EDTA??? Wha??? Never heard of it??? Its the Scientists fault’… for not studying a treatment for a condition there no evidence to support and which Pediatrics, amongst many, many others have stated repeatedly was dangerous.
I’ve posted calmly about it and I’ve posted angrily about it. I’m still not sure that the main point I was making was well made. This is because I was upset, shaken and – occasionally – furious at what I saw as the vapid complacency of a few people.
Never mind – a child is dead. That should make everyone angry. Why? Because using chelation to treat autism (and please, don’t anyone offend my tender sensibilities by pretending you think that wasn’t what was going on) is bogus.
Look – in order to legitimise the use of Chelation, you first have to prove a causative mercury element to autism. *All* the science refutes such a causative connection. *None* supports it. Using chelation means you are using a treatment for a condition that doesn’t exist. Now you, dear reader, may _believe_ in such a connection but _belief_ is not _evidence_ .
Chelation is a dangerous procedure – however one does it. For kids its especially dangerous. For autistic kids, its an _unnecessary_ dangerous treatment.
I want to introduce you now to a story you may have heard before. Before you read it I want to tell you that in its basics, its _exactly_ the same as this one. A little autistic boy dies following an experimental, untested procedure. When you’ve read it I’d really like to hear from you how I’m wrong and how that case is different than this case.
OK – lets start:
The adults formed a circle around the boy and placed their hands lightly over him as they prayed for him, Hemphill said.
“[They] were just praying for him and asking God to deliver him from the spirit that he had,” Hemphill said. “The little boy had spirits in him, and we was asking God to deliver him.”
Hemphill said the prayers were in accordance with Matthew 12:43, which says, “When an evil spirit comes out of a man, it goes through arid places seeking rest and does not find it.”
At the end of the prayers, one of the women noticed that Terrance was not breathing. One of the adults called 911, but when emergency services arrived around 11 p.m., the boy was dead, Hemphill said.
Hemphill said Terrance was not restrained. He was seated in the center of the group with his hands under a sheet “because he had started scratching,” Hemphill said, but the sheet was only lightly placed over him and was not tied.
“Nobody wants to see nobody pass away, because we love the child,” he said.
Go read it all.
They loved the child so much they conducted an unverified, untested, highly criticised, unproven treatment on him that either led to or directly caused his death.
I’d also like to hear your opinions on autism being described as ‘an evil spirit’ because that doesn’t sound too far away from ‘the hell of autism’ (a common phrase amongst mercury mums) to me.
Left Brain Right Brain 
I’d also like to hear your opinions on autism being described as ‘an evil spirit’ because that doesn’t sound too far away from ‘the hell of autism’
The whole “mercury is the devil” thing definitely resembles the “possession” and “exorcism” mindset, yes.
The child is posssed by something evil (mercury, metals, whatever) and must undergo a rituatl (chelation) in order to be healed (to be “saved”). They believe sincerely that their child is possessed by evil spirits (i.e., poisoned by mecury or some other substance that can be removed), and that if that is done, the child will be healed, normal, etc.
I don’t, in all honesty, know what to think about the concept of demon possession, and I won’t comment on it. I do, however, know that “possession by demons” is something that has been used to justify all manner of abuse, cruelty, and ritualistic behaviors since humans first came up with the idea, probably back in the Stone Age.
Previous generations have (and sometimes still do) believe that “demon possession” is the cause of mental illness, of various kinds of physical illnesses, of all manner of unusual behaviors (Tourette’s Syndrome, just as an example). Persons who were “possessed” were subjected to all sorts of things, from beatings to starvation to locking them up and restraining them in various ways, etc.
Looks like chelation as a “cure” for autism is just the lastest in a long history of this pattern of behavior. It is somewhat surprising that people in this day and age, particularly with the amount of information available to the average person, who will fall for this kind of mystical “cure” for “unexplained” oddities and illnesses and conditions, but the human brain tends to be pretty primitive, no matter how much technology it’s exposed to, I guess.
The other part is that in a cult, no one wants to be the person for whom the magical incantations DON’T work.
Because then it means that god is against YOU. So the people for whom chelation doesn’t work aren’t going to go around talking about it. They will skulk off and pretend they didn’t even try it or feel guilty because they didn’t do it right.
One well known father abandoned all the biomed stuff and his sons started to do better, one of them would be considered “off the spectrum” by most of the chelating parents (according to to the father). But the biomed/mercury parents can’t believe that he gave up the biomed treatments and say, “He must not have been doing them right and so he gave up” or “He gave up too soon” and the best one, “The reason his one son got better was because of the biomedical treatments, obviously.” I have seen them write about this dad on the EoHarm list.
Kevin is considered evil by some of the parents (who have told him so) for not ever trying the biomedical stuff on his daughter.
At any rate, we don’t hear much about the chelation failures, for one thing tiny improvements are considered successes. If you read the “autismmercury” Yahoo group, which is public, you can read about the parents dosing their kids with this and that and then reporting “my kid looks gray”, “he suddenly has green stuff coming out of his ___.”, “he seems to be way hyper ever since I started to give him.___.”
But that doesn’t stop others from continuing to experiment. Personally, I don’t think that “munchhausen’s by proxy” is a common thing and the accusation can be made against fine and loving parents, easily and carelessly
and I know it’s a dangerous accusation to make,
but when you read about these people and what they do to their kids with various wacky treatments, you have to wonder if they aren’t enjoying playing doctor on their children or if some of them enjoy hauling their kids to doctors every week for new treatments.
Quack doctors are almost always very nice and supportive people, they are charmers, so they make the parents feel “supported”, so long as the parents don’t run out of money. Just like cult leaders who are so charming, until they can’t use the people any more because they are used up.
Just thought I’d mention that I do know how to spell. *sigh* Sometimes my fingers can’t keep up with my thoughts and I typo all over the place. Kev thoughtfully provides a spell checker, and I really, really ought to use it….
Another aspect of the “demonizing” of mercury is that it puts the belief system around it on par with religous faith. The tenets become beyond challenge, eliminating the possibility of discussion based on fact. If someone really believes autism is caused by mercury and that there is a goverment / big pharma / mainstream medicine conspiracy, they can always support their point with a by contriving one more aspect of the conspiracy. Its easier than challenging the belief and the hope based on it.
Shawn
mercury toxic mom, you’re right about one thing: chelation doesn’t always work. There are other biochemical factors to consider. Such as testosterone. High levels of testosterone in a child’s body can trap the mercury. It’s why 4 times as many boys get the disorder than girls.
Testosterone, depending on its levels, can make chelation very difficult…or render it less effective. That’s why there’s a new treatment being studied that involves Lupron injections (to temporarily lower or eliminate testosterone levels) to make chelation more effective. The reverend Lisa Sykes (in the u.s.) saw miraculous results with that approach.
Those of us investigating the biomedical issues of autism…and seeking to recover our children… cannot pretend to have ALL the answers. It is very much a puzzle. But we’ve found some of the biggest pieces to that puzzle… For some children the puzzle is simpler. For children like my daughter…it’s trickier. I figure if we can recover my daughter before she’s fully grown, we can help nearly anybody.
“High levels of testosterone in a child’s body can trap the mercury.”
Okay, where did you get little tid bit of information? Where has that been verified? Please do not use anything published in “Medical Hypotheses” .
HN, this is new stuff. It’s only being studied now…I got the inside scoop from a few people connected to it. Nothing published that I’m aware of, but there has been a long-time speculation that testosterone was related to the biochemistry of autism. Now they believe they’ve found part of the mechanism that ensnares more boys than girls…
Thats really weird because I got the inside scoop from a few people connected to the study of thiomersal not being linked to autism in any way whatsoever – nothings been published but there’s long been speculation that they’re right. Now they believe they’ve isolated the gene that governs gullibility!!!
Science is fun!!
Erik wrote:
“That’s why there’s a new treatment being studied that involves Lupron injections (to temporarily lower or eliminate testosterone levels) to make chelation more effective. The reverend Lisa Sykes (in the u.s.) saw miraculous results with that approach.”
This is new information for me. Lupron is used for the chemical castration of convicted sexual predators. It’s also used on kids who develop precocious puberty.
Who is doing the study on this “castrate and chelate” protocol?
Anne said “Who is doing the study on this “castrate and chelate†protocol?”
Oh why, oh why!? Why did I have to read this after reading the last comment (Anonymous, 8/30/2005 10:49 AM) of:
http://oracknows.blogspot.com/2005/08/sadly-it-was-only-matter-of-time.html
ROFL… Give me a “G”… Give me a “U”… Give me a couple of “L”s… Give me an “I”… Give me a “B”, Give me another “L”… and end it with an “E”… What do we have….!
Testosterone?! Oi. Yet another “revelation” to the cult…
Maybe low testosterone is the reason why so mercury cultists lack the balls to think of anything original
Erik’s “scoop” was reported in one of the Geier and Geier “studies”. This one was published in – you guessed it! – Medical Hypotheses.
Geier MR, Geier DA.The potential importance of steroids in the treatment of autistic spectrum disorders and other disorders involving mercury toxicity. Med Hypotheses. 2005;64(5):946-54.
More of the same.
Prometheus
Did you happen to notice that I asked for evidence NOT published in “Medical Hypotheses”?
Why would one not like to use that as proof or evidence? Well for one thing all you have to do is look up the word “hypotheses”, from http://www.dictionary.com:
1) A tentative explanation for an observation, phenomenon, or scientific problem that can be tested by further investigation.
2) Something taken to be true for the purpose of argument or investigation; an assumption.
3) The antecedent of a conditional statement.
…. In other words: WILD guesses!
From the author’s instructions at Medical Hypotheses http://authors.elsevier.com/JournalDetail.html?PubID=623059&Precis=&popup=:
“Medical Hypotheses takes a deliberately different approach to peer review. Most contemporary practice tends to discriminate against radical ideas that conflict with current theory and practice. Medical Hypotheses will publish radical ideas, so long as they are coherent and clearly expressed.
Furthermore, traditional peer review can oblige authors to distort their true views to satisfy referees, and so diminish authorial responsibility and accountability.
In Medical Hypotheses, the authors’ responsibility for integrity, precision and accuracy of their work is paramount. The editor sees his role as a ‘chooser’, and not a ‘changer’: choosing to publish what are judged to be the best papers from those submitted.”
In short, they don’t submit the articles to be peer reviewed and they don’t question the data or conclusions, so long as they are “coherent and clearly expressed”.
This is very similar to theNational Inquirer‘s editorial policy of “never question a source”. It also explains why no real scientist takes anything in Medical Hypostheses seriously.
Prometheus.
I think Boyd Hayley’s big on the testosterone theory.
If I remember it was Sotek on another blog who pointed out that they would have seen a big influence of sex (gender) on mercury poisoning victims in Minimata bay and elsewhere if testosterone was such a bad deal.
Up to this point Hg poisoning seems to be an equal opportunity problem.
They needed this little pearl to explain why there are more boys than girls with autism. Hey! Need a fact? Just make it up! See Prometheus blog for a recent entry about “string of pearls” reasoning, photoninthedarkness.blogspot.com
As for other questionable “journals” the Journal of American Physicians and Surgeons.
JAPS
But that doesn’t sound nice, so they call it JAPandS, which is almost as weird as JAPS is potentially offensive. I don’t trust these guys just based on their inability to name a journal. The other major source of weird autism articles? Medical Veritas. They even put the results from a Doctor’s Data lab test on the cover of one of their issues. A bad sign.
Erik since you are investing int he td dmps which is not proven to pass through skin, how about if you invest a few bucks in getting your daughter’s urine or blood tested for DMPS? By a lab that doesn’t know your daughter is autistic a local hospital lab. Why wouldn’t it be worth it to you to know how much of it is inside her?
Personally, I wouldn’t put anything that wasn’t FDA approved and not covered by an application for permission to experiment on kids – on my child. Buttar has never mentioned getting permission from an IRB to smear this chemical on kids. He just did it.
I predict that you will never do it. None of you parents want to know the truth. You’re living in a pleasant little denial.
Isn’t is Dr Megson who wants to use the chemical castration injection thing (Lupron) on little boys and girls? Diid she get permission from an IRB? How about permission from the makers of Lupron. Since you have those hoity toity connections, Erik, how ’bouts you ask them.
Miranda Reitz
Unfortunately, no IRB approval is needed to give a medication that is USFDA-approved for any use to someone for conditions other than the one(s) in the FDA-approval. The manufacturer can’t advertise for those “off-label” uses (as they are called), but that’s about the extent of the limitations.
This is generally a good thing, since the “side effects” of drugs often turn out to be a more important use than their original use. From my own experience in pain research some years back, some of the best drugs for neuropathic (nerve) pain were drugs originally developed (and approved) for depression, seizures and hypertension. In most cases, the drugs used for neuropathic pain were either mediocre or downright poor for their original use, but were great at treating an otherwise intractable problem.
However, the “Dark Side” of off-label prescribing is that anyone with a medical license can prescribe drugs for any use whatsoever and they won’t get into trouble (generally) unless a patient complains. There are, of course, exceptions – a physician prescribing kilogram quantities of cocaine for depression will probably end up in trouble. But, for the most part, it takes a complaint from a patient (or their guardian) to even get an investigation started.
As a result, people like Buttar and others of his ilk can prescribe drugs in any way they see fit. And in the US, the political pressure on the USFDA (back in the Clinton years) resulted in a large number of compounds that had never been through the USFDA approval process being given blanket approval if they were used in medications compounded on a doctor’s prescription – like TD-DMPS.
DMPS, the active ingredient, has never received FDA approval, but it can be used because of this loophole in the law. As a result, hundreds or even thousands of children are exposed to a drug that probably would not meet FDA requirements for safety and efficacy.
Getting back to IRB approval. I need IRB approval to give rats a dose of salt (NaCl), but Dr. Buttar needs only the parents’ consent to dose autistic children with whatever he gets a mind to give them. IRB’s only apply in research, something Dr. Buttar has studiously avoided so far.
If he had done any real research on his lotion, an IRB would have insisted that he demonstrate that the DMPS is absorbed before the study started – since that is only way to be sure it’s not just another placebo.
As far as I can tell, the only way Dr. Buttar will ever be exposed to scrutiny by a regulatory agency is if a patient (or their parent/guardian) files a complaint (or a lawsuit). Given Dr. Buttar’s charm and charisma, this seems unlikely.
Prometheus.
Medicating with zero accountability. Thats some scary stuff. I can never figure out why a group of people go into screaming hysterics about putting something in their kids bodies that has been tested and has stood the test of decades yet are totally willing to put something totally untested and which we know next to nothing about in respect of autism into these same kids bodies.
Crazy times we live in.
Kev,
It’s going to get worse.
Boyd Haley is reportedly “very interested” in the potential of gold therapy. If this ever gets going, the number of children harmed or killed will skyrocket.
‘Til now, the autism “biomedical” therapists have been using substances and drugs that were pretty safe – the exceptions being IV-Immunoglobulin and IV-EDTA.
If they start using IM or oral gold with the same cavalier, “we can’t wait for studies; we’ve got children to save!” mentality, they will definitely kill children.
Prometheus.
It really is getting out of control. What next after Gold? Bleach?
What the doodle are you guys saying? I am 17 years old and I have Autism and i don’tfeel demons possess me. Why they do this huh? Does all teens have Autism and got possess by a demon? Also why does people say mentall illness people are Retarded ? That’s not polite and it’s turtorable for others and people have no right to say that. Kevin why do you say that ? ” Kill the children” DO YOU GUYS EVER GO TO CHURCH????
Hi Lea,
When I posted this, a 5 year old autistic boy had died following a course of treatment of EDTA-IV chelation. I wanted to draw a comparison between that story and the story of another autistic child who was killed by people who thought autism was merely demonic posession and that they could cure him by exorcising these demons.
My point was that both these beliefs are totally wrong and scientifically invalid – also that they are based on belief, not science and should be treated with suspicion at best.
I don’t think anyone has said here that mentally ill people are retarded – its an appalling word that I personally find offensive.
I guess I’m not really sure what it is you seem to be angry about.
Lupron and testosterone reduction. Hmmmm. We all know about the hefty law suit Lupron was engaged in, regarding over charging dont we? WE also cant escape the obvious in this discussion about Lupron, i mean, autism-testosterone limitation…..is this one step towards what “they” really want to do, i.e. prevent our kids from breeding?
Having looked at the Geiers videos, i am far from convinced by these two talking heads. they wont be getting my child as their guinea pig. They are blaming testosterone for kids reaching puberty too soon, or rather that mercury is part of the testosterone increase. What about all the hormones in our present environment. Its been well known that puberty is coming quicker and quicker with kids all over the world. There are many reasons for it, not just mercury poisoning.
Why deal with the problem of mercury toxicity by injecting this very dangerous drug? I mean, what would it take to convince a parent to do that??
I read somewhere recently that a parent is considering using Lupron on his autistic daughter. But my understanding is that Lupron in females decreases the production of estrogen, not testosterone, so I don’t understand why it would be useful even assuming the validity of the idea that testosterone is mercury-friendly.
easy to say “this will not work”
but what do you propose ?
Nothing ?
ok!
But please, keep silent !
Cedric who are you responding to? Who do you wish to silence? The ones promoting dangerous intravenous treatments, or those promoting acceptance of the children as they are?
Of course EDTA does not work except for the most serious of lead poisoning… even then it is the treatment of last resort. See:
http://www.mayoclinic.com/health/lead-poisoning/FL00068/DSECTION=7
As for proposals… if you have read the rest of Kevin’s blog you will see the importance of good educational placement (there is more than one comment on that). PLUS the importance of good speech and OT/PT.