Thursday, January 19, 2006

The CDC flubs it

I had planned on taking it easy, blog-wise, today, just posting my usual biweekly plug for the Skeptics' Circle and maybe a couple of very brief Instapundit-style link and comment posts that would take only a few minutes to bang out. However, unfortunately, sometimes stories pop up that demand comment, and, ever since I first found myself rebutting conspiracy theories about mercury and autism in June, I now feel almost obligated to comment whenever something important related to this topic happens.

As you know, I've written quite a bit about the use of chelation therapy for "treating" autism and how there is no scientific, physiologic, or clinical basis to suspect it does what its advocates claim it does or any clinical evidence from well-designed trials to suggest that it does anything to relieve the symptoms of autism. All of this made me particularly distressed back in August when I learned of the death of an autistic boy named Abubakar Tariq Nadama while undergoing chelation therapy. To my mind this death was an obvious "clean kill" by the doctor who treated him, Dr. Roy Kerry, and the autopsy results confirmed that it was indeed chelation therapy that caused the tragic and senseless--and completely preventable--death of this boy.

Today, my attention was drawn to this article:
One of the nation's foremost experts in chelation therapy said she has determined "without a doubt" that it was medical error, and not the therapy itself, that led to the death of a 5-year-old boy who was receiving it as a treatment for autism.

Dr. Mary Jean Brown, chief of the Lead Poisoning Prevention Branch of the Atlanta-based Centers for Disease Control and Prevention, said yesterday that Abubakar Tariq Nadama died Aug. 23 in his Butler County doctor's office because he was given the wrong chelation agent.

"It's a case of look-alike/sound-alike medications," she said yesterday. "The child was given Disodium EDTA instead of Calcium Disodium EDTA. The generic names are Versinate and Endrate. They sound alike. They're clear and colorless and odorless. They were mixed up."

Both types of EDTA are synthetic amino acids that latch onto heavy metals in the bloodstream.

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.

Officials from the state police, the district attorney's office and the coroner's office will meet soon to decide whether to hold an inquest into the child's death and whether it should remain listed as accidental.

Dr. Brown said the same mix-up happened in two other recent cases: a 2-year-old girl in Texas who died in May during chelation for lead poisoning and a woman from Oregon who died three years ago while receiving chelation for clogged arteries.

Dr. Brown said that in each case, the blood calcium level was below 5 milligrams. Normal is between 7 and 9.

The correct chelation agent -- Calcium Disodium EDTA -- would not have pulled the calcium from the bloodstream, she said.
My first thought was that these comments seem to imply that you "pays your money and takes your choice." Either Dr. Kerry is a quack using potentially dangerous and unproven treatments for autism, or he's an incompetent doctor who, in trying to use a relatively safe but unproven and most likely ineffective treatment for autism, screwed it up, picked the wrong chelator, and thereby killed an innocent child. Personally, I wouldn't want to defend a doctor like that, regardless of which characterization is closer to the truth. Also, contrary to the claims of chelationists that no one has died undergoing chelation since the 1960's, Dr. Brown did point out two other examples of recent fatalities due to complications of chelation therapy. Ironically, one of the deaths was due to the use of chelation therapy for another disease for which it is not indicated and for which there is no evidence that it is effective (in fact, for which there is good evidence from randomized clinical trials that it is not any better than placebo), specifically coronary artery disease.

Dr. Brown herself continued:
She [Dr. Brown] said there have been no reputable medical trials demonstrating the effectiveness of chelation as a therapy for anything but lead poisoning. But if it were administered accurately, the procedure would be harmless.

She said it is well known within the medical community that Disodium EDTA should never be used as a chelation agent. She quoted from a 1985 CDC statement: "Only Calcium Disodium EDTA should be used. Disodium EDTA should never be used ... because it may induce fatal hypocalcemia, low calcium and tetany."

"There is no doubt that this was an unintended use of Disodium EDTA. No medical professional would ever have intended to give the child Disodium EDTA," Dr. Brown said.
Dr. Brown appears not to be living in the real world if she really thinks that no medical professional would ever have intended to give disodium EDTA.

Unfortunately, Dr. Brown did not emphasize nearly enough that there is no evidence from clinical trials or even a halfway decent case series that chelation therapy results in the improvement of autistic symptoms. None. Even if mercury poisoning does cause autism, there is no good physiologic or scientific reason to think that chelation would be likely to reverse the neurologic damage, which, having occurred many months to a few years before autism is usually diagnosed (because children get most of their vaccines before age 1 and most cases of autism are diagnosed between ages 2 to 5), would be unlikely to be reversed by "removal" of mercury at a time so distant from the original "insult." Finally, she didn't emphasize nearly enough that there is at present no good physiological reason or scientific reason to suspect that autism is caused by mercury from the preservatives in childhood vaccines in the first place, mainly because the present epidemiological evidence does not support a link and autism does not resemble the symptoms of mercury poisoning.

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.

I rather suspect that Dr. Brown is probably coming at this case as someone used to seeing chelation used for its intended medical purpose, to treat lead poisoning, an indication for which EDTA is effective and recommended. She also works for the CDC, one of the functions of which is to monitor rates of drug and treatment errors; so it is not surprising that she would emphasize this aspect, although she seems to be speculating about whether or not the wrong form of EDTA was used. (It seems that it never occurred to her that any doctor would misuse chelation or intentionally choose a less safe drug to do it with.) I could be wrong, but I also rather suspect that she is probably not well versed in the way that activists have claimed that mercury from vaccines cause autism and that chelation is the way to reverse the damage. Consequently, assuming she is correct, she is looking at this from purely a technical standpoint. In other words, she isn't really questioning that strongly why EDTA was being given to Tariq, just the form of EDTA that was administered (which, while safer than dicalcium disodium EDTA, is not without potential complications, such as renal failure and excessive anticoagulation). She doesn't seem to be grasping the big picture. Also, you don't get to be the head of a branch of the CDC or the NIH without being a bit of a politician; so likely by nature she is going to choose her words carefully.

Besides, as an expert in chelation therapy, Dr. Brown must know that EDTA has not been the treatment of choice for true cases of mercury poisoning for many years now. (She implicitly seemed to indicate as much when she said that the only indication for EDTA is to treat lead poisoning.) A drug called DMSA is and also has the added advantage over EDTA of being effective when given orally. As has been pointed out, in physiologic conditions in the body EDTA is a relatively weak chelator of mercury ions compared to the -SH group-containing proteins in the body's tissues. This means that, at equilibrium, mercury ions will remain preferentially bound to -SH group-containing tissue proteins in the body and EDTA will not be effective at competing for binding mercury. Effective mercury chelators contain -SH groups and have higher affinity for mercury than body tissues. Examples include compounds such as the previously mentioned 2,3-dimercaptosuccinic acid (DMSA) and 2,3-dimercaptopropane-1-sulfonate (DMPS, which is rarely used anymore because it is more toxic than DMSA). In comparison, EDTA is a relatively poor choice as a therapeutic agent to remove mercury from the body, even though in the test tube it binds mercury more avidly than calcium.

I wonder how chelation advocates will react to Dr. Brown's statements. No doubt they will desperately want to use them as tactical air support in absolving Dr. Kerry of medical misconduct, but it will gall them to do so. After all, to them the CDC is evil incarnate, the very source of the alleged "coverup" to suppress their pet idea that mercury from the preservative in childhood vaccines somehow causes autism. It can't be fun for them to have to point to a statement by the Chief of the Lead Poisoning Prevention Branch of the CDC to use as a shield for Dr. Kerry against discipline by the State Medical Board. Nonetheless, regardless of what Dr. Brown has said, the fact remains that Tariq was given a treatment for which at present there was no justifiable medical indication. Whether it was due to medical error in giving the treatment or not is irrelevant, because he shouldn't have been getting chelation therapy for autism to begin with.

He paid the price with his life.

More on this case:
  1. Drug Error, Not Chelation Therapy, Killed Boy, Expert Says, in which Kevin Leitch asks the question: How can a trained doctor who ostensibly was a chelationist mix up medications?
  2. What killed Abubakar? In the post and comments, Autism Diva explains that calcium disodium EDTA is not without potential complications, including cerebral edema.

37 example(s) of insolence returned:


At 1/19/2006 7:48 AM, Blogger John Stone said...

She also convientently ignores that the chelationist group also use Na2EDTA *preferentially* to CaEDTA ... simply because they say it "works better". There was a poll taken by Drs Renner and Barrett a few years ago of the "most dangerous" alt treatment. Chelation was the top of the list.

I used to listen to Clyde N. Shealy, MD, flog it on radio and his words were that it is "perfectly safe." http://www.normshealy.net/

 

At 1/19/2006 9:22 AM, Blogger clone3g said...

I forget, is CDC - Chelation Death Control?

 

At 1/19/2006 1:48 PM, Blogger Bartholomew Cubbins said...

I fail to see how someone who has performed chelation for real metal poisoning would not know about the autism chelation industry.

She just blew it, plain and simple. I'm constantly reminded that a graduate degree is obtained by people who really want graduate degrees. There's not a whole lot more involved. My graduate school cohort had some truly brilliant people, but it also had people, like me, who maybe aren't brilliant but just really love science and really really wanted the degree.

If some reporter would suddenly put a microphone in my face I'm sure to say something wacky or even completely false. Then I'd go perseverate about it until my wife would tell me to shutup and get over it.

 

At 1/20/2006 9:00 AM, Blogger FoundingDad said...

After reading this post, I visited Google and conducted a search desgined to find websites which are claimant that they are using Na2EDTA (thanks, John, for the abbreviation) for mercury chelation for autism. Is anyone surprised that I found quite a few? Here's one:

http://www.oralchelation.com/technical/IV1.html

"The death rate while undergoing intravenous chelation therapy? Zero!"

 

At 1/20/2006 9:43 AM, Blogger Kathleen Seidel said...

I, too, was more than a little dismayed at Dr. Brown's statement, especially "it is well known within the medical community that Disodium EDTA should never be used as a chelation agent." Dr. Brown here assumes that all practitioners performing chelation for any reason will be equally well-versed as she in the details and research regarding the procedure. The fact that "Disodium EDTA should never be used as a chelation agent" may be "well-known" by those practitioners with whom Dr. Brown is acquainted, but it is not necessarily "well-known" by those practitioners who have chosen to expand beyond their original specialty into the ever-more lucrative field of chelation for autism. (Dr. Kerry, for instance, is an ENT and allergist, NOT a toxicologist.) Anyone who takes a good look at the list of DAN! practitioners can see that they come from widely varying backgrounds. The doctors who are selling this stuff to parents of autistic children are NOT following rigorously established standards of practice; they are flying by the seat of their pants.

 

At 1/20/2006 12:51 PM, Anonymous Fore Sam said...

Questions, Dr Orac;
Would you advise me to lock my kid away for his own safety once he becomes too large and strong for me to restain so he doesn't harm himself or others?
Is being jailed in this manner for 60 to 80 years the best method of treating severe autism?
If chelation might help some kids avoid this prison sentence, wouldn't it be better if qualified MD's helped parents administer the chelation so somebody doesn't screw up like Dr Kerry?
If it was your son with severe autism, would you risk chelation or would you take your chances with the institutions which can only become worse with the overcrowding this epidemic is going to cause quite soon?

 

At 1/20/2006 2:11 PM, Blogger Do'C said...

Fore Sam asked, "If chelation might help some kids avoid this prison sentence, wouldn't it be better if qualified MD's helped parents administer the chelation so somebody doesn't screw up like Dr Kerry?"

Qualified MD's would be administering chelation based on an accepted treatment protocol dervived from valid clinical research!

 

At 1/20/2006 2:29 PM, Blogger clone3g said...

Fore Scam: wouldn't it be better if qualified MD's helped parents administer the chelation so somebody doesn't screw up like Dr Kerry?

You've overlooked the most obvious option here. Don't chelate at all. Your child hasn't been sentenced to life in prison OR death by injection. Any chelationist attempting to treat autism with chelation isn't a qualified MD. Do you get a commission for every parent you suck in?

Is it alright to make a living at autism as long as you don't make a killing?

 

At 1/21/2006 4:15 AM, Anonymous China called, John, they said they aren't having an epidemic said...

Abubakar wasn't some horrible unruly person, there's no reason to think he ever would have been. There's good reason to think that the "unruly" autistics have been abused very badly and so they don't trust people and are more likely to go defensive.

Still, even if a kid grew up under the most ideal conditions...he or she might lash out, but that doesn't have anything to do with being "mercury toxic" and chelation isn't going to help a kid not lash out.

Fore Shame admitted to hitting his autistic child, at least once, hopefully, just once... speaking of violent behavior and needing to be locked up...

 

At 1/21/2006 10:35 AM, Anonymous Fore Sam said...

Epidemic must really study my words since it's been a while since I mentioned someplace that I spanked my son after he stepped on his infant sister's head. Talk about taking things out of context.
It looks like 3 votes for the institution, mostly because the voters don't recognize the dangers to the kid himself and having nothing to do with violent tendencies.
Perhaps I missed the pop up window for my credit card information to gain an expert answer from Dr Orac.

 

At 1/21/2006 3:07 PM, Blogger Prometheus said...

Fore Sam uses the same distraction and smokescreen tactics on this blog as he does on other blogs.

The choice is not:

[A] Chelation

Or

[B] Prison

In fact, the choices are far more rich than that. Fore Sam must have some legal training, becuse he is using a ploy from the Basic Lawyers Playbook: take a complex situation and reduce it to a "yes or no" question.

I might point out that there are many, many autistic people who are not in institutions - Mark Rimland and Temple Grandin (PhD) come readily to mind.

Actually, I must admit that Dr. Grandin is technically in an institution - she is an Associate Professor at Colorado State University, an institution of higher learning.

Since neither of these two were ever chelated, that would seem to negate Fore Sam's argument that the choice is either chelation or prison.

Your witness...


Prometheus

 

At 1/21/2006 4:28 PM, Anonymous Fore Sam said...

Since Grandin is not a feces smearing, non-verbal, spinning in circles person in an apparently vegetative state who would walk in front of a car due to an inability to perceive danger like those who must be institutionalized, it seems Prometheus has assumed that all autistics will magically outgrow these symptoms and become high functioning or have their condition upgraded to Asperger's. As one who worked in an institution briefly, I can attest that this is not the case.
For the brand of autism described above, it IS A or B. I think you should wait and see if Doc Orac bestows his expertise upon us.

 

At 1/21/2006 4:45 PM, Blogger Orac said...

Alright, Fore Sam, if you insist on an answer, I'll try to give you one. I still don't understand exactly what it is you are asking, as you proceed from a false premise. You ask:

"If chelation might help some kids avoid this prison sentence, wouldn't it be better if qualified MD's helped parents administer the chelation so somebody doesn't screw up like Dr Kerry?"

There's your false premise right there. There is no good objective evidence that chelation helps autism or can prevent institutionalization of severely autistic children. Besides, these days, group home arrangements are quite possible.


"If it was your son with severe autism, would you risk chelation or would you take your chances with the institutions which can only become worse with the overcrowding this epidemic is going to cause quite soon?"

I would certainly not recommend chelation for anyone for anything other than the one indication for which it is known to be effective: Heavy metal toxicity documented by reliable standard medical laboratories that know how to to it correctly (in marked contrast to quack laboratories that find elevated mercury levels for nearly every sample sent them). It wouldn't matter if that that child were my own or anyone else's. If someone were doing a clinical trial of chelation with good methodology and actual science to back up the hypothesis being tested, I might say it's OK, but otherwise no. Chelation is good for only one thing, as far as the evidence shows. It is no better than placebo for cardiovascular disease, and there is no good evidence that it helps autism.

Since autism is not caused by heavy metal toxicity and chelation doesn't make it any better, whether you happen to estimate the risk of chelation as being low or high, its lack of efficacy means that it provides only risk and no potential benefit, particularly if it's done by IV. So why do it? Chelation therapy also has the added unfortunate effect of enriching quacks like Dr. Kerry and emptying out the bank accounts of desperate parents who can ill afford to be throwing their money away.

 

At 1/21/2006 7:08 PM, Anonymous Fore Sam said...

Orac;
So, for you, it's a matter of quibbling over what you'll accept as evidence. No good studies equals no proof. In spite of reports from parents that their kids are cured via chelation, you'd still advise throwing the kid on the scrap heap rather than taking a chance that those parents are right and giving the kid what is probably his only shot at improving.
You say that chelation is the proper treatment for heavy metal poisoning but that heavy metal poisoning does not cause autism. So, what could possibly be happening when autistic kids become normal from chelation?
Is there an explanation for kids who start talking shortly after being given Methyl B-12 that denies Deth's assertion that the reason they can't talk is because the mercury prevents them from making their own Methyl B-12?
Not being a scientist, I've just gone by what Deth and Cutler say while watching by son emerge from his vegetative state but if you have another explanation why these treatments have helped, I'd like to hear it so we can figure out how to cure all of these kids.

 

At 1/21/2006 9:14 PM, Blogger ballastexistenz said...

Vegetative? You call your own son "vegetative"? That's too disturbing to be believed. He's a human being, not a plant, and he may be aware that you're saying that about him. Any clue how that might make him feel?

Nobody "needs" to be institutionalized. The fact that institutions are presented as the only options for "some people" is a lack of understanding of the full situation.

And for reference, I'm one of those autistics who runs into the street and so forth, not because of an innate lack of awareness of danger, but because of an inability to apply that awareness in realtime. I do a number of other things too that are considered absolute "you must institutionalize" by a lot of parents. I am not currently institutionalized although I have been in the past (and it was not necessary then either). The difference is I happen to live somewhere where they have ways of keeping people outside of institutions. If those don't exist in your area, you must fight for them.

And read http://www.gettingthetruthout.org/ all the way through (can't stop in the middle) at some point. I am sure that person knows what it's like to be referred to as and treated like a vegetable within earshot of her. I am also sure that -- probably like me as well -- if you saw her on the street, you would believe she was a "vegetable" like your son. So go read it and see what you think. That you use such dehumanizing words on autistic people says a lot about our value to you.

And if you think I'm "different" because I can type, think again. I acquired consistent written language, I did not lose any autism in the process.

 

At 1/21/2006 11:18 PM, Anonymous Fore Sam said...

Ballast;
I was given the vegetative diagnosis by my son's doctor. He also offered to help me out when it came time to institutionalize him. I was told that would be my only option.
My son could no longer be described by anyone as being in a vegetative state which is different than being called a vegetable. He has emerged from that state thanks solely to chelation. If he doesn't keep improving, sadly, he will have to be put away where someone can look after him. He will not be able to care for himself in any way shape or form.
I read getting the truth out. It's a sham. Who wrote it, not the woman in the pictures. I worked in a place with kids just like that and worse. Those kids I worked with were just like my son before chelation. Setting any of them free would just be a death sentence. I yelled at the vice president who ran the place for doing nothing to improve their condition (chelation) and got fired. No loss for me but I see it as these kids last chance since their families had given up on them. These kids certainly had nothing to lose. They would graduate from that place at age 21 and be shipped somewhere else, never to see the light of day again. Will they be happy in their oblivious states and go straight to heaven (if that exists)? Is that OK when chelation might allow them to talk or type or read or feed themselves or toilet themselves or stop banging their heads on walls etc? After trying many times, I provoked one of them to shoot a basketball. I thought that was progress until one of the supervisors yelled at the kid and told him to sit back down. Custodial care is what they get and nobody does anything about it because the "experts" all agree that these kids are vegetables. They're allowed to bang their heads, bite themselves, run into walls at full speed and nobody stops them. They have the "knock out pills" like seroquel to keep them under wraps. Is that what you've been through Ballast?
I know my kid isn't a vegetable because he was normal for 10 months. I believed in him, not the doctors, and I'm proving I was right by chelating him and rejoicing in every slight improvement. I'll never understand why people like yourself opt to go through life with a disability when this new information about mercury and chelation might let you shed that disability. Just because nobody knew how to help you as a child doesn't mean you should keep listening to those people who tell you there is no cure. Doctors deny mercury and the drug companies deny mercury along with the politicians who are paid by the drug companies. That should tell you something. The doctors may not have been at fault for not knowing how much mercury they gave to kids via vaccinations but they know it know. They just choose to obfuscate the truth. Go look at Generation Rescue and help yourself.

 

At 1/22/2006 1:11 AM, Blogger Anne said...

John, I know the woman from getting the truth out in real life. She is as she is portrayed on the site. I have talked with her one on one (me speaking out loud and her typing unassisted) and she writes like the text on the site. Her ideas are consistent with those expressed on the site. I didn't see her write the pages of gettingthetruthout, but I have no doubt that she did.

It is possible that you have worked with kids who were like the woman from gettingthetruthout.org. You know that they were written off as hopeless. Maybe you thought they were oblivious to that, but maybe they weren't.

 

At 1/22/2006 1:32 AM, Anonymous Anonymous said...

Fore Sam:
If your doctor truly said your son is in a vegetative state, and if this is supported by appropriate brain testing, then the problem isn't autism...autistic people are not vegetative by definition. There are vegetative neurotypicals as well - probably far more, given the higher prevalence of allegedly neurotypical brains in society.

A great article exists somewhere on the Web that discusses the "real problem" - which in that author's opinion, was mental retardation. Yes, mentally retarded individuals need many supports and interventions. But the issue is not autism, it is mental retardation. Don't attack the person's autism, provide services for his/her mental retardation.

The same could be said of any other "comorbid" conditions of autism...communication issues, digestive issues...etc. Nothing exclusive to autism. All found extensively in the neurotypical world. The problem isn't the autism. The problem is the apraxia, reflux, etc.

I worry for your son. If you spent as much energy in bonding with him and scaffolding him as you do in spewing venom on the Internet, he might make amazing gains.

 

At 1/22/2006 2:48 AM, Blogger Kev said...

People - you're wasting your time 'debating' John. He doesn't want debate, he's just looking for someone to butt heads with.

I don't say this lightly but the only valid response to a person like John is pity for any and all kids he may have (of any neurology). Best to let John deal with his rage in the bunkers .

 

At 1/22/2006 3:28 AM, Anonymous China called again, John -- they say they have no autism epidemic said...

As I remember, For Shame, you said that you "belted" your autistic child when he stepped on his sister's head by accident. I thought that meant that you hit him with your hand very hard, but one supposes it could mean that you hit him with a belt.

We can only hope that you aren't in the habit of abusing your child and that "belting" was a poor choice of words.

The Chinese are saying that they don't have an epidemic of autistics and that mercury doesn't cause autism. They are asking why you keep saying that they are having an epidemic. Should I put them on hold while you think of an answer?

 

At 1/22/2006 7:21 AM, Anonymous Fore Sam said...

Anne;
The only hopeless autistic person is one whose caregivers refuse to see that mercury caused the autism and that chelation can cure it.
Anonymous;
A normal child does not all of a sudden become mentally retarded. Mercury causes them to appear that way.
Kev;
How do you pity a kid who is emerging from his mercury induced autism? The pity goes to those children with fathers like you who refuse to help them while their brains rot in the abyss of autism.
Chinaman;
You should get out more. I heard someplace that the Chinese givernment sometimes lies to their people.

 

At 1/22/2006 12:15 PM, Anonymous Anonymous said...

Fore Spam said: Is there an explanation for kids who start talking shortly after being given Methyl B-12 that denies Deth's assertion that the reason they can't talk is because the mercury prevents them from making their own Methyl B-12?

Mr. Best, You do know that your hero Andy Cutler doesn't like meB12 injections? Deth doesn't know a thing about what is going on inside a living breathing human being, let alone the B12 pathway in a person with autism. Maybe you can get Cutler & Deth to explain why methylcobalamin, the reagent of choice for making methylmercury, would help a mercury toxic individual. After all, everyone agrees that methylmercury is more toxic than ethyl or inorganic forms.

BTW, my child is non-verbal and smears feces on occasion, but he continues to make great progress without chelation, he is a wonderful child and a blessing.

From what you've said elsewhere, you are looking for a way to fix your child or put him in place where you won't have to deal with him anymore. How terribly inconvenient, for you, that your less than perfect child cuts into your golf game or time at the track.

Why don't you do everyone a favor and quit whining about the lousy hand you've been dealt and concentrate on being a responsible parent. Step up to the plate, and be a man!

Like Chris Rock said, "You're supposed to take care of your kids you ignorant %@#*&^%"

 

At 1/22/2006 12:59 PM, Anonymous Fore Sam said...

Anonymous;
You mixed up some of my words. I do not want to see my son locked away. That's why I'm addressing his mercury poisoning with science rather than asking the pseudoscience of psychology to fix it with bogus therapies. My feces smearing, non-verbal son is no longer a feces smearer thanks to chelation. He also is verbalizing now, albeit sporadically.
I went to bat for my kid by ignoring the bad advice I received from the profession that put the poison in his brain. Maybe you're the one who should start thinking for yourself and help your kid rather than leaving it up to the voodoo type therapies that purport to treat poisoning with teaching.
You don't call a teacher to treat a rattlesnake bite. In this case, the doctor and the rattlesnake are one and the same. I'm not whining at all, simply trying to educate those of you who can't figure this out for yourself. Do your kid a favor and call Generation Rescue to find the doctors who advise you with truth instead of sophistry.

 

At 1/22/2006 2:08 PM, Anonymous Anonymous said...

No, I didn't mix up your words. For you there are two choices. Fix him with cheatlation or lock him away. You made that very clear.

In addition to the B12, what other alternative therapies are you inflicting on your child? How can you be so certain that it's the chelation or that it wasn't just his year to stop smearing and start talking?

Thanks, but I do think for myself. So far there is ample evidence to suggest that you do not. If GR is helping so many kids why does JB need to advertise in the help wanted section for a recovered kid? Can't use yours (yet) or his (yet) or all of the other fully recovered kids in Cutlers Yahoo group.

Listen pal, if you are so convinced that your child is mercury toxic and chelation will cure him, knock yourself out. It's no business of mine. How is it that you are crusading to chelate every child with autism when your son is still autistic?

 

At 1/22/2006 3:32 PM, Anonymous Fore Sam said...

Anonymous;
I just refute quacks when I see them.
People who claim the autism epidemic was not caused by mercury are quacks. I hope that sinks in for you so you can give your kid the help he needs.
BTW, who's Chris Rock? Does he have a kid with autism? Is he just some goofball who likes to swear at people?

 

At 1/22/2006 4:24 PM, Anonymous Anonymous said...

Yeah, well, so far you've failed to present anything other than your extremist views so thanks for the offer of help but I'll stick with real doctors as opposed to all of the career jumping loons listed with DAN! So far all of the representatives from your mercury cult are unlikely to attract any intelligent parents, which, I suppose, is how you got involved. For the sake of autistic children and parents who may be considering chelation, please continue your crusade. I'm certain you've scared away quite a few by now.

 

At 1/22/2006 5:24 PM, Anonymous Fore Sam said...

Anonymous;
I salute the extremely intelligent parents who have already cured their children with chelation. They are certainly much more intelligent than me. I was too dumb to start chelating until my son was seven years old. If I had half a brain, he'd already be cured by now.
I'd say the parents with the cured kids are slightly more intelligent than the doctors who injected too much mercury into those kids. Is this starting to sink in yet?

 

At 1/22/2006 6:07 PM, Blogger clone3g said...

Hey John,
Where ya hiding all those intelligent parents? You know, the ones who are able to present some sort of evidence that mercury causes autism and can be cured with, DMSA, DMG, EDTA, B6, B12, vitamin A, TD-DMPS, LDN, eskimo oil, ALA, HBOT, etc, etc, etc....

 

At 1/22/2006 6:19 PM, Anonymous HCN said...

John Best posting as "Fore Sam" said "I salute the extremely intelligent parents who have already cured their children with chelation. "

Who are these people and where has it been verifiably documented. Not a bunch of anecdotes, but a good set of documentation that should at least include:

1) Blood, hair and urine levels of mercury before the start of chelation. The testing should include more than one lab to see what kind of error can occur (at least two hospital labs).

2) Standard developmental tests prior to the start of chelation, from checking motor skills to verbal skills to how they copy a drawing.

3) Age, height, weight and other standard measurments prior to start of chelation.

4) A precise accounting of kind of treatment and how much, PLUS if there is any other standard treatments (speech, OT/PT, schooling, etc).

5) Measuring all the things listed in the list Numbers 1, 2, and 3 --- about every 6 months.

This study should consist of a minimum of 50 kids, better more than that. I know of a study that involves middle school kids... I heard that it requires the kid and a parent to come in every 6 months for a one to two hour interview. According to their website it has involved over 600 families:
Developmental Pathways Project

Surely the folks promoting chelation can find the funding for that kind of rigor. When the results of that kind of study is done, then we will be convinced.

 

At 1/22/2006 8:26 PM, Anonymous Fore Sam said...

HCN; Are you for real?! After all these people have been through to bring their kids back from being poisoned, do you truly think any of them wish to comply with your idiotic standards to prove to YOU that their kid is now normal? If I get my normal child back, you'll never hear from me again. I'll tell ARI I got it done and will probably never wish to discuss autism again.

 

At 1/22/2006 8:41 PM, Anonymous Kassiane said...

I'm autistic.

I had heavy metal poisoning. Notice that's past tense.

The autism ISN'T past tense. No one who knows the first thing about autism will deny that.

I don't know any 'recovered' kids. I know quite a few damaged, physically or psychically, by chelation for a condition they didn't have.

But better a dead kid than an autistic one, right? That's the message that comes across loud and clear here.

 

At 1/22/2006 10:35 PM, Anonymous HCN said...

John Best posting as Fore Sam said "HCN; Are you for real?! After all these people have been through to bring their kids back from being poisoned, do you truly think any of them wish to comply with your idiotic standards to prove to YOU that their kid is now normal?"

Of course. The normal protocol for these kinds of studies is that all the medical services are paid for the investigators, and that includes giving the participants some cash each time they come in. This means the families will NOT pay anything, and could come out with some extra money. (much UNlike the Burzyski clinic where they make the PATIENTS pay to be part of their "study", or more accurately "scam").

This might make someone like Buttar oppose a study because it takes cash AWAY from him.

How about YOU tell us how we find out if the chelation is effective... and not with a bunch of anecdotes. The plural of anecdote is not data.

Personally I think the chelating DAN! folks are going to pull a "Doman/Delacato"... make all sorts of claims yet refuse to let their "miracle" cure come under scientific scrutiny because when the truth comes out it will be bad for business.

 

At 1/22/2006 10:42 PM, Anonymous Fore Sam said...

Kassiane;
Were you chelated? If not, the mercury poisoning is most likely not past tense. Did a blood test tell you it was gone?
Above, Orac admits that chelation is the proper treatment for heavy metal poisoning. Maybe he'll tell you where the metal might still reside even if it doesn't show up in the blood. I expect you'd believe him sooner than what I have to say.
How old are you? How long ago were you poisoned and how long since you rid yourself of it? Cutler says that many chelation protocols harm people. While I can't give advice on how to chelate, I always tell people to read what he has to say and decide for themselves whether to listen to a DAN doc or him.
I never said better dead than autistic although some people have lept to that assumption. I always say better to try to cure it than risk life in prison by doing nothing.

 

At 1/22/2006 10:54 PM, Blogger Orac said...

Fore Sam: "Above, Orac admits that chelation is the proper treatment for heavy metal poisoning."

Too bad autism isn't caused by heavy metal poisoning, meaning that chelation isn't the proper treatment for autism.

 

At 1/23/2006 12:18 AM, Anonymous HCN said...

This is a public service announcement for those wondering about research and autism. Despite John Best/Fore Sam and his protestations there are several universities offering to services for autistic children along with research.

With a bit of work with Google, there have been several interesting websites. First there is the main National Institute of Health's site showing the main centers of research (some of them have good websites, others do not... and there were some additional that were not listed):
The Collaborative Programs of Excellence in Autism

Here are the participant schools:
UC Davis
Yale University
Univ. of Washington
UC Los Angeles
Univ. of Utah
UC Irvine
Univ. of Texas in Houston
Univ. of Pittsburgh
Boston University
Univ. of Rochester (that is in Minnesota)

Here are some others I found that were not part of the NIH, but would be valuable places to seek help and information (remember universities are great places for low-cost therapy, I got speech therapy for a dysphasic... late talking... son for $10/hour at a university clinic):

Vanderbilt in Nashville, TN
Johns Hopkins Univ.
Arizona State Univ
... which has this link to a study of chelation and autism from a "Naturapathic College", which if it were legit would have all the pre-testing, testing during the study and post-testig:
Southern College of Naturapathic Medici e

 

At 1/23/2006 12:19 PM, Anonymous Fore Sam said...

Orac;
That's about what I expect from most MD's. Just keep denying that mercury causes autism but don't bother to advise the mercury poisoned woman that, even after the blood shows clear of mercury, it may still reside in the liver, kidneys, intestines abd brain. Advising her that it may still be in the brain without proper chelation could set you up towards agreeing that it could also casuse problems in the brain,maybe even mimicking the symptoms of autism.

 

At 1/27/2006 3:57 PM, Anonymous Ettina said...

"Only Calcium Disodium EDTA should be used. Disodium EDTA should never be used ... because it may induce fatal hypocalcemia, low calcium and tetany."

Hypo means low, calcemia means calcium. Ergo hypocalcemia means low calcium. She doesn't know what she's talking about.

On a more important subject:
When will people finally comprehend the phrase "skill scatter"? Skill scatter is classic in autistics. Skill scatter is why some autistics can't talk but can type, can't remember to refrain from running out in front of cars but can visualize 7D, and so forth.
Also, when will people realize that someone who really, truly is severely or profoundly delayed *does* think? It's obvious if you just watch them, forgetting about the stereotypes. When a kid with Angelman Syndrome (severe developmental delay, severe speech impairment, and other traits) indicates to his half-dressed mother that bras go on breasts, obviously he is thinking (that is a real-life example, by the way). How about a long-term survivor with Trisomy 13 (90% die in infancy, those who live are profoundly delayed) smiling and giggling when a family member plays a guitar? There's obviously *something* going on in her mind.
"If it was your son with severe autism, would you risk chelation or would you take your chances with the institutions which can only become worse with the overcrowding this epidemic is going to cause quite soon?"
False dichotomy. I would choose the third option: love and cherish my son and look after his needs rather than pass him off to overworked do-gooders who think they're helping people but really aren't (Amanda, is that a good description of institution staff?) I know several autistic people, who've experienced both, who'd rather be homeless than institutionalized (of course they'd rather not be either, but rather given the support they need to live out in the community while remaining themselves, including the aspects of themselves that are called a disease).
"Abubakar wasn't some horrible unruly person, there's no reason to think he ever would have been. There's good reason to think that the "unruly" autistics have been abused very badly and so they don't trust people and are more likely to go defensive."
Getting the Truth Out quotes a woman who said she lashed out in protest because people kept saying she'd eventually be in an institution and she didn't want that for herself. When I was being bullied (I'm a "high functioning" autistic, by the way) I would periodically go into fight-or-flight mode and try desperately to run away and fight desperately against anyone (usually a teacher) who tried to stop me.
"Fore Shame admitted to hitting his autistic child, at least once, hopefully, just once... speaking of violent behavior and needing to be locked up..."
Many parents could say that. Usually they are extremely stressed at the time and feel a lot of remorse for it, and it usually means they just need more support. Of course if it becomes a regular pattern, then they are no longer a good parent.
"I was given the vegetative diagnosis by my son's doctor. He also offered to help me out when it came time to institutionalize him. I was told that would be my only option."
Doctors often say things like that. I know of one parent who has a child with an 11q deletion who was told he'd never walk. But a study of a hundred or so 11q deletion kids found that the only kid older than 3 years who couldn't walk had a stroke and lost the ability to walk - even for that kid, the "xe'll never walk" prediction was untrue.
I wrote a webpage http://www.geocities.com/ettinashee/rare_syndrome_stereotype.html about that sort of thing.
This reminds me of a thing I said in my (unfinished, but available at http://www.geocities.com/ettinashee/Lenny_Schafer.html ) response to the Schafer Autism Report's special issue where they attacked Michelle Dawson:
"the introduction describes autistic rights advocates as a "pro-fester" group. They are not pro-fester, and neither are curebies. The pro-fester group are people like the teacher who said to Malcolm X as a child that he should become a carpenter rather than the lawyer he wished to become. They are the people who even know advise parents to institutionalise neurologically abnormal children, such as Doctor Huttenlocher, who advised Marisa Anders's parents to put her in a nursing home and not get attached to her, because Marisa, having Aicardi Syndrome, would be profoundly developmentally delayed and have difficult to control seizures and "would probably not live past her first birthday, and if she could accomplish that she would not live past puberty"(which is untrue, most Aicardi girls live past infancy and a number of them are teenagers or adults). Doctor Huttenlocher may have left the pro-fester group, since he later apologised to Marisa's parents after Marisa developed miningititis and only managed to survive due to the vigilance of her mother.

The pro-fester group are those who constantly ask Brette's mother whether she's sure she wants rescucitation for Brette whenever Brette gets seriously ill(Brette has lissencephaly, a neuronal migration disorder characterized by a smooth brain). Brette's mother, Karen Cockerill, says if Brette's NT brother Brady needed CPR and they said no rescucitation they "would lose our son to social services so fast our heads would spin"."

 

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