Saturday, January 07, 2006

THE RUSH TO JUDGMENT REVISITED

Soon after the death of Abubakar Tariq Nadama, I wrote about the rush to judgment that was going on by both sides of the chelation debate. There were those that wanted to blame the medical establishment for not fully supporting the admittedly experimental treatments many of us use. On the other side, many proclaimed that the tragedy proved that chelation -- in any form -- was inherently dangerous and anyone who said anything at all positive about such procedures was an accomplice to murder.

What I said back then was:
I still think we in the biomedical movement have a lot of questions to ask ourselves. But before we can even formulate those questions, we need to have more information. Was Abubakar’s death the result of an anaphylactic reaction, hypocalcemia, or some yet-to-be-thought-of reason? If hypocalcemia was the direct cause of death, was it brought on by a failure to replentish the child’s minerals, including calcium, with supplements, or did the doctor use Disodium EDTA rather than Calcium EDTA? Was the proper dosage used? Did the doctor perform all appropriate pre-procedure checks? Was the child properly monitored in between chelation procedures?

When we have the answer to all those questions, we’ll have a better idea of whether anyone needs to bear the blame for this tragedy. In the meantime, let’s try to respect a family that needs to mourn a child. Let’s all shelve our anger for a while. And let’s honor the Nadama family’s mourning by redoubling our own efforts to protect our own children. That includes learning all we can and being equal partners with our doctors.

Unfortunately, those questions remain.

In the last couple of days, the Pennsylvania media’s coverage of the release of findings by the Allegheny County Coroner concerning the Nadama case. The Pittsburgh Post-Gazette reported the following:
The manner of death of Abubakar Tariq Nadama, of Monroeville, has been listed as accidental while the investigation continues.

The findings released by the Butler County coroner’s office don't say whether the treatment itself is dangerous or the child died from the way the treatment was administered.

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.

The Allegheny County morgue conducted the autopsy on the child at the request of Butler County Coroner Bill Young.

“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.

Note that the coroner’s report does not state any opinions on the efficacy of EDTA chelation, nor does the media give any details about the manner in which Dr. Kerry performed the chelation prcedure.

Despite the lack of what I would consider pretty important information, a couple of bloggers I have respectfully disagreed with in the past, but both of whom I have a relatively cordial relationship with, have regrettably restarted the parade of anger.

Kevin Leitch
had this to say:
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.

Okay Kev, you’re on. I’m not sure whether I fit into any or all of those categories, or that those categories are even relevant. Talking about vaccines or thimerosal seems a little off-base because this young man was apparently being chelated for lead rather than mercury. Susceptibility to lead that can arguably aggravate autistic symptoms, may -- and I emphasize the word “may” -- be related to immunological problems that originated with mercury in vaccines, but the connection is indirect. Moreover, I do not advocate any particular therapy because each child’s condition is too unique for there to be a one-size-fits-all protocol. But inasmuch as I’m usually thrown into those groups, what the heck, I’ll issue the calls.

I hereby call for a complete investigation into the circumstances surrounding the treatment of Abubakar Tariq Nadama by Dr. Roy Kerry. We need to know exactly what was in that IV. We need to know what protocol was being followed. We need to know what other factors were present in the patient’s history that might bear on what happened, and whether Dr. Kerry paid enough attention to any such factors. Until we know, however, we’re all just talking though our hats.

And I’ll go even farther than asking Dr. Buttar to exercise care. I call upon every doctor who comes near our children to exercise the highest degree of care humanly possible. But that really has nothing to do with whether chelation should be considered as an acceptable protocol; rather, that call is for practitioners and parents to understand what needs to be done to perform any and all procedures, including chelation, safely.

The other blogger I mentioned was the renowned skeptic, Orac, who was, not surprisingly, more pointed in his post:
No doubt chelation advocates will cry foul, but it looks as though the autopsy definitely indicates that chelation therapy killed the boy. Given the circumstances of the boy’s death, it’s pretty obvious that the cause was almost certainly hypocalcemia due to EDTA leading to cardiac arrest. At the time, I was afraid that the autopsy findings might not reflect EDTA as the cause of death, mainly because deaths from sudden cardiac arrest due to acute electrolyte abnormalities don’t always produce concrete findings that let the pathologist pin down the exact cause. Such a result would have given the chelationists an “out” to claim that it wasn’t the EDTA that killed Tariq. Fortunately, that didn’t happen in this case. Too bad the parents are highly unlikely to sue Dr. Roy Kerry, the ENT doctor turned alternative medicine practitioner, because he wouldn’t have a prayer of winning a malpractice suit against him. (If doctors in this country can be sued and lose for bad outcomes that aren’t their fault, one hopes that someone like Dr. Kerry can be sued for bad outcomes that are his fault.) Maybe a big settlement or a big malpractice judgment against one (or, preferably more) of these autism chelationists would be what it would take to cool their love of this particular ineffective autism therapy somewhat.

I don’t want to argue semantics with Orac, but saying it was chelation that caused this death is way oversimplified. There are so many methods of chelation that the real issue is what was it about this particular instance of chelation that caused the problem.

Let’s focus on IV-EDTA. Among those practitioners using it to chelate for lead in autistic patients, there is a difference in opinion as to whether a push or a more gradual drip is more appropriate. But the one thing nearly every doctor performing the procedure agrees on is that Calcium EDTA should be used rather than Disodium EDTA. This is not exactly news, it has long been known that using the latter can lead to fatal hypocalcemia.

There have been many unverified rumors that Dr. Kerry was using Disodium EDTA rather than Calcium EDTA. I hate to rely on rumors, and with various legal and administrative investigations pending, the facts are not likely to be made public any time soon. That being said, the use of the wrong substance is the most obvious explanation for what happened.

If Dr. Kerry did indeed use Disodium EDTA, the problem is not with the protocol; the problem is a doctor who didn’t follow the protocol. It would be a matter of negligence -- medical malpractice in other words -- rather than a procedure being unreasonably dangerous per se.

If Dr. Kerry made such a basic error as using Disodium EDTA rather than Calcium EDTA, he would, as Orac says, be subject to a lawsuit. (It may be a little off-topic, but I can’t help but observe that Orac’s reasoning that liability concerns may help deter malpractice is similar to the best argument against eliminating liability for vaccine manufacturers.) The choice to take private legal action, however, lies with the Nadama family, and not with Orac or me. Discussing the relative pros and cons of filing a lawsuit would take far too long. I can only trust that Dr. and Mrs. Nadama will make the right choice for their family.

Whenever we discuss personal experiences that lead us to believe in a connection to particular toxic insults, like thimerosal in vaccines, live viruses, or lead exposure and the onset of autism, or when we relate positive experiences regarding biomedical treatments, the response is often that the plural of anecdote is not evidence. It’s funny how the same people that shout out that mantra are now willing to base their argument about the safety of a class of procedures on a single incident.

In an exchange of emails I had today with our friend, Mary Webster, she raised an analogous situation of a transplant surgeon who failed to compare the blood types of the recipient and donor. That failure was fatal to the patient. The failure to follow the simplest and most basic of procedures does not mean that organ transplantation should not be preformed in appropriate cases, but it does underline the need to follow all the right procedures. I think that’s a pretty apt analogy.

I truly hope that the whole story will come out someday, and that we can all learn something. For now, though, we should all resist the urge to pass judgment.

23 Comments:

Anonymous María Luján said...

Hi Wade
Congratulations for such moderate and sensate comment. It is extremely unfortunate for me how the tragedy of this family is being mistreated. I do think that moderation and respect for their pain is our duty.
Safe procedures done under high standards and following safe protocols are what we all want for our children. I support your proposal to avoid rush to judgement until we know more.
María Luján

1/8/06, 7:04 AM  
Anonymous Shawn said...

We have a few answers and more questions.

I'd also like to know more. It's the only way to learn.

Shawn

1/8/06, 9:32 PM  
Blogger Bartholomew Cubbins said...

"I hereby call for a complete investigation into the circumstances surrounding the treatment of Abubakar Tariq Nadama by Dr. Roy Kerry."

I think you've been beat to the punch.

"I call upon every doctor who comes near our children to exercise the highest degree of care humanly possible."

Now that's talented oration, are you related to Huey Long? This is sincere praise, you must have a real talent in the courtroom. I'm still working on "ums". :-(

"I don’t want to argue semantics with Orac, but saying it was chelation that caused this death is way oversimplified."
No, add a chelating agent to a system, you bind an array of ligands depending on the activity of each ligand, the activity of the chelator, and time available for the reaction. It is that simple.

"There are so many methods of chelation that the real issue is what was it about this particular instance of chelation that caused the problem."
And this differs from quibbling, how?

"I hate to rely on rumors,"
But then you launch into an analogy (transplants) that means absolutely nothing unless you take the Na vs Ca rumor to be bible truth.

More on rumors:
"Talking about vaccines or thimerosal seems a little off-base because this young man was apparently being chelated for lead rather than mercury."

"the response is often that the plural of anecdote is not evidence. It’s funny how the same people that shout out that mantra are now willing to base their argument about the safety of a class of procedures on a single incident."

I think the problem here is that a group of people are convinced that no convincing evidence exists for a mercury/autism link and that any extreme biomedical procedure that assumes the link to be valid and is based upon treating that link is not advisable.

1/8/06, 10:58 PM  
Blogger Kristina Chew said...

I think (andgreetings, commenter whose nom-de-net stems from a Dr. Seuss book) that more needs to be known about Abubakar Tariq Nadama himself. What was his own biomedical make-up? What was his birth history? What about his families' biomedical backgrounds? What environmental or hormonal agents might have sent his young system into imbalance?

It's million-billion dollar question and if we could answer it, I guess we would know what to do for our children, rather than so much guessing--and keeping ourselves informed, and hoping.

As for relations to Senator Long, I have borrowed one of his monikers for my own boy, in The Kingfish (#23).

1/9/06, 12:12 AM  
Blogger Kev said...

There are two main issues for me:

Talking about vaccines or thimerosal seems a little off-base because this young man was apparently being chelated for lead rather than mercury.

Thats rather disingenuous. If the family wanted that treatment they could get it here. The reality as opposed to the literality is that they had to go to the US because its one of the few places its easy to buy treatment no matter youur actual condition. He was treated in an effort to cure his autism.

Secondly, as you yourself highlight Wade, we don't know the exact mechanisms at play here. And yet the likes of Rashid Buttar are happy to plough on regardless. To me thats akin to sticking your head in a lions mouth and hoping not to get bitten.

And angry? You bet. It simply amazes me that more people aren't.

1/9/06, 1:52 AM  
Anonymous María Luján said...

Hi Kev
I assure you that many of us are very angry with all the situation and very concerned and emphatic with this child´s family. But also we have so many reasons to be angry that the only way to manage it properly is to try to learn as much as possible of all this and respect this family´s pain. The fact that the angry is not loudly be known does not imply that we are not touched or we do not care. The way this caring is felt/expressed can be different than others.

You say
The reality as opposed to the literality is that they had to go to the US because its one of the few places its easy to buy treatment no matter youur actual condition. He was treated in an effort to cure his autism.

Unfortunately the reality is that mainstreamed doctors tell to any family with an autistic child the worst of all possible scenarios. Receiving the diagnosis is one of the worst experiences one family can have because of the messages you receive and the lack of options, many times. This is another point, from many, to be angry with as it is the offering of potentially dangerous treatments because of supposed lack of training in.
Again, to make assumptions of any kind is not respectful for this family for me. We know nothing about the whys or hows of their decissions. I understand your concern about the message but there are so many things involved here that I think no easy conclussions can be done with the information we know.

Sincerely
María Luján

1/9/06, 8:57 AM  
Blogger Wade Rankin said...

You are most welcome here, Master Cubbins (he of so many hats),

Any relation to Huey is highly unlikely as I am an adopted Louisianian rather than native. Even so, the comparison is not altogether accurate, as Huey was a bit more plain-spoken, and he would never have argued that any situation was complex. He was the King, or rather the Kingfish, of Oversimplification.

And, contrary to what you are saying, oversimplification is a problem with this argument. Any acceptable medical procedure (and IV EDTA is acceptable if there is evidence of lead exposure) carries the risk of bad human controls. Saying that chelation killed Tariq may be technically true, but it is equally true to say that transplant surgery killed the patient in the analogy I drew. The question we don’t have an answer for yet is whether chelation would have killed this child but for the negligence of the physician. We can’t answer that question until we know exactly what he did. And given the ongoing investigations, I am guessing we won’t know exactly what Dr. Kerry did for quite some time.

I am not trying to advocate chelation, or any particular method of chelation, as a magical cure. All I am saying is that we should all refrain from making definitive statements until we know the full story. Saying that any form of chelation are inherently deadly -- and there are differences in the chemical natures of the various chelating agents and different risks for the different methods of chelating -- based on this incident is every bit as wrong as overgeneralizing autism and saying it is always a misdiagnosis for mercury poisoning! What disturbs me is that the overgeneralized statements about the dangers of chelation are not being made by stupid people. You, Kev, and Orac are highly intelligent guys who should know better.

As for my reliance on rumors, believe me, there are a lot of other rumors about this incident that, if true, would be equally relevant to the discussion. The only reason I mention the rumor about the use of Disodium EDTA, is that Orac has stated on multiple occasions that he believes the death was brought on by hypocalcemia. If that is true (and I’m pretty sure I kept using the word “if”), the most probable explanation is that Disodium EDTA was used rather than Calcium EDTA, a tragic mistake.

And Kev,

I don’t know Dr. and Mrs. Nadama, so I don’t know why they chose to have treatment here rather than the U.K. I suspect, however, that they were over here because it is easier to find physicians who are able to supervise a complete range of biomedical treatments. Chelation, whether for mercury or lead, is not something to be done in isolation. Protocols are so individualized, depending on the specific clinical and biochemical situation of each child, it is impossible to know everything the Nadamas were doing. Yes, I believe that vaccines and mercury have much to do with the development of autism in a huge number of children, but I also believe that other environmental insults , including lead exposure, can be a causative factor. I don’t know what triggered autism for Abubakar Tariq Nadama. I don’t know what Dr. and Mrs. Nadama thought triggered autism in their son. All I know is they were seeking biomedical solutions to problems they associated with their son’s autism, and something went terribly wrong.

Not knowing Dr. Buttar, I can’t speak for him. I have read in the same internet sources as you that he is using IV EDTA. I don’t really know what protocol he’s using. I know there are other physicians, including some I know more about, who are also using IV EDTA as part of their treatment for some individuals. When one considers that there are many years of successful and safe use of IV EDTA for lead chelation, I don’t think this can be called reckless per se. We can only hope that whatever physicians will use IV EDTA will exercise that highest degree of care we both call for. And just as important, we can only hope that parents will educate themselves on every aspect of any procedure their doctor recommends and that they ask a lot of questions. Parents need to assure themselves that: (a) there is a valid reason the doctor is recommending the procedure; (b) the procedure is capable of being performed with a minimum risk; and (c) the doctor is capable of performing the procedure with a minimum risk.

Yes, Kev, I am angry too. I am angry about a lot of things, including what happened to the Nadama family. With respect to the tragic death of this young man, though, I want to know where to direct that anger. Blind anger is the most unproductive of all emotions.

1/9/06, 12:49 PM  
Blogger Interverbal said...

Wade,

Many people have made good points on about this little boy's death. not many have done so while avoiding open disrespect for those who would disagree.

This death hurt a lot of people (not just his parents) and it hurts them like Hell. The very genuine anger over it is titantic.

I oppose your conclusions, but I thank you for showing respect while expressing disagreement.

-Jonathan Semetko

1/9/06, 4:25 PM  
Blogger Wade Rankin said...

Thank you for your kind words, Jonathan. There is anger and hurt over this death on both sides of the biomedical debate. Fortunately, there are people of good will on both sides who are interested in having a reasonable discussion without undue rancor. I want to make sure I emphasize that Kev and Orac have always been that way in his discussions with me. And I have noted the reasonable tone in your comments at Kev's blog and here. I thank everyone who has commented on this post thus far for doing so in the right spirit. I think we would do a great disservice to the Nadama family if we acted any other way.

1/9/06, 8:16 PM  
Blogger Kev said...

Saying that any form of chelation are inherently deadly ---- based on this incident is every bit as wrong as overgeneralizing autism and saying it is always a misdiagnosis for mercury poisoning!

Absolutely true. Which is why I did not claim that. I said that chelation is inherently dangerous - it is. We're talking about a process that fundementally alters the chemical amd mineral makeup of a body. I also said in this case it was deadly as it was. It would be absurd for me to claim however, that chelation is always deadly.

Maria (sorry about the accented 'a'), you say:

The fact that the angry is not loudly be known does not imply that we are not touched or we do not care. The way this caring is felt/expressed can be different than others.

Of course. I'm not claiming I or Orac or Camille or anyone else has the monopoly on anger but it is incredibly frustrating to express doubts and fears for months on end and to be laughed at and told one is silly for harbouring such doubts and then to be told after your doubts are proved to have substance that this situation is not important enough to talk about with passion.

Unfortunately the reality is that mainstreamed doctors tell to any family with an autistic child the worst of all possible scenarios. Receiving the diagnosis is one of the worst experiences one family can have because of the messages you receive and the lack of options, many times.

I entirely agree but at some point you have to make a responsible choice. The fact is that none of the Doctors who prescribe chelation know what the long (or short) term effects are on autistic children. It is the utter needlessness of this death coupled with the willing ignorance of these Doctors to keep using a treatment that can be very very harmful and which, as of the present state of medical science, is totally unecessary that makes me personally so angry. Only last week Dan Olmsted was pushing Gold salts as a chelator. No mention was made of their status as 'chelators of the last resort' because of how dangerous they are. No mention was made that they are only really used in circumstances deemed to be life threatening because of how dangerous they are.

And so on we go. Even though Rashid Buttar must know that EDTA has been replaced as the 'gold standard' by the much safer DMSA and despite the fact that we are still in the dark about the exact role EDTA played in this death, I'm betting he's still using it.

Why did this death happen? Because chelation is an experimental treatment of autism. No safety or efficacy trials have ever been conducted on any form of chelation for autism and hence any treatment that has evolved up to now is being conducted on a trial and error basis!. It doesn't matter how careful or how contientious these Docs are - this was bound to happen.

1/10/06, 6:50 AM  
Blogger Wade Rankin said...

Kev said:

“The fact is that none of the Doctors who prescribe chelation know what the long (or short) term effects are on autistic children.”

EDTA has been used for quite some time, albeit not for autistic children. If, as you claim, the lead levels in our children is totally unrelated to autism, the fact that our kids are autistic should not matter.

“Only last week Dan Olmsted was pushing Gold salts as a chelator.”

Go back and read Mr. Olmstead’s report. I did not interpret it to mean he thought gold salts were a viable treatment option. Indeed, he quoted Boyd Haley as saying parents should NOT try it. The reason to mention and investigate gold salts is to determine whether there is an appreciable impact on the biochemical situation, and, if so, why. Then the trick is to determine how to achieve that effect in a clinically safe manner. I don’t know any parents that are going out and demanding treatment with gold salts.

“. . . EDTA has been replaced as the 'gold standard' by the much safer DMSA.”

First, I am happy that you, at least Kev, recognize there is a difference in the various chelating agents. Most of the criticism I have seen arising out of the Nadama tragedy tries to state that this one incident proves that all chelation -- using any chelating agent -- is deadly. The logical disconnect there is self-evident. As to the use of EDTA rather than DMSA (and this is purely anecdotal based on many discussions with other parents), many children do not tolerate DMSA due to gastrointestinal irritation associated with its use. Apparently some doctors also feel IV-EDTA does a better job of actually getting rid of lead than DMSA taken either orally or transdermally. I do not advocate any particular method, nor do I even advocate chelation as a cure all for everyone. But it may be an appropriate measure in individual cases, and that is a matter for a decision jointly made by doctors and parents. And I repeat and emphasize (in fact, let me shout this out to one and all): PARENTS MUST EDUCATE THEMSELVES SO THEY TRULY UNDERSTAND THE RISKS ASSOCIATED WITH ANY PROCEDURE, AS WELL AS WHETHER THE NEED FOR THE PROCEDURE HAS BEEN ESTABLISHED!!!!!

And finally:

“No safety or efficacy trials have ever been conducted on any form of chelation for autism and hence any treatment that has evolved up to now is being conducted on a trial and error basis!”

Again, the relative safety of various forms of chelation has already been established with non-autistic patients. As for efficacy, I agree that we need trials to determine whether we are actually doing any good. I understand that such trials may be underway by at least one group of researchers, and I would hope by others as well. Until we have published studies proving efficacy, parents should take into account that they are using an experimental procedure as they weigh risks against potential benefits. Again, parents must not should but must educate themselves sufficiently to make a determination together with their doctor.

1/10/06, 7:39 AM  
Anonymous María Luján said...

Hi Kev
Thank you for your comments about my post.
I think that one of the worst tendencies for me is the tendency for generalization and induction that over and over I see from both sides of the controversy. The concerns you/Orac /Camille expressed at due time were the same that I had. I am in disagreement with the tone and the conclussions in general. I understand how you can felt. But unfortunately the discussion evolves almost ever to a scalating exchange where empathy is absent. and the result is only more anger, because of the tone the exchange has been stablished. There is no agreement in mutual respect in disagreement many times so passion is another form to express the anger without space to reflexion or the opportunity to other aspects to be considered, that requires calm.
Kev, I am glad you understand that I propose mutual respect in disagreement, that I agree is difficult to get in a so important issue for us.
You say
I said that chelation is inherently dangerous - it is. We're talking about a process that fundamentally alters the chemical amd mineral makeup of a body. I also said in this case it was deadly as it was. It would be absurd for me to claim however, that chelation is always deadly.

Well, I have the need to complete the idea. If chelation is done not properly, IF chelation is done without previous proper testing or care, If chelation is done without all the testing needed during the process, If chelation is done in a wrong way ( chelator, procedure, etc) so is potentially dangerous for me. Chelation is a procedure for heavy metal poisoning, not autism and in this way I agree with you in the need of proper diagnosis.
You say
I entirely agree but at some point you have to make a responsible choice.

Absolutely, but for this you must have access to a lot of information and medical discussion. Here, responsible choice has evolve to a duty to be actualized with knowledge of all the information available about what to test as coetiologies when ASD diagnosis is done, safety of previous tests, safety and pharmacology of chelators and proper dosing and protocols and long terms concerns. Having the privilege of high education, I and many others have the possibility of access to useful information. How parents have the access to this information? How parents can discuss the alternatives? Why in general they are so mistreated when their choices are based in the information they can get and the choices do not fit with scientific considerations they can be not aware of? Generally, at first, you trust the doctor and after you begin your own research at the best of your knowledge. Families in general go from one doctor, diagnosing ASD, to another doctor treating ASD, sometimes with some biomedical approach or not.Responsible choice for many families depends on the information they can have . And their efforts could be the most they can. Responsible choice has evolved an euphemism to say you did not do my choice so your choice is irresponsable many times. I think that the main point is how the medical community in general manages ASD, mainstreamed and biomedical doctors.Parents must be involved at the level to become experts in our children because mainstreamed doctors offer no options and you must be aware of the safety of your options when contact biomedical doctors and demand for safe procedures.

You say
The fact is that none of the Doctors who prescribe chelation know what the long (or short) term effects are on autistic children. It is the utter needlessness of this death coupled with the willing ignorance of these Doctors to keep using a treatment that can be very very harmful and which, as of the present state of medical science, is totally unecessary that makes me personally so angry.

I understand you and , if it is demonstrated that the doctor involved was responsible of malpractice, this must be VERY seriously considered. BUT the protocol in this case and if this is the case, was NOT properly done. In mainstreamed medicine, you know everyday that there are a lot of drugs being used that are not known in the long term use for children. Think in Ritalin or Prozac. This does not imply that the same mistake
can be done here in term of long-term , please. I think that safety is a MUST.
Kev, I think that we can not generalize. There are 20 ways to make chelation with a LOT of different chelators, with a lot of knowledge-and evolving-in the use of non-autistics people. I think we must separate doctors using treatments of the science behind chelation as procedure. Chelation has a lot of support from published scientific science for heavy metal poisoning. Proper Procedure depends on the doctor who apply it. You have many other ways to do chelation, IF the child is demonstrated to be heavy metals poisoned than the specific used in this case. My concerns are about the use of not-safe protocols minimizing the potential risks for parents. So, I will complete your proposal if you allow me. Responsible and informed choice. But not all doctors using chelation use this protocol and many are aware of the risks and of the nature of published scientific literature and they point the need of more studies. Safety, efficacy and proper use are all things to consider when you want to do a responsible and informed choice.
ASD is a world of familiar choices about our children. I think that I can discuss the procedures but not familiar choices. I think that the focus to criticise must be how doctors apply procedures and not the families who choose them . If more coherent, complete and scientific information is available to parents, all are going to be in position to demand for safety and we will choose enough informed. In this sense, I also think that responsible and informed choices includes a lot of options that obviously can be different than mine.
As Wade says
“Until we have published studies proving efficacy, parents should take into account that they are using an experimental procedure as they weigh risks against potential benefits. Again, parents must not should but must educate themselves sufficiently to make a determination together with their doctor”.
Glad to exchange opinions with you.
Wade, sorry by the long post.
María Luján

1/10/06, 10:28 AM  
Blogger SquareGirl said...

I often say that people have what I like to refer to as "look over there" syndrome, as we tend to point to a convenient culprit when something happens, which allows us to avoid looking at ALL of the other factors that may be involved in a complex situation. Chelation, Refridgerator Mothers, Genetics, it seems to be a common theme in this field.

1/10/06, 11:12 PM  
Anonymous Hates the lies in California said...

"PARENTS MUST EDUCATE THEMSELVES SO THEY TRULY UNDERSTAND THE RISKS ASSOCIATED WITH ANY PROCEDURE, AS WELL AS WHETHER THE NEED FOR THE PROCEDURE HAS BEEN ESTABLISHED!!!!!"

If the parents educated themselves they would know that they are being lied to by Dr. Buttar and Dr. Bradstreet. I know of a couple who knew they were being lied to by Bradstreet while they sat in his clinic in Florida. They went home and sent him a urine sample from a normal person. Bradstreet reported that the kid was high in all the things he sees autistic kids high in, and low in everything he sees autistic kids low in, and offered to cure it all with his snakeoil treatments.

If the parents took a little time they'd see that they are being tricked with provoked metals testing. This is a classic trick used by con men.

Real doctors don't chelate first to "provoke" the level.

But Buttar does, all or nearly all of the DAN! docs do.
It's blatant chicanery and you are falling for it and helping to assuage parents concerns about it, from my point of view, Mr. Rankin. The labs are known to give false readings and poor readings.

But you just don't care.

I think you like your little delusion. I really think you like to be lied to, because all it would take is a tiny bit of research to see you are all being bamboozled.

There is no reason to think that your kids are high in mercury or that they can't excrete mercury. You just want to believe that the DAN! docs are the good guys and that they know what they are talking about, that GOD is on your side and that all y'all couldn't be dead wrong because you love your kids.

But you are dead wrong. There's never a reason to chelate you child based on what a DAN! doc or DD lab would tell you.

Chelation can not improve autism. Chelation can not improve brain function in children who have brain damage from lead. This is known. They might chelate a kid to give him better phyiscal health if the lead levels were high enough, but they don't do it to fix the brain damage, because it doesn't fix the brain damage.

You people look really ridiculous. You won't listen to the science that disproves the garbage you are paing for. I'm sorry if that's mean, but it's true. You are really making a hideous mistake and if you say that chelation can help an autistic child you leave his parents open to another debacle like Abubabkar's death.

Sure you can use your sham chelators that are "gentle" but there's always someone like Dr. Mielke who is saying, "for those of you who want to speed up the curing of your child I offer IV chelation"

Who the heck wouldn't want to speed up the curing of their child?

There will be more dead children at the hands of DAN! doctors. Mark my words, Mr. Rankin.

I predicted, but not just me, that a child would die from chelation. I was told it was safe. Abubakar died and I was told that it was just one death, that chelation is safe.

Nobody cares. If you cared you'd stop buying the DAN! garbage and get real. You are all complicit if you keep saying that chelation has anything to offer autistics and if you keep buy the lying lab tests and offer them as proof that your kids are "mercury toxic". They aren't mercury toxic, Mr. Rankin. NOT mercury toxic. Not a bit, not at all.

1/11/06, 3:08 AM  
Anonymous María Luján said...

Mr Hates the lies

Unfortunately you jump to
aggresive and non-related criticism without reading the statements of our posts.
It is very surprising to me how fast judgement is done without interest in why other people, like me, have the ideas presented or in what is based.
You say
There is no reason to think that your kids are high in mercury or that they can't excrete mercury.
...
But you just don't care.


What are you based on to have an opinion about my son or my care or why I think my son was Hg toxic?
You know nothing about me to say this or in fact, anything like you say in your post.

You say
I really think you like to be lied to, because all it would take is a tiny bit of research to see you are all being bamboozled.

No, I really like research and research based decissions so I research continuously about ASD.Having a strong background in Chemistry helps a lot, I assure you. There are so much we do not know about ASD.


You people look really ridiculous. You won't listen to the science that disproves the garbage you are paing for.

I appreciate too much science to not answer. I am not paying for any garbage, believe it or not.
Again, what do you know about my decissions to have this rush to judgement? I do not understand you. Blind anger is never productive.

You say
You are all complicit if you keep saying that chelation has anything to offer autistics and if you keep buy the lying lab tests and offer them as proof that your kids are "mercury toxic".

Please tell me when I did these statements.
All your post is about your anger about this situation, but it is not related to my post. You rush to be aggresive without knowledge about the background behind the statements or reading with care what is saying about.

María Luján

1/11/06, 5:44 AM  
Blogger Wade Rankin said...

Maria,

I think your only mistake is in addressing your last comment to "Mr. hates the lies." I believe we are reading the comments of "Ms. Hates the lies." She usually comments under her real name, but it's much easier to hide behind an alias when one is throwing out unsubstantiated stories. my only surpise in her comment is the reference to a urine sample from "a normal person." Geeze, I don't even phrase it like that.

You see, Ms. Hates couldn't argue with a recommendation that parents educate themselves rather than merely rely on what a doctor -- even a DAN! doctor -- is saying. But she couldn't resist saying something, so she dressed up her usual rant about how we're all so stupid that we'll believe whatever doctors and labs tell us.

I apologize to one and all for being less than polite in this comment, but it gets a little tiresome reading the same thing over and over again from someone who is intelligent enough to listen and respond to an opposing veiwpoint, but who is either too stubborn or too lazy to do so.

1/11/06, 3:15 PM  
Anonymous someoldanonposter said...

To: Wade
In re: hates the lies in Calif

The last time you accused/suspected an anon poster of being a certain Ms. you were completely and totally WRONG.

I know because it was me whom you accused ... of, well, not being me. You found it necessary that I announce I was, in fact, NOT a particular someone before you would even begin to ... let me be me.

All I'm sayin' is you are not always correct in your assumptions. You were incorrect about me.

Later.

1/11/06, 7:31 PM  
Blogger Wade Rankin said...

Okay, anon,

Last time we went around like this, I took your word for who you weren’t, and I accepted my probable mistake. Being a little more savvy in the net scheme of things this time, I relied not just on a hard-to-miss- style, but I checked out where that comment came from. Also, something about the purported story from Florida sounded a little familiar, and in about 30 seconds of time I was able to find an earlier posting by the person I suspect of leaving that comment, in which the same story was told in almost the same exact words. Now that is not absolute proof, but to go any further in trying to prove who an anonymous commenter is would be ... well, a little creepy. I’m certain enough to state a belief without naming the individual.

Regardless of the identity of the commenter, the content is the same tedious "stuff" we hear from someone who refuses to even admit that they might not know everything there is to know. And that deserved a retort of some kind.

I really don’t want to waste a lot of time debating this. Ms. Hate’s (an apt moniker) comment was merely tiresome. Had it been offensive the comment would have been moderated, a step I have never found necessary.

1/11/06, 8:11 PM  
Anonymous someoldanonposter said...

I guess Wade that I never quite got over the feeling of being assumed guilty and then having to try to plead and prove my innocence. It didn't feel very good and I left here still feeling falsely accused.

1/11/06, 9:10 PM  
Blogger Wade Rankin said...

Anon,

I recall apologizing then, and I certainly repeat my apology for making a mistake. I am surprised that you would consider being mistaken for a fairly well-known and respected member of the autism community to be an "accusation," and I am distressed that I caused any offense. Perhaps I should not have assumed that she had your respect. (As angry as she makes me sometimes, she still has my respect.) Again, I am sorry.

1/12/06, 6:34 AM  
Anonymous someoldanonposter said...

Heavens, Wade, I am not going to go on with you about this ad nauseum especially when you have now completely misrepresented me --AGAIN!!!

I admire AD. I was actually taken aback that you thought I was AD and then kept PUSHING me about it.

You would not RELENT until I stated (per your request) something to the effect: "I am not AD." I think that was into my third post on the matter.

My point in all this was you "rushed to judgment" in my case then, in thinking that the only one who could possibly disagree with you so angrily was AD.

The only reason I posted here, at that time, was the convo ended on the blog we were on and I was upset about what you had posted on that particular blog. But I won't be posting here again - you have now once again "rushed to judgment".

Ciao,
Bebe

/likes AD and likes BioMEDICAL too

1/12/06, 10:22 AM  
Blogger Wade Rankin said...

Bebe (thanks for the name),

I really did not want to see this thread sidetracked, but I hate being misrepresented, and I need to make sure the record is clear.. After your latest comment, I went back to check what actually transpired in our previous encounter.

After a very pointed critique of my earlier post, in which you made incorrect assumptions about my positions -- just as a certain blogger has been known to do -- I posted a reply, a small part of which responded to your reference to that blogger. I incorrectly jumped to the conclusion that you were that blogger (I did not bother to check the source of your comment before jumping to that conclusion). Your response was to wonder why I would use the term “your blog” and to question if I thought you were that person, but you did not clearly state that you were not that person. My response to that comment, which covered more subjects than that one issue of your identity, included the following:

“. . . I did use the term ‘your blog’ as I had reason to believe you were Ms. Clark. If I am wrong, I apologize, but I can’t help but notice that you did not say I was wrong in that belief.”

You then clarified that you were not Ms. Clark, and further made some statements that showed a far more open mind than I am used to hearing from Ms. Clark. Although you used the word “disconcerting” at one point, you noted that you were “just perplexed” by my error.

My response to that one point, and again, this is excerpted from a comment that addressed far more substantive issues you raised, was:

“I stand corrected on your ‘identity,” and can only assume that you are not insulted by my error. Again, I apologize for making that mistake; I should know better than to jump to conclusions.”

Now, I am being accused of not RELENTING because I made an error, which I acknowledged and apologized for? Now I’m perplexed.

Regarding “Ms. Hates the lies,” I feel pretty comfortable standing by what I wrote.

Bebe, I can only say that I hope you do come back and add something of substance to the conversation, as your comments in that prior post were quite good.
With apologies to everyone else for this diversion, I plead: can we please get back to the point???

1/12/06, 11:55 AM  
Anonymous María Luján said...

Mr/Mrs
someoldanonposter-Hates the lies
I am sorry but your style was very aggresive in your last post. BTW, I thought you were who you aren´t.

I wonder if in the future another space for discussion can be constructed, with

*Agreement in mutual respect in disagreement.
*Agreement in that the basic 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.

These three are very general but however important.

*Agreement that there are as many opinions as people about the medical decissions done by doctors ( from mainstream or biomedical field) and followed by parents in the treatment (in practice) of ASD children.

This one is extremely private and touch the field of judgement of other parent´s decissions, something I consider I can´t and I must not do. We can talk about science, proper procedures and doctors doing proper or improper procedures but I think that we can not make assumptions on private options because here there are many details we do not and probably we will never know and I do not think that private options must be topic of public scrutiny.

The questions for me seem to be in the case of this tragedy of Nadama family
Was the lead poisoning correctly diagnosed by knowledgeable doctors using trustable lab tests ?
Was this tragedy result of malpractice because of the wrong procedure of the treatment?
So, the issue comes for me over and over to doctors doing correct procedures or not.
What do you think?
María Luján

1/12/06, 3:45 PM  

Post a Comment

Links to this post:

Create a Link

<< Home