August 25, 2005

Boy Dies During Chelation

This sad story came out yesterday.

A few points that were not in the article:

There are several different types of chelation, DMSA, EDTA, DMPS and ALA, and they are administered in several different ways, oral (capsule or powder), transdermal (lotion) and intravenously.

(We have chosen oral DMSA as it is the safest approach with the longest treatment history, and we have given Chandler long breaks in between with mineral supplementation to replace the essential minerals that can be stripped away with the toxic metals.)

Dr. Jacquelyn McCandless reports that the boy had an allergic reaction to EDTA, but I don’t know if she has some inside information, or if this is her professional opinion based on her practice. If that is the case, this may be an isolated incident, but much more information needs to be released before we can draw to many conclusions.

It has been reported that this is the first case of a child dieing during this process, but I am sure that we will have to wait to hear the final word on that as well.

IV EDTA is not a DAN approved method of chelation, nor was Dr. Kerry a DAN doctor. It has been reported by parents who have worked with him that he is considered a good doctor.

IV EDTA is an FDA approved treatment for metal poisoning and has been for decades. It is a more aggressive form of chelation, and apparently is used most often for serious lead poisoning. If this is what Abubakar had, then despite his autism, as long as the treatment was administered properly (I have heard that IV chelation should be done in hospitals), this would seem a case of an unforeseen reaction to an appropriate treatment. The comparison to vaccine injury has been made by parents in the autism community.

Despite all this, Abubakar’s death illustrates the caution that should be used in approaching chelation.

This episode presents so much information for discussion, and will be investigated and analyzed by the medical and autism communities in depth as details on exactly how and why this happened emerge. Other discussions of the incident can be found here.

While we are waiting for that important information, here is something that should be discussed.

I see this as, among other things, a further indictment of the FDA and the CDC. As I mentioned redundantly in my post, File under: Things That Call For A CDC Study, the health authorities have not, and have no plan to, study chelation for autistic children with metal poisoning.

In that post, I originally wrote that DMSA was only available by prescription, but in the last week I found out that it, along with EDTA, are over the counter drugs.

So... FDA… which is it? Is chelation a potentially dangerous procedure that should only be done under a doctor’s care in a hospital setting? Or should we consider it as safe a cold medicine?

Is mercury safe enough to be injected into babies at 100x the EPA limit? Or is it dangerous enough to shut down an entire school and call in a hazmat team to clean up a dime sized spill?

Will you please give us researched, parsimonious information on autism, metal poisoning and their potential treatments?


Will the death of this child spur health authorities to safety and efficacy studies on the effect that different forms of chelation of metal poisoned autistic children? Or will they just react by saying that this treatment should not be done with out even looking into it?

I want to again call on the FDA and the CDC to DO THEIR JOB and give us guidance on how to treat our children.

UPDATE: Abubakar Tariq Nadama's death was a medical accident. The wrong drug was administered (Disodium EDTA rather than Calcium EDTA) and no one caught the error before it was given to Abubakar.

10 comments:

Wade Rankin said...

Ginger,

Because of the immunological problems many of our children have, lead retention can be a problem that may exacerbate the symptoms. In such cases, EDTA is not only appropriate, it would be considered the gold standard procedure even by mainstream doctors (assuming any would agree that lead was a problem in the particular patient). Like other chelators, EDTA can be administered in various forms, but many parents have opted for an IV form to try and get the metal out that much faster. It is believed that by getting the lead issue out of the way, it becomes that much easier to work on the mercury issue.

Even though EDTA is not part of the official DAN! protocol, some DAN! doctors have incorporated EDTA into their practices. Because of the higher dosage and use of an IV, a procedure like this tends to present a greater risk than we see with the forms of chelation with which most of us are more familiar (e.g., DMSA or TD-DMPS). For that reason, it is probably a better idea to perform it on an out-patient basis at a hospital. But as J.B. Handley pointed out on line today, the problem is that few hospitals will allow any kind of chelation on autistic children, which almost invites a tragedy like this. Just another reason to be p.o.'ed at the health care industry.

Kev said...

Sorry Wade, I disagree with just about all of that.

EDTA is not the 'gold standard' at all. DMSA has been the 'drug of choice' since the 1970's.

You're adding a totally undiagnosed problem (lead poisoning) into an already unsubstantiated one (mercury poisoning). This is exactly the sort of circular reasoning that led to the tragedy on Tuesday.

For JB Handley of all people to turn around and try to pin this on the Health care Industry is risible. The health care industry explicitly say: 'don't do it, its not safe.' Quacks like the one who killed this 5 year old go ahead and do it anyway and then JB Handley in his infinite wisdom says 'See? Its the health care systems fault!'.

I'm really trying not to be terse and angry here but the likes of Handley, Buttar, McCandless, DAN!, Kirby and all those others who recommend chelation do bear some responsibility for the death of this child. To try and turn it around on the health care industry is a sick joke.

What everyone seems to agree on (after the fact) is how risky EDTA is. At what point does the risk of death (which quite a few of us have been warning about for months now) outweigh the chances of one's child not speaking for a couple more years? Or smearing shit on the walls for a few more months?

The worlds gone totally mad. Where the hell has our collective sense of perspective gone?

Wade Rankin said...

Kev,

Frankly, I have not been too articulate in expressing my feelings about this tragedy. It was not my intention to lay the blame at the feet of the health care industry and have the biomedical community escape unscathed. If we have any integrity at all, we must take ownership of this tragedy and determine exactly what went wrong. If that means we have blood on our hands, we need to deal with it openly and honestly.

That being said, some of my anger has been directed at the fact that hospitals are not necessarily available for this. I may be speaking too soon, as we don't know if the doctor involved tried to admit the young man on an out-patient basis. But if a hospital denied admission for what is, in essence, a medically approved procedure, then my anger is not misplaced. But I agree that I can probably find a better target for the bulk of any anger.

I will not argue with you about what may be the better lead chelator. I can only note that EDTA and DMSA are both approved for use in chelating lead. The recent use of EDTA reflects a growing belief that the dysfuntion we see in autistic children may be related to a lot more than just mercury poisoning. I can only assume that this patient tested high for lead, otherwise there would be no point in using it.

I've been thinking of little else but this tragedy since I heard of it. In that time, my opinions on "what went wrong" have moved in several different directions. Up to now, we are all getting sketchy information from the media and on-line rumor mill. Maybe we should all wait until we get more information before we start forming lynch mobs.

In the meantime, as you have correctly pointed out in several locations, Kev, we're all losing sight of the real tragedy here. We all need to mourn with the Nadama family. Then, if further investigation shows where to lay the blame, let's honor his memory by doing the right thing.

Kev said...

OK Wade. I don't mean to be rude or confrontational and I know this has hit everyone who cares about their kids more than the politics pretty hard - including you - so, sorry if I sounded like I was digging at you particularly. Unfortunately the name 'JB Handley' is likely to cause something of a Pavlovian response in me ;o)

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Wade Rankin said...

No problem Kev. I was not offended by your comment. All of us are talking about this in the dark. As a member of the biomedical community, I do agree with you that we should take a long look at ourselves as well as "outside" factors.

Ginger said...

I picked a really bad week to have a life. Chandler is off therapy this week and next, so I had seized upon the chance to get lots of things done. Sorry for neglecting my duties here.

I agree with Wade that there is plenty of blame to spread around, and I think that you are both right in that I am pointing fingers this week when that should be saved for later.

You learn a lot about peoples’ value systems by seeing what makes them angry, and I am seeing concrete examples of my own in action here.

The anger reaction that I have experienced over this matter, and the Donald T. revelation last week have really come from a place where I think that the higher up in the food chain you are, the more responsibility you have agreed to take on and therefore you bear.

Where in I feel like adult HFAs on the internet can say practically anything and they should be offered most latitude, I feel like the U.S. Health Authorities (even more than health authorities in any other country, because of the vast resources and influence they have) should not even be allowed the appearance of impropriety or a pass when they have not dealt with an issue as thoroughly, honestly and efficiently as possible.

I realize that leaves little room for human error, and having written so often that we need to offer one another grace, it seems to go against one of my core beliefs. I need to work on reconciling that.

Ephesians says 'be angry and do not sin, don't let the sun go down on your anger'. I am not a very angry person, and have not had a lot of big things to be angry about, so perhaps this is my time to learn how to be angry, but not to sin.

As with most things in life, learning balance in this is a challenge.

In writing this I am realizing that I have not let myself even become a little bit sad about this boy’s death until this moment. I got angry instead. That is a very unusual reaction for me. I usually go straight to the tears on most matters.

Anger is a great buffer against pain, and I think I am going directly there in this case because it hits way to close to home.

Mourning Abubakar said...

Ginger - do you not understand the difference between IV and oral administration of a substance.

EDTA is a preservative used in food. It's obviously not very dangerous if taken orally.

The supplier of the EDTA indicates that Dr Kerry bought the wrong kind of EDTA. (sodium EDTA)

The kind that the supplier, Dr. Gordon said that he sold to Dr Kerry could be a very efficient drug to use to kill a child. It chelates calcium before it chelates lead and long before it touches mercury. It's not recommeded for mercury... but if you chelate all the calcium from a child's blood he will die.

Of a stopped heart. Get the picture?

An ear throat nose doctor killed a little boy by malpractice. And people like you, Ginger, who push the autism epidemic caused by mercury, helped to put him in that office that day. That' is what I believe.

Anonymous said...

What is your basis for saying that the "the supplier of the EDTA indicates that Dr Kerry bought the wrong kind of EDTA (sodium EDTA)"? Are you just repeating Dr. Gordon's speculation or do you have some hard evidence?

Catherine Whitcher, M.Ed said...

We've successfully chelated our daughter with DMSA. She was lead/mercury toxic with severe seizures. Learn more at www.missioncleankids.com