Friday, February 10, 2006

STIMULATING ADVICE FROM THOSE WHO TOOK THE “HYPOCRITIC” OATH

[Note: This post discusses issues that arise in the debate over the safety and efficacy of chelation. I am not advocating chelation, nor am I even saying that we have chosen chelation as an appropriate intervention for our son. My point in writing the following is to illuminate the hypocrisy of one side in this biomedical debate.]



The Associated Press reports that an advisory panel of the Food and Drug Administration recently decided that Ritalin should carry a “black box” warning because of a risk of death. At least 25 people ⎯ including 17 children ⎯ have died after taking Ritalin or similar stimulants that are commonly prescribed for ADHD.

What does this have to do with autism? Well, a lot actually. Specifically, this story helps to highlight the hypocrisy of one group of people who dare to criticize parents who attempt “alternate” biomedical interventions.

Let me note that this is a debate among those who acknowledge autism spectrum disorders as being medical conditions that, at least in some cases, require some form of medical intervention. Those who might argue that all forms of autism are nothing more than a cognitive difference not needing any medical intervention are certainly welcome to keep reading this post, but they might get a tad bored by this debate.

In essence, I am writing about the difference in approach between physicians who utilize methodologies such as the DAN! protocol on the one side, and physicians who would identify themselves as being “mainstream” doctors who recommend more “traditional” treatments on the other.

Most of us first heard the diagnoses of our children from the lips of mainstream practitioners. My wife and I had the experience of first hearing the diagnosis when our son was four years old. A self-described developmental pediatrician told us the situation was dire and we needed to immediately place our son in a special autism school, and that he needed to take Ritalin.

We were not too keen on that first doctor’s advice, although we did at least look into the school. My relentless wife, though, kept searching for better answers, and we wound up dipping our feet into the alternative biomedical waters by starting our son on a gluten-free/casein-free diet and supplements. But we didn’t completely abandon seeking more conventional solutions.

At great expense, we had a multi-disciplinary evaluation performed, including a pediatrician, a neurologist, a psychiatrist, a psychologist, a speech therapist and an occupational therapist. The pediatrician and neurologist, in particular, were distressed that we would even consider “altie” remedies. The pediatrician opined, in no uncertain terms, that we were wasting our money at best and, at worst, we were risking our child’s well-being. His recommendation was that we get our four-year old son on Ritalin immediately.

It’s possible that the two “mainstream” physicians we spoke to were unusual in their advocacy for Ritalin, but I don’t think so. I’ve heard from too many other parents who had the same advice thrown at them to believe these doctors were unusual.

The doctors who recommended Ritalin are part of the same group that shout the loudest about chelation being a deadly and unproven intervention because it has never undergone safety trials for autism, and off-label use of medications and procedures is inherently dangerous. Yet what is it they wanted to prescribe?

The Associated Press story I mentioned above quotes one of the FDA committee members as saying “it would be ‘inappropriate, unethical behavior’ not to disclose that there was uncertainty about the safety of the drugs.” To me, that raises the question of whether adequate long-term safety testing has ever been conducted on these drugs.

Then, there is the issue of off-label Ritalin use. I know that many of us see autism and ADHD as being possibly related, but the mainstream medical community tends to consider them as totally distinct issues. Moreover, the warnings for Ritalin, even for its use in ADHD cases, include the advice that it “should not be used in children under six years, since safety and efficacy in this age group have not been established.”

So let me get this straight, reputable doctors tell me that I should not use any modalities that have not been proven safe, and yet they want to prescribe dangerous pharmaceuticals that are specifically contraindicated for young children.

I keep thinking about the 17 children who reportedly died while on Ritalin. I wonder how many other children died in cases where the connection just wasn’t considered. And I wonder how many of the dead children who were taking Ritalin got their prescriptions for autism. All that makes me wonder where the voices are of the self-appointed “quackwatchers” who screamed so loudly about the death of a child due to a botched chelation procedure.

7 Comments:

Blogger Bartholomew Cubbins said...

These numbers would be nice:
1. how many kids are on ritalin
2. how many kids have died on ritalin
3. how many kids are on chelation
4. how many kids have died on chelation

I predict that analysis of the data will be coopted by arguments over the source of the data.

Then there comes the grays: why did s/he die? Dose, allergic rxn, an unrelated incident? What type of chelation is being administered? Is it a drug mix-up or not?

The other thing I want to comment on is your insistence of trying to maintain a neutral stance on chelation, mercury, and autism for some unknown reason. Given your recent post on the Pat Sullivan blog, I find your neutrality pretty much nonexistent, which is your choice to make of course. Yet it's rather perplexing why you seem to bend over backwards to appear neutral on the issue.

2/10/06, 10:21 PM  
Blogger Wade Rankin said...

That’s a fair comment Bart, but it’s not really a matter of attempting to appear neutral. The point of this post was not the promotion of any particular intervention, but rather the hypocrisy of those who criticize interventions while upholding others that have no more validity. I make it a point to not discuss the specifics of protocols my wife and I have chosen for my son, because I think it would be pointless for the issues I’m trying to discuss. I do not believe in one-size-fits-all solutions. What works for one autistic child will not necessarily work for another. If I say that X+Y has worked wonders for my child, it can be misinterpreted as an endorsement of X+Y for all cases.

I don’t believe my comment at Pat’s blog is inconsistent with anything I have said before here. I believe chelation may be a valuable intervention in particular cases if mercury or lead toxicity is a part of the clinical picture. Again, though, that is not the point I am trying to make in this post. The point is that doctors who told me I would be risking my child’s safety by pursuing these crazy alternative interventions also told me it would be perfectly safe to toss some Ritalin down his throat. I find that to be so inconsistent as to be hypocritical.

2/10/06, 11:28 PM  
Blogger SquareGirl said...

Bartholomew Cubbins, Thank you for that link...I am sure that wouldn't have found it otherwise, and I found it to be quite interesting...

2/10/06, 11:51 PM  
Blogger Kev said...

I'm always perplexed by this argument. It seems to me (as someone who regularly shouts for chelation to be safety tested) that there are several points being missed.

1) Ritalin is dangerous. Yes....and? Who's disagreeing with this exactly? Whats the point in chelation quackbusters such as myself going after Ritalin when, by your own admission, it already carries a so-called 'black box' warning?

Let me just state, since it seems required, that I think any Doctor who leaps immediately to Ritalin or any chemical cosh should think again about their career path. I would certainly turn away from any such Doctor.

2) That said, it has to be said that Ritalin is a drug with bad side effects resulting from a genuine course of treatment. Chelation is a drug with bad side effects resulting from a useless course of treatment. In other words, at least Ritalin is being used for its intended purpose.

3) I don't believe for one second that all the instances of harm via chelation treatment for autism have come to light. Commenters on my blog have told their stories about severe and non-severe injury resulting from chelation. Of course, thats just my opinion - I have nothing to back it up.

4) You seem to be attempting to validate the treatment choice of chelation by comparing it with another dangerous drug. Ritalin is indeed dangerous but the fact that it obviously is doesn't in any way obscure or eclipse the fact that chelation as a treatment for autism is untested and does have severe consequences on occassion.

5) One of the subtexts I'm getting here is that its OK to push on with unverified treatments - there's none so double-blind as will not see - when that treatment is chelation but not when that treatment is Ritalin. Thats inconsistent at best.

2/11/06, 2:25 AM  
Blogger Wade Rankin said...

Responding to Kev:

"1) Ritalin is dangerous. Yes....and? Who's disagreeing with this exactly? Whats the point in chelation quackbusters such as myself going after Ritalin when, by your own admission, it already carries a so-called 'black box' warning?"

It does not carry a “black box” warning as of yet. A committee has recommended it, and the FDA will make the final decision. Who’s disagreeing with it? I referred to at least two “mainstream” doctors who told us Ritalin was perfectly safe for a four-year old diagnosed as being on the autism spectrum. That doesn’t even comport with the warning that has been on the drug. And based on conversations with other parents, these were not isolated incidents.

"2) That said, it has to be said that Ritalin is a drug with bad side effects resulting from a genuine course of treatment. Chelation is a drug with bad side effects resulting from a useless course of treatment. In other words, at least Ritalin is being used for its intended purpose."

Although my son has attention issues related to his autism, he has not been diagnosed with ADHD. As you say about chelation, where is the safety testing specific to the biochemistry of autistic children. And even if we were to assume that my son has ADHD, there has been no safety testing for children under six. The recommendations to which I referred were most-definitely off-label.

And the “use” of Ritalin is basically to mask the symptoms of ADHD while the underlying cause is left intact.

"3) I don't believe for one second that all the instances of harm via chelation treatment for autism have come to light. Commenters on my blog have told their stories about severe and non-severe injury resulting from chelation. Of course, thats just my opinion - I have nothing to back it up."

And I could say the same about Ritalin. But that’s the point. Too many doctors are telling us that Ritalin is perfectly safe while they also tell us chelation is dangerous per se. Now again, this is about hypocrisy and not about what interventions are best. I am neither advocating chelation for any particular child, nor am I condemning any parent who accepts a doctor’s advice to place their child on Ritalin. I am shocked, though, at the callousness with which some doctors treat the situation.

"4) You seem to be attempting to validate the treatment choice of chelation by comparing it with another dangerous drug. Ritalin is indeed dangerous but the fact that it obviously is doesn't in any way obscure or eclipse the fact that chelation as a treatment for autism is untested and does have severe consequences on occassion."

I’m not trying to validate anything. I’m trying to suggest that we should not judge any treatment options by double standards.

"5) One of the subtexts I'm getting here is that its OK to push on with unverified treatments - there's none so double-blind as will not see - when that treatment is chelation but not when that treatment is Ritalin. Thats inconsistent at best."

When it comes to autism in young children, both chelation and Ritalin are “unverified.” You and Bart both are trying to turn this post into a pro-chelation manifesto. I will not be baited into discussing the specific options we have chosen for our son. If the physician and the parents of any child look at the clinical situation completely, with an open mind as to all possibilities, and determine their best option by weighing risks against potential benfits, I have no problem with their decision, even if it means giving the child Ritalin.

2/11/06, 9:10 AM  
Blogger Kristina Chew said...

We've tried both "traditional" medicine and numerous "altie" remedies. You do what you have to do; you look at your child and try to think about what might be done to get him in the best way to learn, further his education, be in a classroom. We have encountered the same doubting looks for using "traditional" drugs" as well as for the biomedical ones.

Hippocrates' own remedies for illnesses ranging from fractures to epilepsy to ague would seem an interesting combination of what we today think of as "traditional" vs. "altie/radical."

2/12/06, 3:24 PM  
Anonymous kyra said...

right on, wade. thank you for pointing out the hypocrisy here. it is infuriating to me.

2/13/06, 9:28 PM  

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