Friday, September 14, 2007

Have Chelation or Biomed Done Anything For Their Major Proponents?

The current generation of shot-in-the-dark cure approaches to autism (generally referred to as "biomed") has been around for a while now. It's not surprising that many parents who have tried those approaches for years are starting to doubt them (source). Kev has already documented the lack of predictive succcess of 3 of the most loud proponents of chelation and biomed (source).

What I want to go over in this post is a more systematic review of recovery outcomes in the larger group of well-known parents in the biomed camp; the celebrities if you will. I think it would be interesting to determine if there are indications that a strong cure mindset (placebo effect) and the huge variety of treatments tried by such parents (particularly chelation) have had any discernable effect beyond natural developmental progress.

I came up with the following list by considering organizations such as SafeMinds and Generation Rescue, major biomed blogs, and the EOHarm mailing list.

Jim Adams
Julia Berle
Sallie Bernard
John Best Jr.
Mark Blaxill
Jeff Bradstreet
JB Handley
Amy Holmes
Erik Nanstiel
Wade Rankin
Lynn Redwood
Bernie Rimland
Rick Rollens
Lenny Schafer
Kim Stagliano (3)
Ginger Taylor

Considering that Kim Stagliano has 3 autistic children, we are talking about 18 children total in the group, if I'm not mistaken.

I wasn't sure if it was methodologically valid to include Julia Berle and Lynn Redwood, but that would've been a chief complaint if I didn't. Julia Berle, in particular, became well-known only after she showed up with a "recovered" child. She's also not that well-known. I'm not sure about Lynn Redwood on that, but her son was diagnosed with PDD-NOS. The outcomes I will discuss refer to classic autism or autistic disorder. (In other words, I'm trying to be as lenient as possible with the analysis).

There are 2 claimed recoveries in the group, although both are disputed. Readers can form their own judgements, since videos exist in the case of Redwood (video) and Berle (video).

The "recovery" rate for the group is then 0-11%, which is in line with the natural recovery rate of 10-15% reported in the literature. It should be noted that many of these children are still young and could change further.

There are claims of developmental progress, but they are not very impressive. Autistic children do develop (Pry et al., 2007; Charman et al., 2004), despite the impression media accounts might give.

For example, John Best has reported progress in his son's behavior, but it doesn't appear to be anything out of the ordinary. His son started out being obviously autistic, and after several years of chelation therapy, continues to be obviously autistic.

Note that chelation therapy lasts months, not years, when treating severe heavy metal poisoning. Such cases of severe poisoning are normally fatal without hospitalization.

Erik Nanstiel reports some progress as well. His account is peculiar in that he claims the biomed approaches he's put his daughter through have caused her eyeglass prescription to be reduced 60%. This claim is probably unprecedented. It's unclear what biological mechanism could force a change in the curvature of the eye. I suspect there was an error in the earlier prescription. It's a good thing the mistake was corrected, though, because good visual acuity alone can help with learning.

Jim Adams is very interested in chelation therapy, to the point that he conducted a small double-blind placebo-controlled study on the treatment. Results of the study were expected to be known late last year, but there are no indications that anything will be published (source) despite the fact that Jim Adams assured results would be reported regardless of what they were. His daughter has been on the treatment but he found it to be unhelpful.

Then we have a situation such as that of Amy Holmes, one of the first major proponents of chelation therapy as a treatment of autism. She had initially reported her son was making excellent progress in the area of communication, but many years later we find that her teenage son is non-verbal (source). I understand Jeff Bradstreet's case is similar.

Conclusion

From this admittedly not very scientific review, I conclude there are no compelling indications that extensive biomed and/or chelation therapy have proven helpful to the major proponents of the same.

23 comments:

  1. If biomedical treatments have independently observable benefits, does that make using them wrong?

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  2. You mean benefits in other conditions?

    Like chelation having benefits in heavy metal poisoning?

    Or are you referring to anecdotal and non-controlled observations?

    ReplyDelete
  3. passionlessDrone9/14/2007 1:37 PM

    Hi Joseph -

    What about addressing identifiable problems in areas that are subsequently identifed as no longer problematic?

    My son has diarheah every single day. His arms are covered in excema. We remove certain foods from his diet and he no longer has diarheah. His arms are no longer covered in excema. No doubt someone will tell me that I am not qualified to determine if he no longer has diarhea, or maybe he still has excema that the placebo effect is keeping me from seeing or feeling.

    My son had undectable levels of the usual bacteria in his stool. We introduce pro biotics and re test later to find those balances are being restored. Perhaps Doctors Data knew were introducing pro biotics and jiggered the test.

    My son shows high levels of yeast metabolites. We introduce anti fungal agents, and subequent tests reveal that those metabolite levels haved dropped. Concurrently, he stops injuring himself. Perhaps the windows he used to break by slamming his head into them were only annectodally broken, or, he's still banging his head, and I just cannot see the bruises on his forehead due to the placebo effect. Strangely enough, his therapists and teachers report exactly the same thing at the same time we appear to notice it; powerful stuff this placebo effect, it seems to even affect people who don't know my son is being treated!

    Other parents and reference books tell me that my son will develop a rash at specific intervals when all complex carbohydrates are removed from his diet. Amazingly, not only does this appear to be the case to my eyes and calendar, but even to my camera! My son's 'regular' pediatrician also somehow sees the same rash with his eyes and has no explanation for it; other than it probably has nothing to do with the dietary changes we have implemented.

    Testing reveals my son's levels of vitamin D are almost non existent. Supplementation and subsequent testing of this reveals the situation is being reversed. Of course, my regular pediatrician told us there was no reason to think his vitamin D levels were abnormal. Go figure.

    When the neurodiverse start this conversation, they always seem to ignore that are the completely testable factors that biomedical treatments can alleviate.

    The fact of the matter is that your standard pediatrician is never going to tell you to test your autistic child's yeast metabolites, essential metal levels, or gut bacteria levels. The only people who will suggest you do so are some of the people on this list. When you have seen not only the behavioral changes, but the test results come back differently, the chattering of the neurodiverse is laughably pointless.

    - pD

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  4. Come on. Doctor's data?

    If there are known ways to treat certain identified medical problems, I don't see what would stop you from pursuing them.

    Do mainstream doctors conspire to keep the truth away from you, and it's only the brave alternative doctors that can diagnose and treat what you know is there? I doubt it. Alternative medicine doctors are generally there to take advantage of the placebo effect, which exists in all conditions I believe.

    And again, as I explained previously, when I say "placebo effects" I don't mean "you are lying". Look up the history of Secretin.

    Secretin purportedly made kids talk. That seems quite a bit more impressive than your account.

    Demonstrate the medical effects you refer to exist, with something other than anecdotal evidence, and I'll believe you.

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  5. A lot of kids have food sensitivities. That taking the food out of their diets will help is quite sensible. I don't see what's so questionable about that--it's what any doctor would recommend. There's a big difference between removing a food that's badly tolerated (which is completely safe), and using chelation (which can kill a child).

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  6. Right. There's a huge difference between what your doctor would recommend and what Dr. Geier would recommend. That's key.

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  7. The "recovered" kids on the videos still look pretty much autistic to me. They just happen to be high functioning, and would probably have turned out that way without any of the biomedical interventions.

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  8. Lyn Redwood's son was diagnosed PDD,nos as a preschooler. He's still PDD,nos, if you ask me.

    Julia Berle's son may have a genetic sydnrome that hasn't been tested for in his case. He has an obviously dysmorphic face. I don't think he makes a good example of a typical autistic kid... maybe no kid does, but most folks don't think that "mercury poisoning" makes a child's face dysmorphic, the face is shaped shortly after conception.

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  9. you could add Lenny Schafer and probably Jim Moody and Bob Gilmore. I don't think their kids are even slightly qualifying for "recovered" and they've all been into DAN! for years. McCandless' grandaughter, too.

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  10. I did count Lenny Schafer. I wasn't sure if Jim Moody was a parent, but I don't think he's that well known anyway. Bob Gilmore, I don't even know who he is honestly.

    Camille: I tend to agree with that evaluation. But I counted them as claimed recoveries to be fair. I do wonder how those kids will do as adults. They'll certainly be pressured to appear recovered.

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  11. Joe,
    My son with ADD is completely cured. Does thast count? The one with autism keeps making progress.

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  12. What I am referring to is a change in biomedical treatments (Ceteris Paribus), with no possibility of placebo effects by the child, with any resulting positive or negative reactions being evaluated and recorded by independent third parties unaware of any treatments being offered.

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  13. Placebo effects, in general, are probably not just in one's head.

    Either way, placebo effects are not the only possible error. Coincidence is another possibility. Evaluator bias (intentional or unintentional) is another.

    That's why double-blind placebo-controlled studies are key. They control for all those things.

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  14. Coincidence and evaluator bias would be just as common/uncommon in double blind as in my example. How do you explain evaluator bias when the evaluator’s expectations are neutral?

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  15. Coincidence in a DBPC study is controlled by having randomized groups that are large enough. Coincidental remissions should be just as common in both groups, statistically.

    Evaluator bias could, for example, be due to the evaluator expecting improvement after some treatment or simply after the passage of time. If you're using the same evaluator, this can obviously occur. If you're using two evaluators, differences in the evaluations could simply be due to disagreement.

    No matter how you slice it, ad-hoc observations of a single individual can never approach the certainty level provided by a DBPC study.

    But the key point in autism is the strong placebo effects (including subjectiviby, coincidence and bias) that have historically been observed, particularly in the case of Secretin, where, as I noted, children were even believed to have spoken for the first time after treatment (one such child was Jeff Bradstreet's).

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  16. The ad-hoc observations of a single treatment, other then Secretin, for a single individual that eliminate all possibilities of placebo (including subjectivity, coincidence and bias) would be the best evaluation of treatment for that individual, would it not?

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  17. That would be a case report, which can be of interest, as a prelude to real studies. But it doesn't approach a level where we can say for sure the treatment is helpful (even for that child in particular).

    BTW, I found about 3 case reports that made Secretin appear promising.

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  18. Although I cannot help but be honored and humbled by the company in which you place me, I think using my family's case as part of a statistical analysis is ridiculous. I have avoided discussing specifics about the manifestations of my son's ASD, the exact nature of the interventions we use, and the results of those interventions. The closest I will come to discussing it is to say that we would have abandoned this road a long time ago if we did not see significant progress that could be logically related to what we are doing. But then again, I view the concept of "cure" (or alternatively "recovery") as a process rather than a result. It is a journey without a specific road map or timetable. As always, I speak only for myself.

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  19. Modern medicine sees all mental illness deriving only from the brain - primarily from neurotransmitter imbalance and nothing else - the truth is that in many cases there is often an underlining physical cause (eg: infection, celiac disease, etc) and this is often never investigated, and so its no wonder today we are faced with the current tragedy that the Mentally ill die 25 years earlier, i mean look at these studies:
    'An autopsy of 82 patients who had been diagnosed with schizophrenia. Gastritis was found in 50%, enteritis in 85% and colitis in 92%.' read more...
    '99% certain of a genetic association between schizophrenia and coeliac disease' read more..
    'Enterocolitis discovered in the majority of children with Autistic spectrum disorders'
    for more see
    http://www.gutandmentalillness.com

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  20. Wade: I was well aware that you have not disclosed which biomed treatments you are using. That's why I couldn't just say 'only chelation'. The inclusion criteria is that you've been fairly well known around here for some time. I think that's a legitimate question: Of the major proponents of alternative medicine (biomed) treatments for autism, let's find out the recovery rate.

    And Wade, all of our children make progress, some more than others naturally. Just last night, my son greeted a visitor by saying "good evening". First time he's ever done that.

    The difference is that some of us don't do biomedical experiments with or kids.

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  21. Joseph,

    There is no way to respond to your last comment without getting into details of particular interventions and the timing of particular breakthroughs. Not all of the interventions we had great hope for provided the big results we thought we would get. Others exceeded our expectations. I can only say that we are convinced of a connection for reasons that make sense to us.

    And just so we're clear, there are multiple reasons I don't discuss particular interventions. The most obvious reason is I don't want to be put in the position of being said to have "endorsed" a treatment choice that is best left up to individual partnerships of doctors and parents. The more compelling reason, though, is that disclosure is not my choice to make. Some day, my son can make his own choice as to how much of his story he wants to tell. I simply don't have the right to make that choice for him.

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  22. You discount my claim that my daughter's eyesight improved as evidenced by her eyeglass prescriptions... wondering how biomedical therapies could "change the shape" of the lens in her eye. I suppose it hadn't occurred to you that the muscles that control eye movement also play a role, as does anything that might interfere with how the eye connects with the brain? It's quite possible that metal toxicity was interfering with her eyesight via these other mechanisms... and that chelation is responsible for the improvement. It's not unprecedented. I've met parents who also have seen improvements in eyesight after chelation.

    Erik Nanstiel

    ReplyDelete
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