A Touch of Alyricism

Dedicated to the equally fascinating topics of autistic advocacy and the 'sisterly sophistries' of radical gender feminism. Other topics may occasionally crop up. Contactable at alyric@gmail.com


Polemicist since Grade 8

Sunday, May 13, 2007

DAN! Down Under

14 May 2007

Dr Morton Rawlin

Director of Education

Royal Australian College of General Practitioners

1 Palmerston Crescent


Dear Dr Rawlin

The Sydney Morning Herald of 3 May published an article titled ‘A Fresh Approach’ describing the Defeat Autism Now! (DAN!) biomedical protocols for treating autism. The article also served as an infomercial for a conference on DAN! Protocols organized by the Mindd International Forum on Children’s Health (Mindd) to be held in Sydney on 18-21 May 2007. The registration form for the conference prominently displays that attendance counts towards the QA&CPD points Program of RACGP. I would ask that RACGP reconsider that position. Perusing the program and the speakers, the thrust of this conference is a focus on marginal theories of autism causation combined with treatment strategies, for which there is little to no evidence and where the treatment could be said to have unacceptable risks associated with it. Chelation for metal toxicity in the absence of a diagnosis of metal toxicity based on usual criteria and mega-dosing of nutrients to correct for deficiencies identified by highly questionable means come to mind as high risk procedures of unsubstantiated benefit.

I would like to expand briefly on the practices and beliefs of three of the international presenters at this conference, Dr David Quig, Dr Richard Lord and Dr Anju Usman. I am not familiar with the other presenters, but these three should suffice to illustrate why a reputable organization might wish to distance itself from even the appearance of endorsing the activities of the Mindd.

Dr Quig is Vice President, Scientific Support of Doctor’s Data a mail order laboratory in St Charles Illinois. (USA). To plausibly demonstrate a need for detoxification, a lab like Doctor’s Data is necessary. I refer you to the urine toxic metals screen and the sample lab report on the Doctor’s Data website. [1] It has a few interesting quirks. Notably, the reference ranges are one standard deviation, not two. The reference range for mercury is about a third of that cited by other laboratories such as Labcorp, using the same equipment and method. Putting these together the probability of getting an ‘elevated’ result from a healthy individual is over 50% with just two tests. Naturally, the testing is a panel for multiple metals. Two other factors conspire to practically guarantee an elevated result from the target population, autistic children. Doctor’s Data accept single urine samples and quantify the results as per gram creatinine. A recent study in Paediatrics International states “a significant decrease in urinary creatinine was found in the PDD group compared to controls” and recommends “to use other internal or external standards for the quantification of urinary compounds in PDD research.” [2] This phenomenon is fairly widely known. It is also a common practice to use a ‘challenge’ test to demonstrate metal toxicity. A succimer chelation agent is administered several hours before the urine is collected. The reference ranges, however, are for unprovoked samples.

Dr Richard Lord is the expert on nutriceuticals. His lab tests for organic acids on the principle that autism is a collection of inborn errors of metabolism that are just short of producing a full-blown syndrome. Though he uses phenylketonuria as an example, the implication is that there are deficiencies to be corrected rather than absences and this can be done through nutritional means, though this is clothed in impressive biochemical language, co-factors and the like. I refer you to his article on the subject, which is informative [3]. This may be the Science of the future, where everybody’s metabolic fingerprint can be identified and drugs, diet or whatever can be tailored to the individual. It is not the Science of the present and is decidedly experimental when used to dose or overdose autistic children with a variety of vitamins, enzyme cofactors etc. As with the testing of toxic metals, the reference ranges do not accommodate the low creatinine levels seen in autistic children. Therefore they are at high risk of receiving megadoses of nutrients based on lab results that are erroneously inflated. Interestingly, Doctor’s Data warns against using urine samples to test for nutritional metabolites so there’s not a lot of consistency in this field.

Dr Anju Usman is rather well known among DAN practitioners as a firm believer in the benefits of chelation. I refer you to a presentation she gave on the subject that was recorded on Autism One Radio. [4]. For Dr Usman, apparently the behaviours associated with autism are either symptomatic of mercury or lead toxicity, with the occasional dose of hyperactivity from aluminium toxicity. Autism presents simply as a challenge to find the best means of ‘safe’ chelation. There is no such thing as safe chelation. The risks of organ damage and the effect on bone mineral density are generally weighed against the real need to lower toxic metal levels and with no expectation that lowering those levels will have any positive effect on the neurological function of the child, since it never has in cases of real metal toxicity. But this is not the way it happens with these practitioners. Dr Usman was the DAN practitioner who, according to the Pennsylvania State Medical Board enquiry, was responsible for recommending EDTA chelation of five-year old Abu Bakar Tariq Nadama for alleged high aluminium levels.[5] She referred him to Dr Roy Kerry, who gave Tariq IV Na-EDTA instead of Ca-EDTA and the boy died of sudden cardiac arrest.

Lately, there’s been a new spin put on the dubious hypothesis that autism is a species of metal toxicity. A father/son team, Dr Mark and Mr David Geier came up with the bright idea that autistic kids cannot excrete mercury because they have excess testosterone, which binds the mercury in the body. So, they developed and patented the ‘Lupron Protocol’, whereby autistic children, girls as well as boys, some as young as four and five are chemically castrated with leuprolide (Lupron) and then chelated. The biochemical justification for this is bizarre to say the least. Dr Usman has had at least four patients go through this protocol. [4] according to the proprietor of Autism Media and a client of hers.

I have every faith in the skepticism of the average Australian GP and perhaps these conferences serve to keep our GPs abreast of what’s new in fringe Medicine this year. There is a crying need for education of primary physicians about autism for many reasons. Autistic children need protection from indiscriminate experimentation under the guise of novel treatment. There are issues of diet with many of these children due to sensory hypersensitivities. Whether these children are more prone to Coeliac than the general population is suspected but to my knowledge, not confirmed, but I could be wrong about that. There are known problems with autistic children being essentially denied medical treatment because of a combination of communication problems on the part of the child and false beliefs about autistic behaviours on the part of the physician. Perhaps RACGP would consider liaising with Professor Bruce Tonge of Monash University, an expert on Autism, to develop a real course for primary care physicians.

I have copied this letter to Australian Doctor in the fond hope that the journal could do a piece of investigative journalism that counterbalances the uncritical and frankly credulous efforts of the Sydney Morning Herald.

Yours sincerely

Cc: Professor Bruce Tonge

Professor Peter Mudge

Dr Lynn Buglar, Australian Doctor


1. http://www.doctorsdata.com

2. Spot urinary creatinine excretion in pervasive developmental disorders
Source: Pediatrics International, Volume 48, Number 3, June 2006, pp. 292-297(6)


3. Autistic therapies focused by laboratory data. Part I: Organic acids Richard S. Lord, PhD


4. Dr Anju Usman


5. http://www.circare.org/pd/kerry_ordertoshowcause_20060908.pdf

6. http://health.groups.yahoo.com/group/tddmps/message/1038?threaded=1&p=8

With many thanks to Mike Stanton, Kathleen Seidel, the Diva, Prometheus and anyone else I've missed who had all the very best information and/or analysis right there on their blogs.


Blogger Sharon said...

Great letter. Did you have any response?

4:21 AM  
Blogger Emeraldsea said...

An individual with the blogger display name “Alyric” apparently has written to you concerning my contributions to the recent MINDD conference in Sydney. The letter to you was published on the internet under the writers byline, “A touch of alyricism.” My response to the blog follows.

The organizers of the MINDD conference brought to Sydney and Auckland a group of people with experience in evaluating and treating children with autism and other diseases. The participants tend to affirm that properly designed metabolic interventions can help to normalize some patients with autism In the introduction to my article that you mention I attempted to describe why laboratory assessment tools may be useful in treatment of autistic patients, and the body of the article presents a case illustration that demonstrates how laboratory abnormalities may focus clinical interventions with nutrients.

The premise that nutritional status is critical for early childhood brain development hardly needs defense. The claim that individual special needs can be revealed by laboratory tests likewise is well established for many biochemical markers. The book that I have co-authored, Laboratory Evaluations in Molecular Medicine contains extensive discussions of the scientific basis and strength or weakness of support for the use of such markers. (That book is out of print, but a new, greatly expanded edition is to be published by September, 2007.)

While your criticism of spot urinary tests has some validity, there are dozens well known instances in which such a specimen is routinely used in standard clinical practice. Shifting of the creatinine normalization is a caveat that must be appreciated under several scenarios. However, the alternative of 24 hour urine collection has significant drawbacks also, especially for small children. We try to insure that the physicians who use our laboratory are fully informed about the caveats of urinary marker testing. Values reported by Metametrix Clinical Laboratory may be compared to both 80th and 97th percentile limits that are printed on the reports to allow the clinician to use their judgment about where the results may become of sufficiently great significance to merit aggressive nutrient intervention trials. Our test results more frequently provide evidence to rule out the use of unnecessary nutrient supplements as well as to show when supplemental nutrient sources and dietary improvement may be needed.

The principal theme of my presentations at the MINDD conference is that if regressive autism is to be considered amenable to biomedical interventions, then we must seek a working hypothesis of the pathophysiology. Then we can proceed to rational approaches for corrections of the pathology that expresses in each patient. I proposed such a hypothesis that I believe has merit. It leads us to investigate predisposing, precipitating and propagating factors. In addition to nutritional deficiencies and genetic weaknesses, the predisposing and propagating factors may include environmental toxicants such as heavy metals. Such factors should be considered in the full context of variables that contribute to the susceptibility to brain development pathologies. I expressed my concern that unwarranted emphasis on any contributing factor such as mercury toxicity can be damaging to the process of finding the most effective treatments and to the progress of establishing convincing scientific evidence about why autism has reached epidemic incidence and how to slow that statistic.

I am curious as to why you challenge my description of phenylketonuria as an example of a disease in which ”there are deficiencies to be corrected rather than absences.” Possibly you are unaware of the significant percentage of PKU patients who have a perfectly functional phenylalanine hydroxylase enzyme (the well-known, classical “absence”), but who lack the ability to produce the enzyme cofactor known as tetrahydrobiopterin (BH4). BH4 is then used as a conditionally essential nutrient to treat these individuals that, when supplied in appropriate oral supplemental doses can result in correction of the disorder.[1] These statements might be described as “clothed in impressive biochemical language”. However, you brought up a topic regarding the biochemistry of human diseases.

You correctly call the field of innovative clinical laboratory-guided nutrient interventions the Science of the future. Most well-informed individuals understand that the Science of the future will not happen until doctors with experience that allows them to weigh risks and benefits demonstrate efficacy by clinical trials. Some doctors, attempting to guide autistic patients (and parents) to effective therapies, feel compelled to use every legitimate tool at their disposal. I am sure that the average Australian GP, indeed, has adequate skepticism about new approaches. They also may have the boldness to investigate new therapies that might help their autistic patients, even though some of their colleagues may label them “fringe.”

Richard S. Lord, Ph.D.
Director, Science and Education, Metametrix Clinical Laboratory

[1] Muntau AC, Roschinger W, Habich M, et al. Tetrahydrobiopterin as an alternative treatment for mild phenylketonuria. N Engl J Med. Dec 26 2002;347(26):2122-2132.

10:11 AM  
Blogger Alyric said...

The reply from RACGP (and it wasn't pro forma) was that they were looking into it. Now, if they would get a good course going that would be really beneficial.

8:59 AM  

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