Archive | June, 2006

Great Ormond Street Appeal

11 Jun

Got an email from my friend Marty yesterday:

Over the past few months I’ve played a very tiny part in a VERY special auction which is now live. Some facts that might bore a few of you but:-

“In 2005 Lancasters armourie were contracted by the BBC to build a number of prop swords for the Christmas special episode of the hit revival of Doctor Who.

Used by Doctor Who actor David Tennant and the leader of the Sycorax race the swords were seen by 10 million viewers.

Now Lancasters are auctioning the prototype of the sword (above) in aid of London’s Great Ormond Street Hospital.

And, as if owning this unique piece of television history wasn’t enough Lancasters have been aided in their fundraising effort by the generosity BBC Wales and actors David Tennant and Sean Gilder who have provided their signatures for engraving on the blade.

The sword will be auctioned via ebay. Clive Lankford of Lancasters tell us they “are not shy about the fact that we want this to make as much money for GOSHCC as possible”.

See Marty’s site for more details: http://www.mayorwatch.org.uk/news.php?article_id=300

Geier and Geier ‘Significantly Misrepresent’ Themselves

10 Jun

Kathleen has written part one of a multi-part look at some of the recent actions of those purveyors of Lupron, the Geier’s.

Seems that a new study of theirs; ‘A Clinical and Laboratory Evaluation of Methionine Cycle-Transsulfuration and Androgen Pathway Markers in Children with Autistic Disorders’ was accepted for publication in Hormone Research and published online prior to being published traditionally.

The interesting bit is the claim of institutional affiliation to Department of Biochemistry, George Washington University, Washington, D.C., USA.

Intruiged, Kathleen contacted Dr. Allen Goldstein, Chairman of the GWU Department of Biochemistry and Molecular Biology to ascertain exactly what the Geier’s affiliation to GWU was. His reply was a bombshell and a further mark against the Geier’s honesty and reliability:

He described the affiliation with the Department of Biochemistry in the Hormone Research article as “fallacious,” and stated that it conveyed a “significant misrepresentation” of Mr. Geier’s position in the field of biochemistry.

I urge you to go and read the rest of Kathleen’s investigation into the Geier’s. Its a compulsive read.

As I understand it, this is _far_ from the end of the matter. There will be further parts to this ongoing issue. Keep an eye on the Neurodiversity weblog.

Creatinine, Chelation and Lupron…Oh my!

6 Jun

A recent news segment on NBC in America covered Chelation therapy as a treatment for autism. The response was as predicted. The pro-cure/biomed side went into raptures. Everyone else winced. As a UK resident I have to say that (sorry America) this seems to be a furtherance of the dumbing down of science in the US that has led to both this sort of report appearing on a serious news show and the joke of creationism being taught in science classes.

Anyway, thankfully, these types of things are still viewed by most people (over there and over here) as marginal and not representative of the truth. However, that doesn’t negate the fact that there is a lot of experimentation going on by so called ‘scientists’ and by some parents. My favourite quote so far from some retorting to the Dateline segment is:

A treatment used prior to proof is called an experiment.

ACSH.

So what can be said to be poorly understood and yet still be used?

Lupron for Autism

I recently had an interaction with a number of people on an Autism Biomed board after they stated that Lupron was ‘working miracles in recovering my child’. At least one of these people was someone who had assured me about a year ago that chelation was ‘working miracles in recovering my child’. A part of me fully expects to hear that car battery acid is ‘working miracles in recovering my child’ from the same person a year from now. After that? Tongue of Toad? Eye of Newt?

It was clear that the ‘scientists’ advising these people had not informed them of basic facts about the condition that was allegedly affecting their kids autism. Neither of them had had their childrens hand and wrist radiographed which is the standard way of determining if a child is undergoing Precocious Puberty or not. Basically, If bone age is within 1 year of chronological age, puberty has not started. If bone age is advanced by 2 or more years, puberty likely has been present for a year or more or is progressing more rapidly.

The single most basic fact about Precocious Puberty is that it is immediately subdivided into Central Precocious Puberty (CPP) or Pseudo Precocious Puberty (PPP). It is vital to make this difference as the treatment is different in each division. The division can only be made by testing for premature activation of the hypothalamic-pituitary-gonadal axis. When I asked one of these people if the Geiers (yes, it was they) had subcategorised into CPP or PPP they did not know what I was talking about. They were entirely ignorant of these terms. It was clear neither of the two people I had spoken to had undergone this sub-categorisation.

They claimed it was ‘enough’ to ‘know’ that their children had excess testosterone. One of these children is female. This child’s parent was utterly ignorant of the fact that excess testosterone in females was not called ‘precocious puberty’ but indicative of ‘Androgen excess’. Lupron is not mentioned as a treatment for Androgen Excess.

One other interesting fact about increased testosterone is that in patients diagnosed with PPP, this can result from an excess of vitamins and other dietary supplements. Its common knowledge that this is a common part of DAN! and DAN! style treatment regimes. Yet again, the Geier’s patients parents were entirely unaware of this fact.

Sources

http://www.emedicine.com/ped/topic1882.htm
http://www.emedicine.com/PED/topic1881.htm
http://www.androgenexcesssociety.org/signs.html
http://www.healthatoz.com/healthatoz/Atoz/ency/sex_hormones_tests.jsp

The Role of Creatinine in Relation to Porphyrins and Chelation to Creatinine

I’m not going to go over this subject as well as Not Mercury recently did but I want to highlight a few key concepts from that paper that it seems the authors either missed or didn’t account for.

The paper’s essence is that it is significant the their are elevated levels of Porphyrins in autistic kids. However, they fail to account for the likelihood that this is a false elevation. The study attempts to measure the amount of porphyrins in the urine of their subjects. However, because collecting urine of a standard volume, content and dilution is next to impossible, its necessary to use a stable compound to express the porphyrins as a ratio of – which is where creatinine comes in. So, the paper claims that, relative to creatinine, porphyrins are high in autistic kids.

However, as Not Mercury also highlights, its fairly accepted amongst DAN! practitioners:

Creatinine is often found to be marginal in the urine of autistics, and low creatinine can skew urine analyte results to high levels. So, also take note of creatinine levels if the laboratory results include ratioing to creatinine.

PDF translated to HTML from ARI

And Andrew Wakefield’s colleague, Paul Shattock, also reports low creatinine in autistic kids (see source on Not Mercury blog entry). So why does that matter? Now, I’m no scientist so I was struggling to find a way to visualise this in my head and I came up with the bar chart below. The thin black line is an arbitrary ‘baseline’ (where the creatinine stops and the Porphs start) below which in purple is creatinine levels and above which is Porph levels. Now, in the autistic representation note how the decrease in creatinine has led the baseline measurement for Porph to falsely raise the amount of Porphs. In other words, relative to the baseline, there are not more Porphs as such, but less creatinine. I’m open to interpretation on this by the way – I don’t want it to be misleading.

There are also anecdotal reports of various chelators reducing creatinine further:

my son’s creatinine has come down to 11 by round 3. why is it going down?how can i bring it back to normal? i have been giving glycine to him also during rounds – every 3hrs dmsa+ala

Onibasu.

And:

Importantly, recent data suggest that oral NAC administration > transiently lowers creatinine levels.

PubMed

So here we seem to have a situation wherein autistic children are already noted to have low creatinine levels and that these levels could be even further reduced by the chelators used either in the study itself or by parents externally to the study and still the study authors claim it is significant to epxress Porphs _as a ratio_ of creatinine.

Autism One

Meanwhile, over in Chicago, Autism One has been in full force (or should that be farce?). I’m reliably informed that one of the big draws was David ‘crowd pleaser’ Kirby so I downloaded his slides to have a looksee.

Incredibly, it seems that David Kirby has magically ‘forgotten’ everything he conceded to blogger Citizen cain regarding the use of CDDS data. Lets remind ourselves of what Kirby told Citizen Cain:

…if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis. He [kirby] also conceded that total cases among 3-5 year olds, not changes in the rate of increase is the right measure….

And yet, here we have slides showing Kirby demonstrating the change in the rate of increase, something he has conceded is inaccurate as a measure. He also refers to the increase in cases as ‘new’ cases when its been demonstrated time and time again that these are _not new cases_ . All in all, this is simply more dishonesty from David Kirby.

Autism and autistic people deserve better than this hodge-podge of sloppiness and dishonesty.

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