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
And:
Importantly, recent data suggest that oral NAC administration > transiently lowers creatinine levels.
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.
Left Brain Right Brain 
Hi Kevin
If you are interested, I will come later with some thoughts about the porphyrine paper. Please let me know
MArÃa Luján
At first glance I read this as “Creative, Chelation and Lupron…Oh my!†which may be my disorganized mind at work or my subconscious reading for me.
There does seem to be some creative accounting going on.
I would love to know how Paul established a controlled rate for autistics vs controls in terms of creatinine.
As I understand the action of Lupron, in real CPP, the growth plates on the long bones close too soon, so Luporon allows the child to reach their gene potential height. If a child w/o CPP receives Lupron, will they grow taller than they otherwise would? Will we have a group of great autistic basketball players in 10 years?
My husband takes creatinine as it is supposed to boost endurance for weight training. A study in fish showed fish receiving creatinine could swim 2-3x times longer than controls. Maybe chelation just lowers these kids energy level so they appear to have improved behavior. Treating my daughter for her hyperactivity made life better for all of us, but she is still PDD-NOS.
Dr Wakefield’s “colleague” might be Paul Shattock. But I would really doubt that Paul Shattuck keeps that kind of company.
“My husband takes creatinine as it is supposed to boost endurance for weight training”
Is he taking creatine? As I understand it, creatinine is the waste product after metabolism (which is why it is excreted).
Which raises another question – how many children with autism are given supplements that may contain creatine (artificially raising creatinine levels that have the potential to be lower than neurotypical peers in the first place)? Do any of the popular supplements administered to children with autism contain creatine?
Good spot Michelle ;o)
DoC
Yes, he takes metabolic waste product to boost athletic performance because guys at the gym do (but he is otherwise a smart, level headed guy). I told him as long as he dosn’t spend too much, it is probably a harmless placebo.
A few years ago, patients were showing up with peripheral nerve damage due to megadoses of niacin. I wonder what all those supplements are doing to their livers and kidneys. My sister had a kidney transplant 2 years ago, so I know it is not a trivial matter.
Ruth,
I know body builders and athletes take creatine but I don’t think creatinine is sold (or desired) as a supplement, is it?
Jonathan Semetko : I would love to know how Paul established a controlled rate for autistics vs controls in terms of creatinine.
[…]A total of 24 children (19 male, fi ve female) residing in the UK
(median age, 75 months; range, 39– 137 months) diagnosed with
a PDD using DSM-IV criteria 13 were recruited for a multidisciplinary
research project. All participants were school children.
Diagnosis of PDD was verifi ed by administration of the
Autism Diagnostic Interview – Revised by a trained rater. No
other measure of intellectual ability or level of daily activity
was examined in the PDD group. A self-selecting control group of
50 healthy children (31 male, 19 female; median age, 109.5 months;
range, 59 – 140 months) attending a primary school in the UK were
also recruited. None of the participants were taking any medications
or following any special dietary regimes at the time of
testing. Again, no measure of level of daily activity was assessed
for the control group. Food diaries were completed by parents/primary
caregiver of all PDD participants. Height (in cm) and weight
(in kg) of PDD participants (in underwear/light clothing) was
taken at the time of urine testing.
As part of a multi-disciplinary research project, parents of participants
diagnosed with PDD collected urine samples (20 mL)
between 12.00 – 16.00 hours from their children whilst present
at a General Practitioner surgery, for temporary storage (refrigeration
at – 4°C) and bulk transfer to the laboratories of the
Autism Research Unit, University of Sunderland, UK, for storage
at – 80°C. Early morning urine samples were also collected
from volunteer control participants by a researcher before the
start of morning lessons and transferred for storage at – 80°C.
Clone – I think Jon might’ve been curious only when he thought I meant Shatt _u_ ck – Michelle spotted it and I changed it ;o)
Ahh, well, delete at will.
It’s still sort of interesting though as it may plausibly punch perforations in the porphyrin paper, it too has it’s weaknesses.
I’m going off track a bit here, but I read a blog recently which discussed the New Scientist ‘heavy metals may be implicated in autism’ article;
http://www.newscientist.com/article/mg19025535.400-heavy-metals-may-be-implicated-in-autism.html
I then got into a bit of a discussion with someone who has said
“Believe you me, we want to find a cure for autism, if one exists. But we want it to be the correct and effective cure, not the product of wishful thinking.â€
http://cobranchi.com/?p=6519
Bleah!
At least this person recognises the uselessness of chelation.
Excellent post covering many topics, Kev.
There are also anecdotal reports of various chelators reducing creatinine further:
This just comes to show that you can’t just dive right into a biomed treatment. These things can be dangerous. I understand body builders take extra creatinine to build muscle mass. I wonder how lowering creatinine might affect autistic kids who already have low muscle mass.
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.
I have no words. It’s like it goes into one ear and out the other – or they intentionally mislead. Take your pick.
Once upon a time when the Catholic church wanted male singers with powerful high voices, they sanctioned the castration of lots of little boys, I think mainly in Italy. The castrati as a result of the lowering of their testosterone levels grew taller than they would have otherwise, but they also developed kind of ballooned chest cavities. No telling what other effects a lack of testosterone has on an otherwise normal boy. The Lupron castrati are probably only going to be temporarily deprived of testosterone, it’s assumed that the regular production of testosterone will resume… one hopes…when they stop giving Lupron, if they do stop giving Lupron… they are giving it to girls, too, for imaginary testosterone excess, apparently. So, who know what Lupron will do to the shape of their bodies, or the condition of their kidneys, livers, hearts, stomachs, brains… no one knows.
It’s all experimentation driven by the belief that it’s better to be dead than autistic anyway so all experimentation is absolutely justified. If a child dies from Lupron or chelation, they’ll all point the finger at the CDC and say it’s the CDC’s fault that the kid died.
Shouldn’t post before my second cup of coffee. Yes, my husband takes creatine. Lucky I have ‘peer review’ here.
Kev,
I find your views on creatinine to be quite interesting. I have no idea if creatinine is low in autistics or not. It seems to be somewhat low in my son and we may one day learn that it is a common trait found in autism. But for you to accept this as fact based on a couple of studies – including studies performed by DAN doctors no less – is just remarkable.
Where are the dozens of replicated peer reviewed studies to confirm this fact? In fact, I see no mention of low creatinine anywhere in the DSM IV criteria. Given that, how can you possibly accept the quote you provide, from DAN doctors no less, that creatinine levels are low in autistics?
It seems to me that you’re willing to change the rules depending upon the point you’re trying to prove. I provide dozens of studies showing immune system abnormalities in autistic children yet you discount them and argue that we cannot conclude it is symptomatic of autism because there haven’t been enough studies and because it’s not listed in the DSM. But now, you’re quoting a DAN study – which you routinely criticize – only because it happens to serve your purpose.
Hi David H.
I don’t see where Kev is saying that low creatinine levels are symptomatic of autism either but I see your point.
I also don’t recall that Kev discounted studies showing immune system abnormalities but I would agree that we cannot conclude immune abnormalities are symptomatic of autism. More common? Perhaps. Related? Perhaps, but I seem to recall you trying to draw a correlation between vague immune abnormalities and vaccines.
Whether or not lowish creatinine is more common in some children with autism, it does seem to be one possible explanation for the elevated porphyrin levels and one that wasn’t adequately addressed in the study, in my opinion.
Hi Clone,
No, I still wanted to know even though I knew which Paul, Kev was referring to.
Creatine is evil stuff,
It was popular among wrestlers when I was in High School (I graduated in 2000).
A wrestler in my State died from legally using it (he was also cutting weight and so was dehydrated). Another couple kids got some liver damage via legally using it.
We got a big ol’ lecture from our team doctor on not using it, it is evil tasting junk anway, that has to be mixed in to some drink to make it get past the gag reflex.
Luckily, pre-school age kids never dehydrate and always remember to drink enough, especially during the summer months, so I bet there is no problem with mixing it in with their Tang, after all just cause it hurt/killed a few absurdly healthy/in good shape 16 year olds, isn’t a reason to get all excited, after all these kids are 5 not 16 (end sarcasm).
_”But for you to accept this as fact based on a couple of studies – including studies performed by DAN doctors no less – is just remarkable.”_
Would you mind highlighting the part of my post where _I_ said _I_ accepted it as fact?
A careful read would reveal that I said: _”its fairly accepted amongst DAN! practitioners”_
If you’ve read the other entry I made about this paper you’ll note that one of the authors is a DAN! doctor. I find it more than a little interesting that the DAN! community has all sorts of theories that are conveniently tossed aside when they don’t fit the point that’s attempting to be made.
My personal opinion on this is that its far from established. I certainly wouldn’t describe low creatinine as symptomatic of autism. However, its a fact that we have a DAN! generated beleif that states creatinine is low in autistic kids and we have a DAN! driven study that doesn’t allow for that.
Hi
I contacted the main author about the CRT levels, by e-mail. He answered the day after. He told me that the levels of CRT in autistics and non autistics were similar. When cerebral palsy was present, they were lower. I think they should have included this clarification in the manuscript.
About the lowering of CRT , this fact , because of use of supplementation, would have increased the ratios, not decreased them.
However, the porphyrins testing have been studied for a long time:
“The association between a genetic polymorphism of coproporphyrinogen oxidase, dental mercury exposure and neurobehavioral response in humans”:http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16343843&query_hl=23&itool=pubmed_DocSum
If you search for Woods JS porphyrins in pubmed you will find 49 citations about porphyrins testing.
One of them:
A cascade analysis of the interaction of mercury and coproporphyrinogen oxidase (CPOX) polymorphism on the heme biosynthetic pathway and porphyrin production
MarÃa Luján
Where are the dozens of replicated peer reviewed studies to confirm this fact?
Is it true you were asked for this? Kevin C. said studies he cited were rejected because the groups only included hundreds of subjects. Aren’t you exagerating a bit?
Obviously, this is not a conclusive finding. There’s only one formal study that has looked into it specifically. It needs replication. For now, there’s quite a bit to hypothesize this is important and may invalidate many prior findings. I recommend a PubMed search on “autism creatinine” and “Rett creatinine”. See also this.
So why is there such a low rate of autism in France if the autistic kids there are all “heavy metal poisoned”… and why didn’t someone just check how much heavy metal they had in them along with the porphyrins, since things other than heavy metals can impact the level of porphyrins in anyone.
Autistic kids I see are very thin and hyperflexible, and from what I hear anecdotally they don’t seem to be big meat eaters… I guess I just don’t believe that the group of autistic kids that Lathe and friends worked with had normal creatinine levels. If he could share the data…
It should be easy to get creatinine levels for a hundred autistic kids. And then a hundred autistic adults…for comparison. Maybe they have the data on kids already from the CHARGE study out of the MIND institute… not that they’d necessarily tell us what they have…
So why is there such a low rate of autism in France if the autistic kids there are all “heavy metal poisoned 
Shall we refer to this as the Lathe Paradox?
It should be easy to get creatinine levels for a hundred autistic kids. And then a hundred autistic adults…for comparison.
Maybe the authors of the creatinine study should look at the porphyrin study and comment.
“However, its a fact that we have a DAN! generated beleif that states creatinine is low in autistic kids and we have a DAN! driven study that doesn’t allow for that.”
Apparently that’s not the case if you see Maria’s last post. The autistic children had similar creatinine levels as the controls so clearly low creatinine did not create a false positive. That porphyrin study is very interesting and I hope others attempt to replicate it.
I really don’t see why people are getting hung up on the rate of autism in France. How is that relevant to the porphyrin study?
“why didn’t someone just check how much heavy metal they had in them along with the porphyrins, since things other than heavy metals can impact the level of porphyrins in anyone.”
I think the point is that it’s not easy to just check how much heavy metal is in someone. The fact that the levels of porphyrin decreased after chelation would lead one to believe that it was heavy metals impacting the level of porphyrins. But I do agree that it would have been good to collect urine and stool to measure what was being excreted.
I really don’t see why people are getting hung up on the rate of autism in France. How is that relevant to the porphyrin study?
To explain it a different way; If France has not had an epidemic of autism, but most autistic kids in France are heavy metal poisoned (based on he representative sample in the porphyrin study) where does the poisoning come from, and why hasn’t it produced an epidemic?
David H. Apparently that’s not the case if you see Maria’s last post. The autistic children had similar creatinine levels as the controls so clearly low creatinine did not create a false positive.
I’m not inclined to accept a second hand assertion by one of the authors as gospel. If creatinine was measured and properly corrected the data should be included in the study.
That porphyrin study is very interesting and I hope others attempt to replicate it.
I’m sure others will attempt to replicate it just as others have attempted to replicate several other urinary marker studies and failed. If they fail to detect elevated porphyrins it won’t matter much to DAN! doctors and labs, they’ll go on testing and billing all the same. If they do detect elevated porhyrins other explanations should be considered but somehow I doubt it.
Hi
I included my conclussion from the author´s answer. I think he is very open to answer questions- he answered several to me- therefore I think anyone interested about his work can contact him.
Again, measurements of porphyrins have been published by the Dr Woods group since 1980´s related to different medical conditions, including mainly HM poisoning.
MarÃa Luján
“To explain it a different way; If France has not had an epidemic of autism, but most autistic kids in France are heavy metal poisoned (based on he representative sample in the porphyrin study) where does the poisoning come from, and why hasn’t it produced an epidemic?”
But the study did not attempt to explain where the poisoning came from. Maybe it’s from an isolated source that somehow only affects a small percentage of the population. Or maybe as others seem to be implying here the rate of ASD in France is actually underreported.
“I’m not inclined to accept a second hand assertion by one of the authors as gospel. If creatinine was measured and properly corrected the data should be included in the study.”
That’s fine but why were you so willing to accept a couple of studies showing low creatinine levels in autistics as gospel?
“I’m sure others will attempt to replicate it just as others have attempted to replicate several other urinary marker studies and failed. If they fail to detect elevated porphyrins it won’t matter much to DAN! doctors and labs, they’ll go on testing and billing all the same. If they do detect elevated porhyrins other explanations should be considered but somehow I doubt it.”
You’re assuming all DAN docs and the associated labs are unethical and that’s simply not the case. Is it really so hard for you to imagine that most DAN docs actually have the child’s best interest at heart and would not recommend a treatment that they knew was inappropriate? I’m not saying they don’t make mistakes.
_”That’s fine but why were you so willing to accept a couple of studies showing low creatinine levels in autistics as gospel?”_
Once more David – who was doing that?
Clone is right about creatinine levels, Its very curious how all of a sudden the authors can state they were ‘similar’ (and how similar exactly?) and yet that measurement was not recorded. You would’ve thought that a good DAN! like Amet would’ve been interested enough in that finding to note it.
No disrespect to Maria but this all smacks of an attempt to slap a sticking plaster over an open wound. We could all go around claiming things as gospel after the fact.
“Or maybe as others seem to be implying here the rate of ASD in France is actually underreported.” – David H.
(yelling indignantly)
Oh, Come ON! We all know that autistic kids are body-snatched (http://www.imdb.com/title/tt0049366/) train wrecks. You can’t miss them! If the kids in this study were identified in France then the whole tsunami of French autistic children could be just as easily identified….
(mutters indignantly, something about “no brainer”)
I learned that from the Lenny Letter.
The real puzzle is why is autism so low in France and yet at 1 in 166 or so in the Netherlands and yet the Netherlands hasn’t noticed an epidemic. Weird place, Europe… all kinds of paradoxes. Paradoces? They have the same 1 in 166 non-epidemic in Australia, too, last time I checked.
China has had terrible mercury dumping air pollution for years! Why weren’t they leading the world in finding autism, why did they have to wait for an imaginary epidemic started by TCVs made in the US and about to cause WWIII any day now. More to the point with the level of mercury containing smog they have why aren’t they all autistic by now? Just wondering.
The DAN! Amet Lathe paper seems to hint at some kind of heavy metal poisoning that is threatening all of France…or did I read that wrong? If they are isolated exposures then a questionairre ought to have answered the question of what those kids had in common but their siblings, and neighbors didn’t. (Like they were all dosed with Chinese traditional or Ayurvedic medicines containing mercury).
“Once more David – who was doing that?”
You were all doing that. Your initial reaction to reading Not Mercury’s blog was that the French study was “exagerrated.” It could only be looked at that way if it was true that the autistics in that study had lower creatinine levels than the controls. In the past, when you’ve been presented with studies that you don’t agree with you have been extremely skeptical about them. You have asked for replicated studies in well respected journals. Why didn’t you make a similar request to Not Mercury regarding creatinine levels?
Look, it’s extremely hard for all of us who have such strong beliefs to be completely unbiased when it comes to interpreting the myriad of studies that come out. I’m sure I’ve been guilty of it but I’ve probably been blind to it – as you seem to be now.
“The real puzzle is why is autism so low in France and yet at 1 in 166 or so in the Netherlands and yet the Netherlands hasn’t noticed an epidemic”
OK, so I thought the party line in your camp was don’t believe the numbers unless Fombonne has done epidemiology there. Has Fombonne done epidemiology there?
And what is your point about 1 in 166 in the Netherlands and no claim of an epidemic? Are you saying we’re overreacting to a disorder affecting more children than any other disease here in the US?
David H.,
Which would you prefer to believe- autistic children have elevated urinary porphyrins or decreased urinary creatinine?
_”You were all doing that. Your initial reaction to reading Not Mercury’s blog was that the French study was “exagerrated.†It could only be looked at that way if it was true that the autistics in that study had lower creatinine levels than the controls.”_
Not so, that’s just one aspect. I fully agree with you that the creatinine levels issue is far from settled but it does need to be addressed. This paper does not address it adequately. That doesn’t mean its a terrible paper, its just not terribly significant either.
_”In the past, when you’ve been presented with studies that you don’t agree with you have been extremely skeptical about them. You have asked for replicated studies in well respected journals. Why didn’t you make a similar request to Not Mercury regarding creatinine levels?”_
Actually, I did – we do communicate off-blogs as well 🙂
I think this study is interesting and valid, i just don’t think it does an adequate job at presenting the evidence of elevated porphs. Questions remain. I hope they’ll be answered by further study. However, its difficult to attach any firm conclusion about the role of mercury without answers to those questions. There are also other questions about the fact that a DAN! driven paper has apparently ignored DAN! accepted knowledge. Both can’t be right.
I hope I’m not blind to this study. I think its a very interesting one but I’m also aware that there are questions that need answering – the role of chelation in this study may have also lowered creatinine. Its not certain but whilst it remains a possibility it also needs investigation and clarification.
Porphyria can (I believe) also have a genetic basis. Again, I understand why the authors feel they can discount this but I don’t think they’re especially convincing as to why.
Are you saying we’re overreacting to a disorder affecting more children than any other disease here in the US?
Hmm, yes. Mental retardation affects about 1.5% of the population – always has. You don’t hear that much hype about it, and you don’t hear all that much about curing mental retardataion.
I’m not inclined to accept a second hand assertion by one of the authors as gospel. If creatinine was measured and properly corrected the data should be included in the study.
I agree. To come and say that after the fact is dubious. I’m sure the paper will be corrected, though. I wonder what the creatinine levels were for the Rett girls. For the final draft, expect the comment about Rett syndrome perhaps being caused by mercury poisoning to be dropped.
Or maybe as others seem to be implying here the rate of ASD in France is actually underreported.
To quote JB Jr, you lose your credibility once you assert that all the train wrecks could have been missed. (Kidding)
BTW, there’s a discussion about the vaccination schedule in France and prevalence of autism at GR’s blog.
David H: “You have asked for replicated studies in well respected journals. Why didn’t you make a similar request to Not Mercury regarding creatinine levels?”
Hi David,
One could easily make the argument that low urine creatinine levels have been reported and the effect replicated many times over. There have been many studies where a urinary marker has been reported as a ratio to creatinine and it would be equally valid to reach the conclusion that some children with autism also measure low creatinine in urine.
The effect is well known and acknowledged by many labs and scientists including DDI and James Woods, the porphyrin researcher.
I am also aware of several lab reports (including my own children and apparently yours) where low creatinine is documented.
It’s something that has been noted in Rett Syndrome patients yet the authors interpreted porphyrin elevations to be evidence of heavy metal toxicity in two Rett subjects. That seems like a somewhat subjective conclusion to me.
Since Creatine transporter deficiency can result in autism, creatine to creatinine ratios are commonly measured as part of a complete workup at major medical centers. Total creatinine levels are often reported and are often low.
In light of that I find it difficult to accept that the authors of this study measured and corrected for deviations in creatinine levels between groups. Something that would be difficult to establish retrospectively in frozen spot urine samples collected over the course of two or more years.
When that data is made available I will be happy to accept the possibility of a real elevation in porphyrin levels being more common in French autistic children as it would open many avenues of research including the possibility of heavy metal toxicity.
I hope the authors are also exploring other possibilities as good scientists should.
Porphyria can (I believe) also have a genetic basis. Again, I understand why the authors feel they can discount this but I don’t think they’re especially convincing as to why.
It’s usually genetic, if not always…at least that’s what my old neurologist said, he was trying to elicit something resembling a family history. They were going to test me for porphyria because of whacky food allergies and an intolerance to nearly every anticonvulsant known to man.
For the final draft, expect the comment about Rett syndrome perhaps being caused by mercury poisoning to be dropped.
Well I certainly HOPE so. What do they think the MecP2 and CDKL5 mutations are, coincidences?? The vast majority of Rett parents I’ve run into are far too sane to believe this, but that’s just the majority. And I can see the damage it would do if someone said this, and parents whose daughter was starting to regress got hold of it and believed it after the R-word came up, and started aggressively chelating. Oy. Rett spectrummers tend to be even more sensitive to, uh, everything than autistics. And that’s saying something.
I am sorry but you forgot something
“Well, it’s about time.”
appeared before the sentance “A treatment used prior to proof is called an experiment.”
This fact alone – the fact that this is the “first double-blinded, placebo-controlled study of chelation” is horrible if it’s true. is it really *THE FIRST* true trial? Why does it take someone who is not a MD to conduct it? Why only now – after so many years this debate is going on?
David H,
“And what is your point about 1 in 166 in the Netherlands and no claim of an epidemic? Are you saying we’re overreacting to a disorder affecting more children than any other disease here in the US?”
More than the flu?
“This fact alone – the fact that this is the “first double-blinded, placebo-controlled study of chelation†is horrible if it’s true.”
Why is that horrible? Is there any convincing credible science that mercury even causes autism? Is there any convincing credible science that children with autism have mercury toxicity? Is it horrible that there hasn’t been double-blinded RCT to see if sunspots cause autism?
“Is it really THE FIRST true trial?”
Is it a true trial? Would a true trial use what so many consider to be a dubious mail-order lab and non-standard methodology, for which established norms and real peer-reviewed supporting studies do not exist? Do you think this study is likely to end up in a real peer-reviewed journal? Did ASU’s IRB consider it a true trial? Why did they reject it? How will this study account for natural development or the results of other interventions? How many children are in phase two of this study – will it be a representative population?
“Why does it take someone who is not a MD to conduct it?”
Perhaps no MD’s in Phoenix were interested in touching it as a P.I. It could be tough to find an MD willing to reference the Bernard et al. article (due to the fact that it’s been refuted) as well as Bradstreet et al. (due to the fact that it did not go to real peer-reviewed publication where it could be referenced on Pubmed) in published work. If you mean, “why wouldn’t an MD be spearheading this in the first place?” I’d imagine that’s because many would have looked for credible peer-reviewed science that mercury even causes autism and that children with autism have mercury toxicity.
“Why only now – after so many years this debate is going on?”
Can you be specific about the nature of the debate you’re asserting exists (scientific, political, other?). Why do you think “only now” or “after so many years”?
“Which would you prefer to believe- autistic children have elevated urinary porphyrins or decreased urinary creatinine?”
It’s not a question of what I would prefer to believe. I simply want to know the truth. Besides from it setting us free, it will provide scientists with the best chance of developing a cure for my son.
“Hmm, yes. Mental retardation affects about 1.5% of the population – always has. You don’t hear that much hype about it, and you don’t hear all that much about curing mental retardataion.”
Hmm, I thought that ASD was more common than MR but maybe I’m wrong. But even if your 1.5% rate is correct, the key is that it ALWAYS HAS been that way – while most people, present company excluded, believe that we haven’t always had 1 in 166 for ASD. So until we know definitively that ASD has always been 1 in 166 it doesn’t seem inappropriate to use terms like epidemic to describe it.
This fact alone – the fact that this is the “first double-blinded, placebo-controlled study of chelation†is horrible if it’s true. is it really THE FIRST true trial?
First trial related to autism.
_”It’s not a question of what I would prefer to believe. I simply want to know the truth.”_
Exactly David!
But the truth is not yet available. This study may or may not lead us closer to the truth. In order to ascertain that, there are questions about the design and methodology of this study that need to be addressed.
The more holes that can be picked in a study – as long as they’re legitimate holes, not the kind of unfounded rubbish NAA performed on Paul Shattuck – the stronger the next study will be.
But even if your 1.5% rate is correct, the key is that it ALWAYS HAS been that way – while most people, present company excluded, believe that we haven’t always had 1 in 166 for ASD.
David: I take it that if it weren’t for talk of an autism epidemic, you could very well be in the acceptance camp?
I expect that our “hidden horde†is found in the upper 15% and the lower 15%.
I think 3% score below 70, and I’m assuming 3% score above 130. (Is scoring in the top 3 percentile a disorder? Yes or no, and why?)
Even though 70 is considered the cut-off for mental retardation, not everyone who scores below 70 is considered to have mental retardation – I think it’s because they have compensatory skills or something. So 1% to 1.5% is the prevalence of MR really.