The unknown is exciting. As a species we seem innately curious about seeing whats over the next hill, beyond the next valley, what happens if we heat this liquid to its boiling point, etc etc. But fairly obviously, we quickly realised that if we didn’t exert some level of control over the things we were curious enough about to examine closely then the results were arbitrary and meaningless.
“Hey, look at that!” we exclaimed to ourselves, “we’ve just invented the scientific method. How cool are we?”.
Unfortunately, as well as being logical, nuanced creatures capable of appreciating such things as the pathos in satire we’re also reactionary and blinkered. As someone recently remarked:
Too many people on all sides of the debate(s) seem to wear blinders that prevent them from acknowledging how little we all know.
A statement I fully support. However, there are certain things that we need to be certain about when we treat autistic children.
Is chelation safe? Here’s Wade again, quoting a commenter called Random John:
At any rate, it’s still pretty unclear why chelation therapy seems to be successful for some children, but not for others. The polarity of the thimerosal and chelation debates does not seem to cover the ground necessary to understand what’s really going on.
Which is very true. Unfortunately, its yet another example of shutting the barn door after the horse has bolted. To worry about these things after you’re already treating an autistic child with something like chelation is quite simply stupid. If there are people who are concerned about what effects chelation may or may not have on autistic children then basic medical principles need to be applied: first, do no harm.
That means you need to conduct safety trials before using something that has the following warning on it:
The use of this drug [EDTA] in any particular patient is recommended only when the severity of the clinical condition justifies the aggressive measure associated with this type of therapy.
Recently such people as Dr. Mary Jean Brown, Chief of the Lead Poisoning Prevention Branch of the Centers for Disease Control claimed that if chelators were used properly then they’d be safe. I take extreme issue with this viewpoint.
Chelation is essentially a chemical process – it alters the chemical composition of the body. Bearing that in mind, consider the following:
This review focuses on recent advances in the in vivo study of the whole brain in idiopathic autism…..Diffuse abnormalities of brain chemical concentrations, are…found. Abnormalities of ….brain chemistry…are evident by early childhood….
So, the brains of autistic people are chemically different then the brains of non-autistics. Given that fact, is it a) stupid or b) clever to use a process that alters the chemical composition of the person and which has never undergone any safety trials in regards to autism?
There’s a whole bunch of people here who need to take a drastic step backwards and do some basic safety trials on what is, irrespective of their beliefs, a poorly understood and potentially dangerous/fatal process.
Left Brain Right Brain 
*yawn* Sue’s gettin’ angry again.
Sue’s got this thread on a short trip to nowhere.
Mission accomplished, Mrs. Sam.
“Next I expect Wade to jump in and say that I’m a AfricanAmericanophobe, because Mrs King was African American. Or that I’m a white-man-o-phobe because the quack is a white man, or maybe I’m a sexist because he, the quack, is a man, or maybe Wade and Sue M. will say I’m a self-hating womanophobe because Mrs. KIng was a woman.”
My, Camille, we are feeling a little paranoid, aren’t we? Actually, I thought it was a fair, albeit irrelevant, statement. If one reads the background of that guy in Mexico, one must wonder why anyone would go to him, regardless of desperation. The fact that the biomedical practitioners I know of have actual degrees and licenses makes this an inapt comparison.
Someone help me here because I’ve never been very good at these things. When one states an irrelevant argument to refute what a debating opponent might say on another topic, or what that opponent has said before on another topic, is that called a “straw man” or a “red herring?”
My stating that I expected to be jumped on for being an imaginary phobe of some kind is the result of conditioning.
I learned that by commenting negatively on the fact that Kirby seems to be hiding the fact that he belongs to a minority that doesn’t get treated well in certain circles, in spite of the fact that he had based a large portion of his career prior to meeting up with the mercury moms and dads on being a proud member of that minority, that made me a suspected bigot in the eyes of you, Wade and Sue M, and that you seemed to take some delight in throwing down the homophobia card to which there is almost nothing one can reply in one’s defense.
So I realized that after Sue got ugly over my comment on Mrs. King’s death that the next insult might be that I’m a racist, so I reacted defensively, you know, because of my prior conditioning. You know, the conditioning that you and Sue performed. It worked almost well enough to prevent me from mentioning any minority groups ever again.
I can’t bash lawyers as a group because some of my best friends are lawyers. Well, not really, but I sure like Anne, and so I have to assume that most lawyers are nice like her.
_”Say it with me, mousey… how the hell do you know what damage is done with what dose? You don’t. Understand? You speak as if you have this knowledge beyond anyone else here about the amount of mercury (via thimerosal) which COULD possibly damage babies. If you do have this knowledge, feel free to give us your credentials.”_
Taste the irony: replace the word ‘mercury’ in the above from Sue with ‘chelation’ and you have my points made for me.
Wade – straw man or red herring is acceptable I’d guess but lets look at the cause for a moment. In a different thread you all but accussed Camille of being a homophobe (unless you were referring to a different ‘she’). It consequently turned out that no homophobic remarks were present anywhere on this blog but it nicely derailed the discussion for awhile – people in glass houses etc etc my friend.
Kev wrote:
“Taste the irony: replace the word ‘mercury’ in the above from Sue with ‘chelation’ and you have my points made for me”.
– Haven’t I agreed with you that more studies are needed on this topic? What else do you want me to say? Hopefully, mousey has gotten the point…
-Sue M.
Sue M. ” Hopefully, mousey has gotten the point…”
Have you made a point Sue? I’m not attacking you here, just trying to understand what your point is, assuming you have one.
Sue, the fundamental question is whether the dose of mercury given to these children can cause the “damage” claimed by anti-thimerosal activists. As of yet you have not produced one reference that says with ANY conclusivity that immunizing children with thimerosal-containing vaccines causes autism.
If your point was that you had no point, mission accomplished.
And you managed to completely ignore my other question:
‘But it’s completely ignored by you, Sueâ€.
-No, not ignored mouse. I just don’t believe it for various reasons. You can believe what you want and I can have my own opinions. That’s what makes the world go round…
Again, I ask…what are those reasons?
“In a different thread you all but accussed Camille of being a homophobe (unless you were referring to a different ‘she’). It consequently turned out that no homophobic remarks were present anywhere on this blog but it nicely derailed the discussion for awhile – people in glass houses etc etc my friend.”
Although I hate to move back to the off-topic realm this thread briefly went to (in no small part due to me), I need to respond briefly.
As a point of clarification, the comment on a previous thread referred both to the anonymous comment on that thread, as well as previous comments I had seen by Camille somewhere. My initial recollection was that the prior comments were on your blog. If I misrepresented those prior comments as being on your blog, Kev, I apologize and assure you any error was unintentional. I must take your word for it that the comments I previously described did not occur on your site. Frankly, I have neither the time nor inclination to scan the archives of every blog I have ever read to determine where and when the comments were made. I certainly don’t need to prove to myself what I know I read, down to the silly schoolgirl joke about rainbow-colored umbrellas in tropical drinks.
As you say, people who live in glass houses should be wary of tossing stones. I just find it troubling that some, who would liken their cause to the struggle for gay rights, would then take various opportunities to imply that someone is gay even when that information has no relevance to an issue being discussed.
Again, I cannot say where those comments appeared; I can only say I recall them being made. I would have made an issue of it on an occasion prior to the anonymous comment on your blog, except I thought it would be wrong to draw even more attention to what should be a non-issue. I frankly know nothing of Mr. Kirby’s private life, including any orientation he may have. It is none of my business and really doesn’t interest me.
All I can really say is that I apologize to you, Kev, for bringing this useless fight onto your site.
Mouse wrote:
“Again, I ask…what are those reasons”?
– No offense to you Mouse but I don’t think that I need to go into detail with you about why I don’t believe that the whole thimerosal/autism controversy is just some big conspiracy theory. You are entitled to believe that it is. Good luck with that.
-Sue M.
Sue M. ” No offense to you Mouse but I don’t think that I need to go into detail with you about why I don’t believe that the whole thimerosal/autism controversy is just some big conspiracy theory. You are entitled to believe that it is. Good luck with that.
No Sue,
You do not need to go into detail but it would be nice if you could offer some sort of insight beyond “I have my reasons.”
Frankly I’d like to know what it is that motivates you to post here. I know you’re angry, that part is very clear, but are you angry with Kev, or me, or anyone else here? Why? Do you feel we’ve contributed to your family’s health problems? I just don’t get it. Sorry.
I thought we could identify and address your issues but you declined or ignored the offer. That leaves me wondering if your only motivation is disruption. I’d really rather not misquote or misunderstand you but the best way to avoid that would be to make yourself more clear.
Take a moment, collect your thoughts, then tell us what the problem is. Is that unreasonable?
I seem to recall the conversation: It was not anti-gay in the least. I think one of the posts wade may be recalling was written by me (but that wouldn’t be the first time that wade thought I was diva).
The blog conversation was really, if memory serves, about a certain fundamentalist religious sect popular in the States. The belief in this religion, and how it was helping them with their cause of fighting vaccines, was raised by members of eoh. This was in the summer, at the height of the rescue angels and the major angel’s massive, pride-filled PR campaign.
At that point, mention may have been made on one of the blogs (in the comments section) about Kirby’s former alliance with the advocate and act-up. Some of us were just wondering, aloud, how this was being reconciled among this religious group, known in the States, for their less-than-kind views on people who may identify as being gay or involved in gay rights.
I recall.
That was not one of the incidents to which I referred. Your comment actually made sense.
And the only comments of this sort that I have attributed to Ms. Clark were signed by her. After making that error once with you, I have become very wary about trying to guess.
I would guess vague recollections are probably frowned upon in a court of law.
Sue,
At no point have I suggested that there’s some kind of “conspiracy” regarding the anti-mercury activists. I was just asking if you applied the same standards to them as you appear to do to big drug companies, the FDA, and the CDC. If Big Pharma is motivated by profit, well, then isn’t Rashid Buttar? If the CDC is looking to cover the tracks, then why wouldn’t David Geier or Andrew Wakefield?
The answer you’ve given me (even though you’ve purported to NOT give me one) is that you believe the activists and don’t believe the drug companies or the government. It’s as simple as that.
And you know what, that’s fine. But you should probably then admit that your belief that thimerosal causes autism is not necessarily based on the weight of scientific evidence or even sound logical reasoning. You should admit it’s based on faith – nothing more, nothing less.
Wade, I don’t care what Mr. Kirby does in his off hours. What I care about is his credibility and the fact that in my opinion he deliberately spreads lies, like “vaccines contain aborted fetal tissue” for one.
It’s really amazes me that someone who says he thinks vaccines are “great” would say something like that, I was told that he said that at a DAN! conference, in which case that quote might have been caught on a video tape. The same statement is in his book, he quotes a woman as saying it and doesn’t correct it. There is no aborted fetal tissue in vaccines. The purpose of that statement is to mislead people into thinking that vaccines are made by grinding up aborted fetuses. Right? there’s no background information to explain how fetal cell lines are used in some vaccines, and where those cell lines came from or what a “cell line” is.
So, in my opinion, Mr. Kiryb is bizarre in his promoting of an antivax agenda, all the while saying that he thinks vaccines are “great”. People with AIDS, don’t need to be around a bunch of unvaxed kids. People with AIDS are more vulnerable to germs, they, like newborn babies are protected by “herd immunity”. Since that is the case, it seems to me that Mr. Kirby is actively putting people with AIDS at risk… and Mr. Kirby is a former AIDS advocate or something, he specifically worked for the Mayor of New York on some kind of AIDS taskforce, didn’t he? Did I get that wrong?
All you had to do was ask, Mr. Ranking, “are you saying that Mr. Kirby has less credibility because you think he is gay?” And I would have answered, “no, that’s not what I’m saying, that’s not what I said”.
But you and Sue went right for the homophobia card.
I *think*, that you, as a lawyer, knew exactly what you were doing when you did it. It’s your job to pound the table–or pound your opponent with pointless inuendo–when you can’t pound the facts. Right? Or am I wrong there?
Feel free to defend yourself.
Moving back on topic a bit – to Kev’s original post – I saw on the BBC news website today a parliamentary report, questioning safety of medicine for children (http://news.bbc.co.uk/2/hi/health/4672948.stm). The article states that 90% of medicines for new born babies and 50% of those aimed at children are untested after collating evidence from doctors. Near the end of the BBC article there is this quote:
“Professor Sir Alan Craft, President, Royal College of Paediatrics and Child Health, agreed better testing was needed, but urged parents not to be alarmed.
“We welcome the report from the House of Lords. It highlights once again that the majority of medicines given to babies and children are unlicensed. “Better testing would however result in a better situation for children. This should not alarm people, as the unlicensed medicines are prescribed by doctors with experience of working with children.”
I don’t know about you, but after reading this quote I was more alarmed. I assumed that most medicines used on children would have had had more rigorous safety testing. I had heard there were concerns about use of lack of safety data on use of SSRI’s on children (with or without an autism diagnosis). If you then add in the fact that the brain-chemistry of sub-groups of children could be different than the control groups, and possibly have other metabolic differences, then it seems like things are not well in the house of pharma.
I know Kev is concerned about chelation drug saftey studies – quite rightly, so. But I’m also concerned about the apparent widespread lack of understanding on the safe use of more mainstream drug applications, including things like SSRI’s. In particular, harking back to another point of Kev’s – what happens when you give ithe drug and the condition for which you’re prescribing never/ no longer exists – what’s the potential damage. This applies to all drugs, including chelation drugs.
What I don’t understand is how we got here — why is testing of childhood medicines so poor? Why has the FDA (or the EU equivalent) allowed things to get this way? Am I the only one who thinks this is a general drug industry problem, irrespective of what the drug is.
Mouse wrote:
“I was just asking if you applied the same standards to them as you appear to do to big drug companies, the FDA, and the CDC. If Big Pharma is motivated by profit, well, then isn’t Rashid Buttar? If the CDC is looking to cover the tracks, then why wouldn’t David Geier or Andrew Wakefield”?
– Well, first of all, I think that the CDC, FDA and Pharma companies absolutely NEED to be held to a higher standard as anyone else. Don’t they? They are the ones making decisions on what is going to be injected into health babies, right? If they can’t prove their safety then we are in a world of trouble.
-Sue M.
In order to find out how much you can dose a baby with aspirin or tylenol, you have to dose babies with aspirin or tylenol.
You want to sign your baby up to be the first one who gets a new anti-fever med or an antidiarrheal or whatever? Some baby needs to be the first baby ever.
How many studies have been done of babies’ brains using MRI or CAT scans in the US? I think the answer is NONE.
They have done some in France… the last time I heard this discussed, it was only being done in France. Which means that the French don’t care about babies or they know that the MRI is safer than we know, or they are braver, or something.
Don’t you think they ought to take a hundred babies from birth and put them in an MRI scanner every 2 weeks for a few years so people could learn what normal brain development looks like, up close?
You think that’s going to happen? I don’t.
The best researchers can do is cobble together information on 19 year olds and apply it to 18 year olds, see if the info on 18 year olds works on 16 year olds without hurting them… and so on down the ages and sizes.
Animal studies tell you a little, but not exact information on how do dose a baby. I pretty much has to be trial and error, because unless there’s a threat to a baby’s life from something like cancer and it’s worth experimenting on that baby with a new drug, no one is going to dose a baby with an experimental drug just willy nilly.
Ms Clark
Yes studies on children are problematic, in terms of finding out safe levels, but not impossible or unheard of. Vaccine efficacy (and I guess safety, where the time horizon goes out say a few months) are routinely done for new vaccines. For things like Tylenol I guess, like large areas of medicine, people take from whatever datapoints are out there. If there are documented cases of taking x amount of a drug ahas bad effect y, then x is an unsafe amount to take, and you work backwards. Safe radiation exposure and mercury levels, for instance , are extraploated back from overdoses.
I also am surpised that drug companies don’t rountinely (or perhaps they do), set up longitudinal studies of their drugs. Perhaps they should be made to do this, if they currently don’t. So if they introduce drug A, and make a guestimate of dosage for children, then they should be following some of these kids to find out whether bad effects occur. This would seem reasonable to insist upon – to track for side effects. Does the FDA not differentiate between safety levels based on trials, and categorised by patient attribute (whether they’re healthy or not, age, sex), and just guestimates. I think it’s a bit lax, if that’s in fact what they do, just letting the drugs on the market, without insisting on some followup – seems a reasonable price to pay to be allowed to have a drug out in the market. Perhaps this does happen — anyone know?
Ian I saw that report too and I must admit it did surprise me. As Camille points out there are difficulties with treating very young children but I think we need to find a way to address these issues.
That said, to me there’s a world of difference between attempting a legitimate course of medicine (i.e. using the correct medicine to treat the correct ailment) and something like chelation wherein the underlying issue has no tangible association with the treatment, where the underlying issue is not inherently dangerous and the treatment can be and where there are obvious chemical incompatabilities between the underlying issue and the treatment.
_”Well, first of all, I think that the CDC, FDA and Pharma companies absolutely NEED to be held to a higher standard as anyone else. Don’t they? They are the ones making decisions on what is going to be injected into health babies, right?”_
Sue, how is what you describe the CDC et al as doing any different from what Buttar et al are doing? Standards should be universal for anyone providing any level of care.
http://www.mindhacks.com/blog/2006/01/revolutionary_child_.html
Someone just sent me this link. I was right, as of not too long ago, there weren’t many in the way of MRIs of normal children’s brains to look at. Now there are.
The thing with experimenting on children is that the experimentation needs to be reviewed by an IRB. They need to look at the greater good to the child that might happen because he or she is participating in the study, the greater good to “childkind” (my word not theirs), and the immediate risk can’t outweigh the possible benefits.
An easy risk vs benefit ratio:
/Making kids eat only sugar for 4 weeks./
What could possibly be gained by that? The harm might not be huge, but there would be some harm done, and it is outweighed by no logically forseeable benefit to anyone.
A harder risk vs benefit ratio:
/kid has cancer, new drug might save him, new drug has lots of side effects and could hurt the child and not cure the cancer/
The only thing they can do is try to predict if the child could benefit, if they have really good evidence that the drug could cure all the kids with this kind of cancer, from animal studies or whatever, it’s easier to tell the parents that they might take the risk. Do you want your kid to be the first one in line? Yes, maybe if he’s tried everything else.
Big pharma isn’t the equivalent of Satan the Devil. Yes, there are greedy people in big business, but even the bottom line for big pharma is that they make more money if people get well. Dead people can’t buy drugs. People killed by drugs have families that won’t like those drugs and won’t buy them, and of course, sue.
Big pharma isn’t out to destroy a generation of children. This is bogus and in fact insane thinking.
And no, I don’t work for big pharma or little pharma or any kind of pharma and I don’t intend to in the future and I haven’t in the past.
Ballastexistenz has recently blogged on the very serious dangers of antipsychotics/neuroleptics, especially for spectrum people. I think people need to listen to what she’s saying.
One reason why we are missing some, maybe many, adult autistics is that many were locked away in institutions before and drugged. In the drugged state it’s easy to drown on one’s own vomit. How many people died in state schools and mental hospitals? Lots. But I”m off topic.
I think that longitudinal studies are done, but I’ve never worried too much about it.
This evening I asked a pharmacist about the amount of tylenol my ASD child was taking, was it safe? He explained that 4 grams a day was the limit that an adult liver could clear, and that more than that was dangerous. Well, I suppose he read a study wherein people took increasing doses of Tylenol to see how their livers were processing the stuff.
Someone must have collected the data that shows it’s dangerous to mix tylenol and alcohol.
Here’s an example that springs to mind.
If a person takes an overdose of acetaminophen they are treated with IV N-acetyl cysteine (NAC) to counter the liver damage and other effects of the acetaminophen. NAC itself can cause problems and there are a high percentage of adverse reactions, yet it is something that would be given to a child if she/he overdosed on Tylenol. IV NAC never underwent any clinical safety trials in children but I wouldn’t let that be a concern if my child’s life could be saved with NAC.
Compare that to a DAN! doctor like Bradstreet using IV NAC to treat autism, the rationale being that it will help to detox metals and reverse oxidative stress, etc. Why not? It’s used to treat overdoses in hospitals so it must be safe right?
Not a comparable risk vs benefit ratio.
“Dead people can’t buy drugs”
I need a t-shirt that says this ; ]
Kev
You said “That said, to me there’s a world of difference between attempting a legitimate course of medicine (i.e. using the correct medicine to treat the correct ailment) and something like chelation wherein the underlying issue has no tangible association with the treatment, where the underlying issue is not inherently dangerous and the treatment can be and where there are obvious chemical incompatabilities between the underlying issue and the treatment.”
I personally think that many of the DAN! doctors approaches are no more experimental than treatments given by mainstream doctors to patients on a daily basis. There are whole host of drugs whose purpose is to treat non-life threatening diseases, and there’s a whole raft of drugs whose purpose is to deal only with the side effecs of other drugs given for non-life thretening diseases.
I think that using IV NAC to reduce oxidative stress, if the child – ASD or not – has measureable oxidative stress, is resonable. Even someone like Bradstreet, who is a major hate figure for many people, isn’t claiming a causitive relationshio between IV NAC administration and autsim “cure”. He’s claiming reduction in oxidative stress, and providing glutathione. If children “improve”, what’s actually happening is that this intervention has interacted with some underlying metabolic imbalance, which is presumably (in your terminology) a comorbidity of their autism.
Isn’t the bottom line here each parent weighing up their feeling about the risk/benefit of any intervention , which does imply that they have an understanding that the benefit isn’t a ‘cure”. Sure, somone on this blog will chime up disagreeing with any intervention I could meantion, but that’s life — you’re never going to get agreement on issues like this. Chelation seems to be the bete noir at the moment, but IV’s were a few years back, and before that vitamin/mineral supplements and before that GF/CF diet. All of these interventions can be problematical if done wrong (e.g. lack of calcium with GF/CF). I think many parents who have tried these “milder” approaches, in the face of hostility and ridicule from family and their pediatrician, but who have had success in making their children less physically sick, which in turn has helped them mentally, have learned that doctors are not gods or even that smart a lot of the time (this includes DAN doctors). I have a whole raft of personal experiences with well regarded doctors who actually had an exteremely poor grasp on the scientific method. I personally don’t like someone pissing about with my by going down blind alleys because their egos or laziness prevents them from listening and thinking better.
Ian
“I personally don’t like someone pissing about with my by going down blind alleys because their egos or laziness prevents them from listening and thinking better.”
but couldn’t someone piss about simply because they’ve already weighed the risks and benefits and have come to a different conculsion? To say that ego and laziness are the root of the disagreement and that those who disagree don’t listen and don’t think all that well is really misplaced anger, IMO.
I can’t imagine a straight MD telling me not to chelate my child for any reason other than his/her desire to keep my child safe. Dr X doesn’t get extra money because s/he convinces me not to chelate. What’s the benefit for them? Say I didn’t listen and I dropped Dr. X and took up Do. Y (DAN!). In my experience, X losing a patient to another doc isn’t going to keep him or her up at night (certainly not for financial reasons).
But maybe I’m just lazy and not thinking better.
Bart,
“But maybe I’m just lazy and not thinking better.”
No you’ve just missed my point. I wasn’t talking about chelation, I was talking about boring stuff, like diahrea. I’ve had a straight MD telling me that I was stupid (quote) to think about GF/CF as a way to get my 3 year old to have non-smelly, loose stools. “Butter fat was all he needed”. Direct parental observation that this exacerbated the situation was ignored. He orderd milk intolerance test to shut me up. There was no followup, save a voicemail 8 weeks later saying he was allergic to milk. Oh,myes and he’d billed my insurance company $400 for the 15 minute consult.
Yes I do get angry from time to time (particularly with professionals in special education and medicine) who act less than professionally. Raising an ASD child with gasterointenstinal and metabolic issues is not helped by an MD simply sleep walking ontheir job. Likewise for special educators, who trot out boilerplate programs — where’s the I in IEP?
Kev wrote:
“That said, to me there’s a world of difference between attempting a legitimate course of medicine (i.e. using the correct medicine to treat the correct ailment) and something like chelation wherein the underlying issue has no tangible association with the treatment…”
– By “underlying issue” do you mean autism? If so, ok. If not, maybe chelation can improve some situations where a child is diagnosed with autism but is really heavy metal poisoned.
Kev wrote:
“Sue, how is what you describe the CDC et al as doing any different from what Buttar et al are doing? Standards should be universal for anyone providing any level of care”.
– First of all, I will state again… I am completely open to any and all studies done using chelation. I also do not go about screaming chelate, chelate, chelate your kids or else. Here’s the main difference to me in regards to the CDC/vaccines and Buttar et all/chelation. The CDC, FDA, AAP are responsible for making decisions on recommendations for vaccinations for our babies. Our HEALTHY babies. They owe it to us all, to make decisions based on the principles of first do no harm. They owe it to us to weigh very carefully, the fact that not all babies have a mature immune system, etc. We (the average citizens) look to them for guidance.
I will not argue that Buttar, et all don’t have ANY of this responsibility. Of course they do. However, the question remains, do any children with autism suffer from heavy metal toxicity? If so, possibly chelation is a proper treatment for them. Similar to chemo being a proper treatment for cancer (I can hear the screams of autism is not a disease similar to cancer)… I get it, but MAYBE heavy metal toxicity is… Buttar, et all are not forcing themselves on anyone… any parent is able to weigh the pro’s and con’s very carefully. We aren’t mandating chelation therapy on children (the same cannot be said of vaccinations)…
Listen, I guess it comes down to the fact that it seems most of you are not open to the idea that heavy metal toxicity could be a factor in autism or you don’t believe that it has been PROVEN to be a factor. Or, some may believe that chelation is way too risky to try no matter what your thoughts are on heavy metal toxicity as it relates to “autism”. There are many who do believe that it could be a factor and are willing to take the risks associated with treating this as a medical condition. I suppose that it is time for both “sides” to get together to work on testing, safety regulations, etc. It’s all good as far as I’m concerned…
-Sue M.
“Raising an ASD child with gasterointenstinal and metabolic issues is not helped by an MD simply sleep walking ontheir job. Likewise for special educators, who trot out boilerplate programs—where’s the I in IEP?”
Ian,
You are still THE MAN!!!
“I wasn’t talking about chelation”
Neither was I – feel free to change chelation to GFCF.
The point is that there seems to be a bandwagon culture of straight MD-bashing. I’m sure some deserve it. My wife and I have walked out of a ped-neurologist’s office simply because he was an ass. Given that there are jerks and idiots everywhere, should it not be expected that the same holds true for MDs?
What is a bit frightening is that a vocal and extreme minority dismiss straight MDs out of hand (unless the doc is aligned with a friendly organization like DAN!, yet the DAN! docs and parents, including me, seem to get a free ticket to experiment at will. What about sleepwalking, lazy, and not-better-thinking parents?
Who is going to decide who is acting responsibly and who is not? How will future generations judge our actions today? Will the ethics of current autism “treatment” be determined solely by the efficacy? If so, what if it doesn’t work – who’s going to get bashed then?
When I hear the knee-jerk MD bashing and Hulda Clark-praising, I really start to worry about these things.
BC wrote:
“Who is going to decide who is acting responsibly and who is not”?
– Good question… from both sides.
BC wrote:
“How will future generations judge our actions today”?
– With shock and disgust, I imagine. Mercury IN vaccines?
BC wrote:
“Will the ethics of current autism “treatment†be determined solely by the efficacy”?
– How about the non-treatment of SOME children with autism? Certainly, severe GI distress should be actually looked into instead of being blamed on “it’s common in children with autism”. What is ethical about not treating children who are obviously in pain?
-Sue M.
I think more research needs to be done into the idea that pesticides could affect a developing embryo. That’s a much more promising avenue, logically and scientifically, but it wil leave the chelation pushers to go back to pushing chelation on old people, and DAN! will have to move on to ranting about pollution in the environment… oh, wait, DAN! is already doing that.
The thing is there are all these parents with their hopes set on implicating thimerosal and they are like unreasoning dogs with bones and they don’t want to let go.
The rest of the planet thinks the American obsession with mercury and autism and our imaginary epidemic is a joke, with very few exceptions.
I think the money that might go into doing more research into chelation for autism would be better spent on research into alien abduction of autistic kids (they are switched with alien empty shell children, no really). There’s at least as much evidence for a connection between alien abduction causing autism as there is for mercury in thimerosal causing autism.
Just because a handful of people who have been brainwashed by the likes of Buttar and Bradstreet (handful compared to the majority of parents of autistic kids), just because they have political action committees, are connected by the Internet and have a PR man on tap, doesn’t mean that they are right or that they have the right to dictate how things will be done. See: Rick Rollens.
Bradstreet is not a maverick who just figured out how to help kids with various off label use of stuff. He’s a ridiculous boob who loves making money. He lies about his credentials in the most bald faced way, and you all don’t care. Same for Buttar, you give him a free ticket to credibility when he deserves no more than Dr. Donsbach the fake chiropractor who owned the clinic where Mrs King died.
“tell me lies, tell me sweet little lies….” all the DAN! parents are singing it.
Bart,
There’s definitely a bandwagon culture of DAN! doctor bashing and straight-MD bashing on blogs. Problem seems to be that it’s a rarity on any blog for it not to descend into a polarised position — everyone bashing DAN doctors as evil Tsatanists and gullible parents, and on the other hand straight MD’s as all total fuckwits and ASD parents as some sort of holy beings.
You raise some interesting questions, for which I’m afraid I have no good answers. I, like most parents, are winging it: we don’t have the answers, but neither does anyone else. Obviously the blogsphere attracts certain people who are quite assertive / know-it-all-wankers, but on the whole the rest of us are just trying to find our way through this moral/ethical maze. We read, we listen, we think and at the end of the day have to make decisions. Sometimes these turn out to be shitty decisions, sometimes they’re on the money.
The question boils down to this — is it morally right for a parent to take decisions about their children that may not agree with mainstream opinion (whether that be on education, health).? I often get the feeling from blogs, including this one I have to say, that others on the blogs know best, so I should obviously follow their advice and that anyone outside mainstream is a quack. Fortunately I have an in-built aversion to bullshit/proletyzing from any quarter – mainstream or not – but it is sapping to be constantly corrected by others about your choices, particularly with regard to education. You learn to expect that from family and friends but not from parents of ASD kids. Lets see a bit more support and a lot less judging.
Where’s the bandwagon for DAN! bashing?
Count the number of web pages pushing DAN! and other alt med cures and treatments for autism.
Then count the number of basically grassroots, parent and consumer, self-advocate driven pages that bash DAN! or contradict the lies and misunderstandings behind the sometimes dangerous DAN! docs and their protocols–like giving massive doses of vitamin A which can do horrific damage, (just one of their dangerous therapies).
The difference is staggering.
People who get hurt by or stung by alt med for autism don’t talk about it generally, they aren’t creating a “bandwagon”. Not like the DAN! folks have a bandwagon. They have revival meetings for crying out loud!
How many blogs regularly try to debunk the DAN! protocol, etc? 5 – maybe 6? How many non-profit sites are there that expose the dangers of DAN! and other protocols? One, that I can think of.
How much traffic do the anti-DAN! type blogs and that one site get compared to CAN, DAN!, NAA, TAAP, evidenceofharm.com, Buttar’s sites, Bradstreet’s sites, Neubrander’s site and disccusion group, I’m sure you can name a dozen more without trying too hard.
Regular government and university web sites are slow to respond to things like deaths of autistic children by chelation. The docs at the MIND institute, at least some of the biggies, know about what Dr. Jang did to that little boy, but they don’t discuss it on the MIND’s website. That’s out of their scope. Institutions don’t get in the middle of breaking news and usually avoid controversies. Privately they might be screaming in horror at what the DAN! folks are promoting, but they can’t scream in horror in public.
So, Ian, it should be very easy for you to avoid reading criticisms of DAN! avoid the small number of web pages that try to expose their lack of logical and scientific underpinnings.
Ms Clark
I’ve seen presentations from DAN people (quacks to you) on possible biomedical issues with organo-phosphate pesticides, and with hexane interfering with heme production. You say DAN is ranting about the environment, but at least they’re talking about it! It is a very fruitful avenue of research.
The disconnect between the medical research community into environmental effects and those who hold the purse strings is massive. The big mainstream autism research centers focus almost exclusively on genes. I understand you feel that thimerasol / mercury is a red herring and has generated lots of bandwith, but it does seem to have had diddly squat influence on the directions the medical research community has taken. Their research foci seem unchanged and largely ignorant of potential environemntal factors. Go ahead and bash Safe Minds / GR as much as you want (I enjoy a good rant as much as the next person) but save a little energy to let the NIH and CDC know they’ve a myopic research agenda.
Ms Clark
I admiit the Web is not overloaded with anti-MD and anti-DAN doctor sites – it’s hard to sustain the interest of new readers or a broad audience if all you’re doing is just ranting, as the blatant anti- sites do.
DAN (concept rather than doctor) bashing occurs most not in the blogsphere but on the ground. At the Early Intervention / Special Ed school setting, at the ASD support group, at the pediatricians, with your family and friends. Lack of medical training never seems an impediment to some choice homilies. If you’ve ever had a special education institution director tell you that you’re actons to relieve comorbidities in your child are just your way of coping with your child’s diagnosis – a sort of grieving process if you will – and that what your kid needs is SSRI’s, then you’ll know what I’m talking about.
Although I spend time on the internet, mainly as part of my work, and blogs are an important new tool, in reality (sorry Kev this isn’t a bash at you) average people with kids don’t have the time or inclination to read them. The discussions that impact our lives take place outside of the internet, and in general it ain’t pretty. Perhaps that’s why some of us come to the internet to find people who aren’t underinformed or who just give a damn about their kids future.
I have to admit to being in awe of people who are so passionate about stuff as you appear to be – even if I think it’s all totally misdirected. It’s a skill that I don’t possess.
Ian:
I think what some of us feel, who have been in this for a long time and prefer some kind of anonimity, is that the thimerosal/mercury debate has derailed other very legitimate research into ASD. Additionally, you might as well consider yourself and your child univited into all local ASD groups (for support/chat/play groups) in my specific geographic area unless you state that you agree that vaccines are the cause of your child’s ASD.
So, parents and their kids, in some areas of the U.S. are actually shunned by those who should be their peers because they may not agree and or may not even want to discuss the subject.
It’s tiresome. Mercury, vaccines, thimerosal — all the waste energy into this one “theory” among so many others. Off-hand I know of only two “autism” bloggers whose childre are older than mine … and mine is still a KID! Everyday, I see what many are taking as sage advice from novices. This bothers some of us.
Many of us have tried protocols/interventions that have come and gone. Some of us have tried protocols that did not work – and we watch them re-packaged a bit and offered as something “new”.
Many have tried chelation — it has been in use for decades for various maladies — and found it to be lacking. But that’s one that just gets constantly re-packaged and revived.
Derailed: That’s what this whole obsession with Hg has done. Look at all the .orgs and 501s devoted to this as the cause and the “removal” thereof the alleged cure. Researchers have been lost because they do not want to be involved in the politics in the U.S. about Hg/ASD. There’s a reason some have called those members who have everything in a strangle-hold the “Mercury Mafia”. IF you disagree with them publicly, they may well attempt to make your life hell.
You may have no idea of the numbers of people in the US who do not agree in slightest with the Merc/Aut “theory” because they have learned that it can be costly to speak out and speak against them.
I could go on – but it’s just tiresome to even type this out. But one more thing before I stop here: I have seen many, many kids improve well beyond what I have seen on a couple of stage-shows of late and not one those kids were chelated.
I wish you and your child well, Ian. Just know that most of us, who do not agree, are not arguing for the sake of arguing – we have experience, we have knowledge. AND you can be sure that just because we don’t post about that on a particular blog does not mean that we are not somewhere else advocating … many of us daily … for what we believe may be the best hope for our beloved children.
Derailed:
I have the opposite experience to you. if you state in ASD support/play groups in my geographical area (New York City) that vaccines/mercury/environmental insults are potential triggers then you will be told “what the fuck are you talking about” (politeness not being a strong point in NYC). I don’t know anyone in the general ASD support groups who has tried chelation. There’s a couple who have tried TMG and B6. What they talk most about is schooling — which approach you use, what school/program you’ve used/applied to. The kids are a mix in terms of age and in how severely affected they are. I’ve learned to not talk about the incredible success we’ve had with biomedical interventions – that’s the sure fire way to being labelled a nut. Instead I focus on informing them to best advocate for their own child in the special education system, which for many of us is a daunting and opaque process.
Perhaps New York is an island and the rest of the US has been taken over by the Mercury Mafia, but my own experience is that it has made virtually zero impact on the ground here. David Kirby lives within a mile of me, but he might as well be living on a different planet. Sure, online I know people locally who don’t think I’m a nut job, but they just make up a small percentage of the parents of all the ASD kids. People get their news/views on ASD from the schools (particularly at the EI level) or from the newspaper. Genetics, or God’s will, is viewed as the cause.
Ian
A year or so ago I was in touch with a researcher who had just come from a mainstream autism conference. While at that conference some pronouncement was made by some alt-med outfit, DAN! or someone, it was some kind of supposedly new finding. A reporter showed up at this conference and all the docs scattered. One of them who might be the only mainstreamish researcher who has a connection to DAN! but not a strong connection, said he would talk to the reporter.
Regular researchers are afraid to cross the mercury parent’s paths. Death threats really come from these people, sometimes, maybe not daily, but if not death threats then swamping them with hate mail and nonsense mail. They don’t need the hassle.
Eric Fombonne stepped forward and told them at the MND how stupid the whole mercury/MMR hypothesis was, and for his trouble the MIND docs stepped back and let him be essentially called a part of the worldwide conspiracy to protect manuafacturers of thimerosal, one of them later told Dr. Hendren, the director of the MIND that Fombonne was the same as the “antichrist”. Hendren didn’t correct him, which the dad seemed to take as tacit agreement.
You think your child has improved with biomed. Maybe he or she has, and maybe he or she wouldn’t have improved anyway. Some of the alt med stuff can help the kids to feel better, but has nothing to do with moving mercury around or chelating it or anything.
Chelating wouldn’t change one brain cell anyway, to make it less autistic or the child less autistic. Moving mercury around is accompanied by moving other metals and minerals around and that can be damaging.
Autistic adults have “a dog in this fight,” the mercury parents are powerful enough to get spots on national news, cable news, big newspapers, pay for full page ads in the NYT and USA Today… in the process the message that the mercury zealots with the money are spreading is denigrating to autistic adults….
NOT THAT ANYONE CARES OF COURSE!
(excuse the outburst, please)
ahem.
When I see autistic adults and parents who have been burned by DAN! getting equal time on “prime time” as stinkin’ David stinkin’ Kirby and the ever lovely Lyn Redwood, then I’ll calm down. And, NO, I don’t want to be on TV or on the radio or in the newspaper, I want to see a fair message represented there, not the denial of the existence of thousands of autism spectrum adults.
clarifying: It was one of the parents making the accusations to Fombonne who later told Hendren that Fombonne was the antichrist.
I read my post and it looked like one of the other researchers was saying it.
In my area the only local parent support group is aimed at parents of school aged Asperger’s kids. I don’t know how that came to be, but it’s not aimed to support non-verbal like kids, though some of the “asperger’s” kids aren’t going to be passing for normal any time in the next decade.
In Sacramento, it’s the all ABA and DAN! channel. If you want “floortime” basically, forget it, as far as I can tell. My ASD kid is 25 years old, so I don’t have much reason to contact “Families for Early Autism Treatment” which began in Sacramento. Talk about exclusionary. If your kid is beyond “early treatment” say he’s 25, just take a hike lady, we ain’t gonna help you.
Lenny is part of FEAT Sacramento and Rollens lives there, that ought to tell you something about daring to challenge DAN! in Sacramento. I don’t know how it is in the schools. If they aren’t buying the DAN! garbage, then bless them. I think that the DAN! message is just for the upper eschalons of society since all the poor folks in Sacramento (and elsewhere) can’t afford it even if they want it.
If DAN! dropped the thimerosal issue and went after pollution, and if they dropped quackery cures and the heavy handed abuse of “recovered”. I’d respect them.
Those kids they are exploiting as “recovered” don’t look like “recovered” to me. They don’t look much more normal than Rimland’s non-recovered son. And I want to see these kids and teens when they are tired and stressed. How autistic are they then?
There is no cure for autism, it doesn’t go away.
derailed said “There’s a reason some have called those members who have everything in a strangle-hold the “Mercury Mafiaâ€. IF you disagree with them publicly, they may well attempt to make your life hell.
You may have no idea of the numbers of people in the US who do not agree in slightest with the Merc/Aut “theory†because they have learned that it can be costly to speak out and speak against them.”
That is so true… and it is even perculating into other non-autistic groups. For almost eight years I was part of an Apraxia listserv group, I was one of the earliest members with one of the oldest kids. I had to leave earlier this year because the Mercury Mafia took over.
Earlier discussions on causes and treatments for seizures, procedures for determining Landau Kleffner Syndrome, Broca’s and Wernicke’s areas of the brain, language versus speech issues, various standard early interventions, how to deal with insurance, alternative communication systems and other things… started to be taken over by the “mercury causes all ills”. Despite telling people my son had his first seizures BEFORE he had any jabs (too old for HepB at birth!)… those who disagreed were sent several nasty-grams. One new member who had been an epidemologist was sent several when she tried to explain the concept of “herd immunity” (even though she had a medical degree, she was told flat out she was talking about).
The straw that broke the camel’s back was when I got a chastizing email from someone… who I was later told was actually employed by Bradstreet.
My conspiracy theory is that some of these DAN! guys were encouraging participation into other disability groups.
JB said, “Richard Deth showed us that it was not dead brain cells that were causing autism but, rather, impaired methylation due to the presence of mercury.”
No he didn’t. Not in any paper he’s published that I’ve read (cite one pls). He did use a methylation assay to assess a biological impact of thimerosal. The difference is huge. Just more overinterpretation from the usual suspects. If your heros told you that golf, horses, and saying “sophistry” repeatedly blows, would you abandon them without a second thought too?
“He stated that about 80% of kids could improve by adding methyl B-12 since these kids with impaired methylation couldn’t make their own.”
Sounds like a nice opinion.
“He also showed us that it was impossible for kids with no methyl B-12 to pay attention to anything.”
What, did he come over to your house and give a practical demo? Where was this demo and how is he qualified to make any statement of this nature?
“That explains why you can scream in their ear and get zero response and why many parents have their kids hearing checked before they figure out that they are dealing with autism.”
Jesus H. Christ. Maybe they just don’t want to listen to someone screaming at them. My son won’t look anyone in the eye unless forced to do so, and as a result he looks as though he’s not listening. Yet he’ll recite back a conversation verbatim if asked.
Mr. Best,
Dr. Deth did not show that thimerosal causes autism. His research design can not show that. Does that make sense, or would you like me to explain why this is the case?
Clincal data is not research and should not be given in place of it. These data fail to offer control for the 7 major threats to internal validity.
Given that, one can not claim that Methyl B-12 shots show 90% of autistics improve under them.
So, because Neubrander says so, ignoring the fact that some of his patients (or their parents) have had bad experiences with him personally, and with his MeB12 shots, all kids showing any sort of problem should be given MeB12 shots at high doses either every day or up to 3 days, depending on who you talk to, or maybe they need nasal spray if they don’t want to go the Neubrander way…and you believe JB Handley that it’s the nasal B12 that got his child to talk. Then if they “improve,” which some will just by chance and because their parents are watching them like hawks for improvement and all full of hope (which affects the kids) … then they all should get chelated?
Where’s the mercury test from Doctor’s Data lab come in?
I thought that all ADHD and speech delay and apraxia and certainly all autism was caused by mercury poisoning? Why not just jump straight to chelation with the strongest stuff available at the highest doses?
Now, Dr. McCandless, she says, even if a kid’s blood tests on immune cells turns up normal, she still considers the kid to be immune comprimised and they all need to go on low-dose Naltraxone (big pharma drug isn’t it?). Nothing has cured her grand-daughter who is a “non-responder,” and nothing has cured Bradstreet’s son or Bernard’s son or any of the other big names, except Buttar who cured his son with td dmps, but that doesn’t work for all kids so he’s on to something else, that makes him more money per kid.
Jang says magnetic clay baths are good, Mielke says no they aren’t and Andy Hall Cutler thinks they are a bad joke. Andy says IV EDTA for autism is a horrific mistake and Buttar thinks it’s the way to go. Bradstreet says autistic kids have problems with oxidative stress and so he pops them into hyperbaric oxygen tanks to up the oxidative stress, and then decides to see if that’s a good idea or not, since autistic kids are supposed to suffer from what he is inducing (oxidation). Some other female on Erik’s site says if women would only eat yogurt and sauerkraut all autism would disappear from future babies, and that feremented foods cure autism.
Lots of folks say it’s GFCF and other say it’s a mistake if you aren’t doing the specific carbohydrate diet. Put your kid in a bathtub full of Epsom salts, unless of course it has mercury in it, but you probably won’t know if it does or doesn’t.
Massage his head to move around the plates in the skull that don’t move, take him to a chiropracter, some kids have been cured just by chiropractic adjustments. Try an aluminum foil helmet, one mom swears it cured her son. Then there is Penta Water and magnetic mattress pads and saunas.
Remove your amalgam fillings ASAP even if you can’t afford to, if you can’t, try ALA.
Whatever you do, don’t vaccinate your kids or yourself (or your dog) because vaccines are evil and foisted on us by the “axis of evil.” Forget that mercury is all around us and has been for ages.
and All autism is is mercury poisoining, and all asperger’s is is mercury poisoning. But Asperger’s isn’t autism unless you happen to want it to be for the purposes of counting and epidemic or you are talking about Lujene’s son who is both autistic and Asperger’s, but only after he was 7 years old. Lyn Redwood’s son was dxd PDD,nos, as a pre-schooler and all these years later acts exactly like a PDD,nos kid, but he’s cured because of all the chelation and the Secretin.
All along make sure your kid is getting other therapies, but when he starts to learn something credit the biomed.
I so do not think so.
Ian:
Almost every.single.ASD.child in my locale that I know of/know personally is either chelating or has been chelated. It’s ARI/TACA/MIND/FEAT/CAN territory. What’s more, I would never employ the term Mafia lightly – not ever – unless it fit. In this case; in my direct experience it most certainly does.
BC said,
“Jesus H. Christ. Maybe they just don’t want to listen to someone screaming at them. My son won’t look anyone in the eye unless forced to do so, and as a result he looks as though he’s not listening. Yet he’ll recite back a conversation verbatim if asked.”
My son did the same before we started chelation treatments, now he resonds to the conversation and makes excellent eye contact, he also hugs me and displays emotions.
BC also said,
“Who is going to decide who is acting responsibly and who is not? How will future generations judge our actions today? Will the ethics of current autism “treatment†be determined solely by the efficacy? If so, what if it doesn’t work – who’s going to get bashed then?”
What if does work?
Won’t you feel like a complete ass?
GotToGo,
You addressed Bart, but what you said merits additional responses.
All children make progress, even in the absence of treatment. This is just as true for autistic children. This has been shown in research.
In other words we don’t know if a tin foil hat would be any more helpful than chelation for your child. A way we could likely know is if Rimland and company had decided to do real controlled trials of chelation. This burden is entirely upon them, and they have miserably failed to make progress as to setting up a study until recently.
This is not just a scientific issue this is an ethical problem. Even if Buttar et al. get vindicated tomorrow, this issue should go down on the record as an example of how not to advocate for a new treatment.
The problem is, the way this treatment has been advocated for looks more like some form of Orgone Earth Energy, than it does a brand name fever reducer.
You wrote:
“What if does work?
Won’t you feel like a complete ass?”
There are some things we can not possibly know. Science can not prove that chelation has never helped someone somewhere. In the same way, we can not know that chelation will not help your child. I the same way the we can’t prove a tinfoil hat didn’t help sme autistic child.
Simply put; the concept that a given treatment just might do the trick is really not a good reason to advocate for it.
It doesn’t answer for issues of safety and validity. Or, you can advocate for it, but others (including me) will criticize this along science and ethical lines.
“My son did the same before we started chelation treatments, now he resonds to the conversation and makes excellent eye contact, he also hugs me and displays emotions.”
How nice, when you can prove it was the chelation and not normal development over X months / years. Sorry, not convince.
“What if does work?
Won’t you feel like a complete ass?”
John, your Rescue Angel scare tactics might have worked if you hadn’t bored me with them long ago. The question I posed was open ended and not accusatory – I can see now it went over your head.
Well Said Derailed !! Standing Ovation!!
Derailed wrote:
” Researchers have been lost because they do not want to be involved in the politics in the U.S. about Hg/ASD. There’s a reason some have called those members who have everything in a strangle-hold the “Mercury Mafiaâ€. IF you disagree with them publicly, they may well attempt to make your life hell”.
– Oh so sad for you. Let’s talk about the abuse put upon Wakefield and the Geiers to name a few. I imagine that there are more and more scientists, researchers, etc. out there who are beginning to see the light of day but who feel stifled to acknowledge the possible connection between mercury/autism due to the ton of cra*p that will fall on them if they start talking…
No sympathy,
Sue M.