Saturday, March 31, 2007

No More Silence



I'm a get along kind of guy. I like to build concensus, and not rock the boat too much. I like to keep my mind open to different opinions, and different ways of doing things. But sometimes you have to draw a line in the sand.

Twenty years ago, the gay community was beseiged by a disease that was killing them off, and no one seemed to care. Several people in the gay community in New York came up with the "Silence=Death" campaign. It was a simple campaign to raise awareness amongst all of society of what was happening. They didn't have the internet, so they plastered posters all over town looking much like the one above.

I believe that the autism community is under a somewhat similar (though not yet as devastating) onslaught in this day and age. There are two main things that I see that are killing autistics. One is the physical and psychological abuse that is going on in institutions (and sometimes openly in society). The other is subjecting autistics to experimental treatments that have no scientific proof, and have killed people that were being treated. The biggest offender in this category is chelation (now sometimes referred to as "detoxification").

While I still respect any parent that respects and loves their child and is just trying to get the best interventions for them, I can no longer stay silent when they mention chelation as a possible option as treatment. Sometimes in the past I have not been as vocal as I should have been in informing them of the hazards of chelation. At the risk of losing friends, and of getting tossed off one local message board I am on, I can stay silent no longer.

Description of deaths from chelation can be found here and here. A good discussion of a 5 year old autistic child's death from chelation can be found on Kevin Leitch's blog here.

We have this great disseminator of information, the internet. I resolve to respond whenever I come across potentially dangerous practices. Not to denigrate the individuals involved, or to espouse one way of doing things over another. But to save lives. Period. And I encourage all of you to do the same.

19 comments:

kristina said...

The perspective you bring to these sorts of discussions as a medical professional is invaluable. Regarding some of the recent back and forths on Autism Vox in which chelation and "detox" figured, good science and good sense are more than appreciated.

Ms. Clark said...

I'm not sure, but the next death by autism cure might be related to HBOT, as it is practiced in the homes of various parents. They get a Vitaeris 320, usually, which is big enough for two people, and instead of just inflating it with air as the thing is supposed to be used (it's kind of silly, but that's the use it's approved for) they take two large oxygen concentrators and pump the oxygen into this big nylon balloon in various gerry rigged ways, some of which are more dangerous than others, but they are all dangerous.

I am amazed that we haven't heard of houses burning down or children going up in flames in one of these set-ups. They are rented this way by Bradstreet and Neubrander, the last time I checked.

it's really scandalous.

Most parents aren't doing IV chelation, but I still read about parents doing IV chelation with EDTA for their kids, it's hard to say how careful they are being to avoid disodium EDTA, the really dangerous (and painful to receive) stuff.

I don't think too many parents in the US are doing high doses of Vitamin A, that nearly killed a three year old boy from Nevada whose DAN! doctor, Miriam Jang, had blithely recommended the high doses based on some whacked out idea that it undid damage from measles virus and would make the kid normal.

I wonder how many kids are getting junk in their B12 shots and IV glutathione and IV vitamins and what kind of viruses they might be getting in gratuitous frequent use of IVIG. Oh, then there's the chance of dying after being scoped and damaged by someone like Krigsman who tries to go as far as he can with the camera.

I think those are the big concerns, apart from leaving kids unvaxed and the long term damage possible from some treatments, and the mental damage of telling a kid that he's full of toxins and he could be normal if he'd just take this pill and that potion like a good boy.

My word I despise DAN! docs.

Different topic, I saw the poster at the beginning of your blog entry and recognized it's meaning, and then read your first sentence as "I'm a get along kind of gay." and I thought, Wait a minute, that doesn't sound right.

Ms. Clark said...

I should have commented on your other point. I wish there was a way to save the autistics in institutions, Sarah Crider died not very long ago because she was over drugged and under monitored. She inhaled her own vomit. I hope she died in her sleep and didn't suffer. I think thousands of autistics may have died this way since anti-psychotics were invented.

I think there are autisitcs who are homeless, too, and very vulnerable.

Zaecus Celestis said...

Thank you.

As the recent Discover article shows, the bad science is, to use the journalistic term, 'sexy'. Any ideas on how we can make the -good- science as appealing as the bad stuff is without having to wait for more bodies, dead or damaged, to parade past the journalists?

daedalus2u said...

I agree with Ms Clark, the next death is likely to be from HBOT. I looked at the Vitaeris 320, and the manufacturer is careful to supply compressors that deliver only air, not oxygen. They don't mention oxygen on their entire website. No doubt for liability concerns. The materials of construction of it are simply not suitable for oxygen. Normal clothing is not suitable for oxygen either. All it will take is a static spark in a sweater in pure oxygen and the entire device will be engulfed in flames in less than a second. The device will rupture, but the 3rd degree burns over most of the body will likely not be survivable.

The problem is, reality is much more complicated than can be conveyed in sound bites. It isn't "sexy". People who understand reality (ie scientists and people with Asperger's), tend to not be considered "sexy" either.

I really do think that I have considerable insight into ASDs, from my own experience and my research into nitric oxide. Getting anyone in the autism community to pay attention sufficiently to spend the time to learn sufficient background to understand where I am coming from, is not something that I have been able to accomplish yet.

The "problem" with autism, isn't the neuroanatomy and the brain structures per se, rather it is the connectivity in the brain, which is regulated in real time. When the connectivity drops below a certain level (the percolation threshold), the functionality falls apart (a meltdown). Keep the connectivity above the percolation threshold, and meltdowns will never happen (under normal circumstances).

It doesn't "cure" ASDs, as far as autistic individuals are concerned, the neuroanatomy is the same, the mirror neurons still don't function as in an NT. Personality isn't changed. But with no meltdowns, and less anxiety and greater connectivity, the brain works better.

I really do think I do have made an enormous advance in understanding ASDs, but getting anyone to pay attention is something I don't know how to do.

I would appreciate any advice, pointers, help, etc that anyone could give me. My corporate email is dwhitlock at nitroceutic dot com.

I am trying to commercialize my bacterial source of NO. I don't want to take the route that the DAN quacks and the anti-mercury quacks have taken. Without a clinical trial, I haven't proven anything. But to do a clinical trial, I need a clinic. As someone with Asperger's, the interpersonal interactions necessary to get something like that to happen are quite a barrier.

daedalus2u said...

I wanted to post a clarification regarding what is "sexy". I have never met Ms Clark, so I don't want anyone (especially Ms Clark) to think I was speaking about her in my characterization of ASD individuals as "non-sexy". Rather I was thinking about the NT icons of sexuality, people like Tom Cruise, Paris Hilton. People who never let facts or logic get in the way of their beliefs.

As I see it, the NT notion of what is "sexy", is like the peacock's tail. The reason (and the only reason) that peacocks have a tail is because peahens find it "sexy".

I think that part of what constitutes the elusive "chemistry" of individual attractiveness is non-verbal communication mediated by mirror neurons, a form of communication that ASDs are quite poor at, and so necessarily appear "non-sexy" to NTs.

I think a very robust mirror neuron system is like the peacock's tail. Somewhat detrimental because it allows (or actually forces) people to believe in a distorted (and wrong) version of reality. Just like the peacock's tail makes preditor avoidance more difficult. I suspect under difficult times, the peacock's tail would be diminished, just as under difficult times development of mirror neurons is diminished.

Club 166 said...

Thanks for your comments, everyone.

Kristina, thanks for your kind words, as always. I'm just a "simple country doctor", but do have a little expertise in some of the subjects that are discussed.

Ms. Clark, I have only been vaguely aware of people recommending HBOT for autism up to now. I assumed that they were buying time in commercial and hospital chambers, not it some "do it yourself" home HBOT (silly me, I should have known). This sounds potentially dangerous, indeed, though I don't know what pressures they are developing, what diving tables they are using, and how they are incorportating O2 into all of this.

If you have some references where I can educate myself on what people are doing, I'd like to look at them.

Zaecus, I think autism science needs the help of Bill Nye, the Science Guy. He makes any science sexy and cool.

daedalus, I'm still not sure where your NO theory will go. NO is a part of so many things, it's kind of like saying oxygen is involved in autism. In short, I think there's a long ways to go before specific mechanisms that may affect behaviors are elicited, but I wish you well. I don't have any connections with people doing this kind of research, so can't help you there.

daedalus2u said...

NO physiology is a lot more complicated than oxygen physiology (by multiple orders of magnitude). Virtually every O2 using enzyme is actually regulated by NO. It is part of what directly sets the ATP setpoint and ATP couples to just about everything.

I met Ferid Murad (1998 Nobel Prize on NO) at a Gordon conference where I presented on the opening night, and he offered to help me, but when I sent him my (earlier) stuff on autism, he said his basic research buddies wouldn't be of any help to me, that I needed someone with "clinical" experience and connections.

Daisy said...

Bill Nye interested in autism science? Who knows -- maybe he's on the spectrum himself. And he's cool, very cool! (<-- says the teacher who loves science)

daedalus2u said...

More about NO. It is true that NO is involved in thousands of pathways as a signaling molecule (unlike O2 which is not used as a signaling molecule (typically)) (there are no sources of O2, only sinks).

That is why basal NO is so important in everything. Because NO is already in the "active range", that is physiological processes are actively being regulated by NO, any change in the basal NO level will affect the output of those processes.

NO inhibit cytochrome oxidase. Under conditions of "stress", NO is lowered, to disinhibit cytochrome oxidase to maximize potential oxidative phosphorylation. I think that is the mechanism by which "stress" causes a "meltdown". It is a "feature", pushed to a dysfunctional level by the pathologically low basal NO level that people have.

Low basal NO affects everything in the characteristic "stress" direction. I think that the ASD phenotype is the "stress" phenotype. The "stress" reactions are on a hair trigger because a fast response to "stress" is what you want when stress is the rule.

That is why putting kids under stress makes them worse.

Fore Sam said...

I think your perspective is a little off here. Medical malpractice, not the chelation killed those kids.
Two unlucky parents whose kids were made autistic by incompetent doctors to begin with stumbled on two other incompetent dostors who finished the kids off.
Now, the question should be, should parents risk doctors killing their kids with malpractice during chelation or should they do nothing and just hope their kid isn't one of the ones who drowns or gets forgotten in a 100 degree school bus or runs into traffic while deliriously happy about the joy of having autism?
The other option is to follow Andy Cutler's chelation protocol, thereby bypassing the medical profession and not taking any more chances of medical malpractice harming your kid.

Club 166 said...

Daedalus-OK, OK, the O2 analogy was a bad one. I was using oxygen as an analogy just because it is so ubiquitous, and necessary for cell life, not because it acts as a transmitter. I guess I could have used something like acetylcholine or cGMP, but then a lot less people would have understood what I was getting at.

As I said before, you have an interesting theory. But until you can do a whole lot of measuring in autistics and NT controls, it remains a theory. I still think a good initial (though not definitive) study would be to identify the incidence of autism in populations with known increased production of NO, namely the Tibetan and Bolivian mountain dwellers.

ForeSam-Let's see. I agree that the doctors doing the chelating were committing malpractice, and I agree that we should not be silent when conditions exist that allow kids to be left on shool buses or any other abusive situations. Obviously I disagree that doctors caused the autism and that chelation should be performed. Chelation is potentially dangerous, even when properly performed. I believe that individuals have the right of self determination, and can choose things for themselves that may even be harmful. I do not accept that that right extends to the right to do known harmful things to your kids, when there is no proven benefit to the treatment.

I have no problem with people experimenting with different treatments that have a very low risk of harm. Things like the GFCF diet, oral vitamin supplements, mud baths. If asked, I would advise against many of them, but wouldn't object to people choosing to try these things.

So my count is we agree on two things and disagree on two things. This means we agree as much as we disagree. That's a good start.

Ms. Clark said...

daedalus2u -

I understood what you meant by your "sexy" comment. No offense was taken.

Club 166,

My main blog entry on HBOT, "Playing with Fire?"

http://www.autismstreet.org/weblog/?p=36
http://www.autismstreet.org/weblog/?p=60

Dad of Cameron on the autismstreet blog has a little background in the whole idea of partial pressures and O2 concentrations. You can probably get specifics from him, that I can't give you.

The Vitaeris 320 doesn't produce much pressure, as you can imagine, it's a nylon bag. It can make a difference for people who get altitude sickness and who can't get to lower altitude immediately(it's licensed as a Gamow bag), but there's not enough pressure to make a big difference, so what they are getting is high risk and little added benefit, even if you did believe that extra oxygen was totally fabulous for autism.

If you read my blog, "Playing with Fire" you'll get a description of some fears about the way the O2 is entering the nylon bag, that can cause an explosion. In addition, inside the bag it gets stuffy and the mom and kid are supposed to be in there for a while so some of the bright dads (maybe moms) hook up a gerry rigged air conditioner to cool the O2 as it's going in the bag...

Then they're so expensive that the parents have them for a while and then they try to sell them to each other. No really. You can just imagine them passing used ones between each other along with the O2 generators.

They talk about going in and buying them together and sharing, but one bright guy who lives in Sacramento pointed out that if one person buys it and charges his friends to use it then he's practcing medicine without a license or something...

The bags are used in beauty salons for pretend wrinkle cures or something, but I don't think the salons use added O2.

The guys who are prescribing the O2 concentrators to go with these OPENLY say like... oh, Jim Neubrander, maybe, and Jeff Bradstreet, maybe, these gentlemen are breaking FDA rules, maybe they are breaking Federal laws, I don't know how far that goes, but it's obviously dangerous and these people just blithely do it. You can see video of a Neubrander patient mom getting into the mHBOT bag, it's on the Neubrander site, and you can see an O2 concetrator sitting there next to the Vitaeris 320.

It's like all these people are "running with scissors" and the FDA is looking the other way, where's big gov't when you need it?

daedalus2u said...

Ms Clark, I was sure you would not be offended by my "sexy" remark. My clarification was more directed at NTs, who I suspect have difficulty understanding that to ASDs, a discussion of volcanos is much more "sexy" than one of nail polish.

Does the manufacturor of the Vitaeris 320 know it is being used with O2? If they do, and do not attempt to stop it, they open themselves up for liability when an incident happens. No doubt their insurance carrier would object too, as would the producer of the O2 concentrator, as would the insurance company providing the home owner's policy where the apparatus is being used, as would the local fire department, as would the carriers of the DAN Dr's malpractice.

When an incident happens, everyone even remotely involved is likely to be sued. Such is the nature of personal injury liability in the US.

Club 166, the main source of cGMP is from guanylyl cyclase, when it is activated by NO.

I have posted a new blog today, which starts to give background in the complexity of NO physiology (Background and summary NO and ASDs).

There are only a handful of labs in the world that I would trust to do such measurements. I am working closely with one of them, but he is in the process of moving from Boston, to the UK. He will have a much better set up there, and barriers to human trials are a lot lower in the UK, but realistically it will be 6 months before he can do anything. While he is on the spectrum (a little bit, but I don't think he appreciates it), ASDs are not the real focus of his research. But there is plenty of stuff that NO does that is. He has measured the R-SNO thiol content of my blood, and it is the highest he has ever measured in a human "by a lot". He has no doubt that I am on to something very big and very important.

I don't think which populations have high vs low NO is really known. Certainly there hasn't been anything published that really demonstrates high vs low. Which NO species are actually important isn't known either.

Even in the NO research community there is a tremendous misunderstanding of how complex NO physiology is. Ferid Murad has said that he thinks we understand ~15% of NO physiology. I think he is off by at least 3 or 4 orders of magnitude, or more.

The focus of most of the NO treatment oriented research is on how to raise NO levels pharmacologically using patentable drugs. I don't think that approach will work. It is simply too complex and too coupled to change it in a few pathways without affecting lots of other stuff.

There was a recent publication of a trial of viagra on obstructive sleep apnea. One dose made it worse. Not surprising (to me). Breathing is regulated in part by high NO. Viagra inhibits the phosphodiesterase that cleaves cGMP, and so will inhibit nitric oxide synthase by increased cGMP feedback. That lowers NO effects mediated by non-cGMP pathways (one of which is breath initiation).

You need to increse NO "upstream", by a "natural" process that is under phsyiological control. That is what my bacteria do. The amount of NO/nitrite they produce is regulated via sweating.

Zaecus Celestis said...

I saw a comment on a post somewhere else where, I believe, you suggested that we needed something like the "silence=death".

How about this:

exclusion=extinction

I've been in a few discussions with people who realize that this is all about 'eliminating the different'. Once all of the obviously different are gone, then they start in on the not so obvious--with autism, they can nail both with one prenatal test--until eventually, everybody's exactly alike.

Unfortunately, a species without diversity tends to fail the final, and it's a very final final.

Club 166 said...

exclusion=extinction

Zaecus, I like that. I like that a lot.

I might just have to get a t-shirt made up with that on it.

Chasmatazz said...

Thanks for your post. We're increasingly drawing parallels between gay rights activism and autistic activism. It heartens me to see this catching on.

The pink triangle was originally a symbol gays were forced to wear in Nazi concentration camps, I believe. It's been usurped by modern gays, but mostly as a symbol of gay oppression, and certainly not to the degree that the rainbow flag has come to symbolize the gay community.

The "Silelnce=Death" slogan was coined by a group called "Act Up," a gay AIDS activist group famous for its disruptive demonstrations. I remember a time when the "Silence=Death" stickers were everywhere in New York City. Some thought it was too negative; there was small counter-movement to spread the slogan "Action=Life."

Zaecus Celestis said...

Chasmatazz, unfortunately, the reversal of what I came up with is "inclusion=evolution", and I can see a lot -more- people balking at that sentiment than the negative one I came up with.

Club 166, glad you like it. :-)

Anonymous said...

Although I agree that chelation should not be something taken lightly, I do believe that it does have its place in medicine and the treatment of autism. The above mentioned incidents of death were due to calculation errors if one cares to research the incidents further.

Children with heavy metal toxicity is very real. I know many families who have done chelation and had there children not only pass out metals in their urine but achieve unbelievable changes in there mental status. While I believe this treatment is a viable option, I do not think it is for every autist.

Our young son has been "diagnosed" with autism but he has a more pressing issue (and I believe related to mental state) of diarrhea for the last 1-he is almost 3. I do not believe he is text book autistic and I do not believe he would be a good candidate for chelation. His problems is with a bowel infection of some kind....one that just now his doctors are finally taking seriously!

My last comment about chelation is that don't believe everything that you read ...talk to people who have actually done it, dotors who prescribe it and maybe even those who are aware of how these tragic cases went wrong. It was not the chelation its self it was human error.