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Olmsted on Autism: Welcome to Illinois

OLMSTED Managing Editor's Note: When my Mia was 8 years old, we took her to a ped. endocrinologist with concerns about early puberty. She also had a severe seizure disorder. The endo, a Fellow from Dartmouth working at University Hospitals of Cleveland did the routine tests.  Blood, x-ray of the hand bones. Mia was just on the cusp of what would be called "precocious puberty."  He offered me Lupron straight away. I asked, "What will Lupron do to her seizure disorder?"  He had no idea. In fact, he kept saying, "The social stigma of a girl getting her period in third grade..." And I kept responding, "But she has autism and the social stigma is a non-starter. This is at best a convenience issue for Mom."  He wanted her on Lupron but couldn't give me any facts as to how it would affect her overall health, beside her breasts disappearing and her underarm hair falling out.  I declined the Lupron out of fear for what it would do to Mia's seizures. Mainstream docs prescribe this drug every day, to children.

By Dan Olmsted

I'm at the Courier Cafe in Urbana, Ill., so named because the building was the site of the old Courier newspaper. How fitting that I'm here to meet my high school English teacher, with whom I've kept up over the years, and fill her in on the latest on the book I'm co-writing with Mark Blaxill on the natural history of autism. I'm going to read her a passage about the first child diagnosed with the disorder -- "Donald T.," in 1943, and how treatment with gold salts for juvenile rheumatoid arthritis also had a remarkable impact on his autistic symptoms, according to his family.

I'm here first, so I stop at the counter for a paper -- in Illinois, everyone reads The Trib, even those who grew up "downstate" like me. It used to be a mean, bigoted, reactionary rag with a full-color American flag  and Democrat-baiting cartoon on the front page every day. Now it's just another bankrupt big city paper looking for a way out of irrelevance and insolvency.
 
And then it hit me -- the huge headline, "'Miracle Drug' Called Junk Science -- Powerful castration drug pushed for autistic children, but medical experts denounce unproven claims." There was a picture of Dr. Geier and Mayer Eisenstein and a mother with her child who has autism. The story was about the debate over Lupron and whether it was helping the hundreds of children taking it.

Of course, this weekend's Autism One Conference -- at which the Geiers and Eisenstein are speaking -- was mentioned. This kind of story is what, when I worked at the paper in Danville, we called a "precede." The Shriners are going to meet, let's say, so you figure out a story to write the day the convention starts. Maybe the latest on a child treated at the hospital for burn victims -- that sort of thing.
 
Well, this "precede" tells you what The Trib thinks about Autism One and the people like you and me who will be attending -- we're either quacks, or the desperate victims of quacks. The article lumps Lupron -- about which I know nothing, and have no opinion -- in with alternative approaches like diet, about which I do know something, and do have an opinion. Restrictive diets do work for many, many -- though not every -- child with autism. They are safe, they work best with the very youngest children, and it's almost a dereliction for a parent of an autistic child not to give it a try.
 
But you see what's up here when you read the quote from Alison Singer and the one from Simon Baron-Cohen, without placing either in their proper context. And then you get to this comment about Mayer Eisenstein: "Eisenstein, a family doctor who preaches a message of home birth, vitamins and vaccine safety, said he treated 'virtually no' autistic children in the past."
 
Dude! He has treated virtually no autistic children because there are virtually none among the unvaccinated children in his medical practice. And virtually none with asthma, either. This is what you call chutzpah -- turning the fact that a doctor has not treated many autistic children, for the simple reason that his practice is not creating them at a rate of 1 in 150 or more, against him!
 
This is the first in a two-part series, The Trib says, and the teaser for Part 2 suggests they are going to bear down on Mayer. This is the pattern -- anyone who gets too far out there on this issue gets destroyed. And any evidence that suggests a link between vaccines and autism -- like the lack of autism among Homefirst patients, or the Amish -- gets tainted through guilt-by-association or some other irrelevant factor and reduced to mush.
 
Mind you, if The Trib thinks Luprin is dangerous, by all means let them investigate it. The issue here is proportionality -- for instance, as far as I know, they've never enquired into the virtual absence of autism and asthma in Mayer's practice, or done any original investigation into the huge surge in autism cases. And it's also a question of context; those of us descending on Chicago this week are not all about Luprin or chelation or any one thing. We're about finding the truth and helping sick kids -- a lesson we learned from Bernie Rimland. We have allies, although you'd never know it from articles like this -- no Bernadine Healy mention, and I'll bet you breakfast in the overpriced restaurant in the Westin that she won't be in Part 2, either.
 
But meanwhile, back to my reasonably priced eggs and corned beef hash and breakfast with my high school English teacher. I can't wait to read her the part of our book about how the very first case of autism recovered -- according to his family, not to me -- after being treated with an unconventional drug not approved for autism, and how that fact managed to stay buried for 75 years while doctors blamed the parents, their genes and whatever else they could dream up, and hundreds of thousands more children acquired autism. Someone treated Case 1, and the child go better? Arrest that man!
 
See you this weekend -- and welcome to Illinois.
--
Dan Olmsted is Editor of Age of Autism.

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Autism, Dyslexia, Attention Deficit Disorder are all potential pitfalls when a child doesn't have proper child development. I think all families should be wary of this.

Trina (at the Chicago Trib) should lose her job for such a poorly written, poorly researched article... she mixes and compares experts from divergent fields... and arbitrarily picks Baron-Cohen as someone qualified to dismiss Dr. Geier's work. (just an example) It's so slanted I'd swear she was a stock holder for Merck or Lily.

Lupron helped my daughter for as long as she needed it. The dose was appropriate, the protocol closely monitored by regular testing... and the intended result was achieved. It's NOT a cure for autism. It's a therapy that addresses one major piece of the biological disease process that affects the immune system, gut and brain. I am grateful to Dr. Geier and his son, David for their hard work and diligence for our kids.

KWombles writes (in response to Kim's opening note): "Is your argument that if regular docs do it and don't know the effects, then no bigger if the Greiers do it?"

I think the big difference is this: The Geiers have studied it significantly and have some very compelling evidence of its potential to help these kids. Most mainstream Peds write scripts right and left with no personal investment in even reading the studies done on these drugs---much less doing the research themselves. There's a big difference there...

Great piece, Dan.

I especially like your parallel to Donald T., the gold salts treatments and autism treatments today.

Do you think the Trib or even better , a "scientific" magazine like , oh, maybe Discover, would check out why those gold salts helped Donald so much? Do you think one of their many research techies would look back to see that gold salts were used for arthritis but also have these interesting characteristics as they relate to autism in Donald T. and autism today? -

Autoimmun Rev. 2002 Aug;1(4):205-12.

Th2-type immunopathological manifestations induced by mercury chloride or gold salts in the rat: signal transduction pathways, cellular mechanisms and genetic control.
Fournié GJ, Saoudi A, Druet P, Pelletier L.

INSERM U 563, Centre de Physiopathologie Toulouse-Purpan, Hôpital Purpan, IFR30, CHU Purpan, Place du Dr Baylac, 31059 Toulouse, France.

Heavy metals induce various immunopathological disorders including an increase in serum IgE concentration in predisposed humans. The effects of HgCl2 or gold salts differ depending on the strain of rats tested: they induce Th2-mediated immunopathology in Brown-Norway (BN) rats while HgCl2 triggers an immunosuppression in Lewis (LEW) rats. The disease is due to the emergence of self-MHC class II reactive Th2 cells in BN rats. Autoreactive T cells are also found in HgCl2-injected LEW rats but they produce TGFbeta and IL-10 and have immunoregulatory properties. Hg or Au act on the early steps of T cell activation resulting in IL-4 and IFNgamma gene expression with preferential IL-4 expression in BN rats. Analyzing the effects of HgCl2 on T cells led us to identify a new signaling pathway implicated in IL-4 production. An important feature of this model concerns genetics. Indeed Th2-dependent autoimmunity induced by metals occurs only in BN rats that are genetically committed to develop Th2 responses. Cellular features at play are discussed as well as the identification of loci that control both the Th1/Th2 balance and susceptibility to autoimmunity.

Int Immunol. 2001 Mar;13(3):297-304.
IL-4 gene expression up-regulated by mercury in rat mast cells: a role of oxidant stress in IL-4 transcription.
Wu Z, Turner DR, Oliveira DB.

Division of Renal Medicine, St George's Hospital Medical School, Cranmer Terrace, London SW17 0RE, UK.

In the Brown Norway (BN) rat, chemical compounds [mercuric chloride (HgCl2), D-penicillamine or gold salts] induce a T(h)2-dominated autoimmune syndrome with tissue injury in the form of a vasculitis and arthritis. An early phase of vasculitis in the model occurs within 24 h of an injection of HgCl2, is alphabeta T cell independent and involves the mast cell. In addition, HgCl2 induces IL-4 mRNA in mast cells from BN rats. Our recent work has demonstrated that the balance of oxidative/antioxidative influences plays an important role in the modulation of mast cell function (degranulation) in chemically induced autoimmunity. The aim of this study was to determine, in mast cells, whether oxidative status influences IL-4 transcription and translation, which is required for the development of a T(h)2 response. Exposure of the mast cell line RBL-2H3 to HgCl2 enhanced both IL-4 mRNA and its promoter activity. Oxidative stress by hydrogen peroxide mimicked the effects of HgCl2 in enhancing IL-4 promoter activity. The enhancement of IL-4 gene expression by HgCl2 was significantly reduced by antioxidants (both sulphydryl and non-sulphydryl containing). The same pattern of regulation was also observed on IL-4 protein expression in the mast cells. These data suggest a novel mechanism of IL-4 transcriptional up-regulation by oxidative stress. Our results provide evidence to support our hypothesis that alterations in intracellular reactive oxygen species production modulate both IL-4 gene expression and mast cell function.

J Rheumatol Suppl. 1979;5:120-9.
Action of gold salts on the inflammatory response and inflammatory cell function.
Vernon-Roberts B.

Information relating to the effect and mechanism of action of gold salts on acute and chronic inflammatory processes has been reviewed. Gold salts are effective in suppressing various aspects of the acute inflammatory process although large gaps exist in the knowledge of the mechanisms involved. Available evidence indicates that gold salts affect many biochemical pathways and that interaction with enzymes plays a major role in their pharmacology. Because they are more difficult to investigate, the action of gold salts on various important aspects of chronic inflammation have not yet received much attention.

Very well written Mr. Olmstead. I was a little enraged at the irresponsible reporting done by the Tribune. It seems like they are more interested in discrediting any alternative treatments of autism (and I'm sure these reporters have never read the benefits of many of these treatments or actually talked to a parent of a child with autism) than to find out what is causing it. As a former journalism major, my understanding is that a journalists job is to be a watchdog and do fair and balanced reporting. I don't know the reasons why they have chosen to paint these doctors and experts at the Autism One conference as trying to manipulate us as parents to use "junk science" on our kids. That is an insult to me as a subscriber to the Tribune that I would just blindly follow something that I know nothing about and hasn't been proven.

I'm telling them that we're at the point in society that articles like this won't be taken at face value. In the autism community and beyond, there is undeniable evidence that autism is linked with vaccines. This is not only accepted by people in the autism community, but also people that aren't. Do they think an article like this is going to calm our fears?

I call upon the Chicago Tribune to revive their integrity as journalists to read the information by many credible doctors that autism is linked with vaccines. It is their responsibility to report completely on the autism epidemic. This includes talking to doctors in the DAN community that have helped our children. It also includes talking to parents who have seen our children trnnsform with changes in diet and supplementation.

Be responsible, editors at the Chicago Tribune, and get to work. Anything less than a full investigation would not only be a great disservice to people in the autism community but our society overall.

"I can't wait to read her the part of our book about how the very first case of autism recovered -- according to his family, not to me -- after being treated with an unconventional drug not approved for autism, and how that fact managed to stay buried for 75 years while doctors blamed the parents, their genes and whatever else they could dream up......"

The US spends 15.3% of its GDP on healthcare, far ahead of other European countries such as Germany at 10.9% and France at 10.5%.

Quoting an email I received, "67% of Swiss citizens (!) just voted to include alternative medicine in their government's insurance health plans. They even wrote this demand for coverage into their constitution!"

See here:

http://www.swissinfo.ch/eng/search/Result.html?siteSect=882&ty=st&sid=10716067


Overgeneralization: "Mainstream docs prescribe this drug every day, to children."

Statistics to back up this claim?

Is your argument that if regular docs do it and don't know the effects, then no bigger if the Greiers do it?

The article in the Trib was actually a 2-parter, the second appearing yesterday. I have no opinion on lupron or the Geiers and Eisenstein because I don't know enough about any of them. But, the authors of this article had no problem lumping these guys in with other AoA & Generation Rescue followers making us think they're all wackos. What the authors of these articles don't understand is we all have definitions of what "improved" or "better" means when it comes to our childrens' lives as the direct result of treatments that are not mainstream. Chicago Trib - Come live in my shoes for a weekend and then maybe you'll understand why we constantly search for something that helps.

Mark and David Geier are veterans of media smear tactics. They have the distinction of having been smeared by The New York Times, about 6 years ago. I can still recall my daughters baffled expression. They were first described as a wierd duo who worked in a lab that was something akin to a car garage. Then if you turned to an inner page, there was a photo of them in a terrific, state of the art laboratory. I guess someone made a mistake in including the photo.

fyi my email to the three authors of the trib articles

ttsouderos@tribune.com
smmills@tribune.com
tmjones@tribune.com

I SAY LET'S OVERWHELM THEM WITH EMAIL!!!!

my son who has autism a patient of dr usman

Congratulations, Chicago Tribune! Instead of reporting on the number of medical doctors (a number, by the way, that grows daily) that are using a variety of alternative treatments (some controversial, and most not) to successfully treat the variety of symptoms experienced with ASD (Autism Spectrum Disorder), ADD, ADHD, food allergies and a host of other auto-immune diseases that are overwhelming parents across the nation, you decide instead to focus on one of the most controversial treatments you could find, and spread it all over the first few pages of your newspaper. Way to fuel the hysteria and misinformation! By the way, why is the number of affected boys far greater than girls? Scientists have found that testosterone does play a role.

You explain any and all long-lasting improvements, some of them clinically-proven and all of them patient-proven, by saying they are “normal development leaps to whatever treatment is being tried at the time.” Clearly NONE of these doctors treat patients with autism. That is just downright condescending and offensive, especially to those people like Dr Jerry Kartzinel who has used alternative treatments to successfully treat his own son’s autism. Or Dr Anju Usman, who has 1800+ patients in her practice, so clearly she’s getting results and the word has gotten around. And hundreds of others. The true dubious junk science that you should be reporting on is the poorly-done and biased pharmaceutical-industry-sponsored vaccine “studies” that the media consistently misreports as proof that all vaccines are safe. Do your homework, lazy media people! In fact, only a very few vaccines have ever been studied. http://www.fourteenstudies.org/studies.html

Do you guys also work for Fox news? So much for Fair and Balanced……… Clearly you have an agenda and you are feeding the divisiveness and misinformation instead of being helpful. Too bad we can’t see what recently happened in Maine happen to all throughout the country.
http://www.ageofautism.com/2009/05/the-maine-event-cdc-and-dhha-hosts-groundbreaking-autism-conference-for-doctors.html
representative quotes:
- Dr. Mills, coming to tears, joined her at the podium and told the crowd that she had just experienced a monumental paradigm shift, as the audience responded with a standing ovation.

- (this) has done more to melt my cynicism than anything has done in a long time. Looking out on the crowd I had hope for the first time in ages that we parents might not be alone in our fight forever, and that I may get to stop having to be a doctor and a lawyer and journalist and an activist and the town crier and just get to be a mom to my boys.

Dr. Eisenstein's Homefirst has a booth at A1. I asked his son how he's doing after the poorly written article in the trib - he's fine. Water on a duck's back. The one lawsuit mentioned in the piece was from over a decade ago. They really had to dig deep to find something on them.

Dr. Rosi (cited in the article) attended one of my home births - he's a wonderful, compassionate man. Happy to be called away from a downtown event to come to my home and welcome my Nate into the world. He blessed me and gave me a kiss - not even my own dad did that!

I reminded Dr. E's son they're doing good work, God's work, and he has a bunch of us on their side. He smiled and was thankful.

Oh, I got to shake Kim's hand today. I told her I was a fan and she quickly redirected me to one of the booths selling a product ("Look over there!") and ran away. I guess my looking like Kathy Bates freaks famous people out. :(

Thank you Dan. We're there in spirit with you! It's always been amazing to me how quick doctors who are helping our children are critized, marginalized and shot down as "taking advantage" of parents. Yet look at those doing the criticizing. What are they doing to help our children? Nothing.

Rather than deal in facts and true methods of scientific inquiry, it is so much easier to destroy the messenger. Marginalized and pitied prior to an event, presenters can be easily panned after the fact. It's running interference so if anything valuable comes out, it can also be marginalized.
Cynthia Cournoyer
http://www.whataboutimmunizations.com/

On the plus side, aren't they in Chapter 11 bankruptcy right now, along with the LA Times? Tribune Co. owner Sam Zell's big holding corporation, Equity Group Investments LLC, according to Forbes has $1633.4 Billion invested in the health care sector. That's a lot of simoleans, as Bugs Bunny used to say! His son, Matthew Zell, is the Managing Director of Equity Investments. Matthew is also on the board of directors of a company called Rules-Based Medicine, Inc., which provides pre-and post-clinical support services to researchers testing drugs and other products (biomarker testing, etc.). Guessing their primary customers are Pharma but can't be sure.

Maybe since you are in Chicago you could look them up and ask them to make amends for their crap news article by doing a little biomarker test development for autism.

If Lupon decreases testerone, what good would it do in stopping a female child's period?????????

Thanks, Dan.

There was a recent update to a story in Salon.com by a mom-- forget her name-- whose autistic son had gone stark raving on psych drugs some years ago. He apparently never truly recovered from his time on antipsychotics, though currently this mother has become mesmerized by the mainstreamers again after having had a period of healthy disenchantment. And the mainstream docs were saying that her son's autism was simply developing in a violent, psychotic direction-- just cuz (not anything to do with the drugs of course, shhhhh). Odd that the young man had gotten through most of his teens-- prior to the drugs-- without being violent or psychotic, but whatever. So this mom writes part II to the story-- autistic son is violently insane and sexually ferral. And the first thing some "savior" mainstream psychiatric specialist in autism recommends-- aside from another cocktail of antipsychotics, etc.-- is...Lupron.

This writer for the Trib didn't do their homework and didn't realize the mainstream industry toes they could be stomping on by exclusively framing altmed types for using a medication approach that has become a casual mainstay of the mainstream. The mainstream may be at fault in some ways for not doing their typical, expected, PR "precede" on their plans to use and promote the treatment as a matter of course, all so that papers would know to give it a positive "pharma suck up" spin. And tsk, now Lupron's been smeared. It will be funny to see if the paper tries to mend its position once the mainstream doctors and pharmaceutical types write in to defend the practice (while still supporting the attack on Autism One).

My impression was that Lupron was just one of those things in the mainstream arsenal that some in the altmed realm merely hadn't dismissed.

Dan, last year AoA published a post from Kent Heckenlively entitled "MERCURY, TESTOSTERONE AND AUTISM - A REALLY BIG IDEA!" In the comments, you said that you had gone to the Geiers' house and witnessed a child receive a Lupron injection and improve immediately. You "just had to put this on the record," you said.

I'm happy to see that AoA has progressed to taking a more critical look at this experimental autism "treatment."

Isn't this Tribune article a bit like saying that the Mall of America is Sunglasses Hut?

I would love to be at the conference, we got family up there. Well maybe when I can afford an intercontinental teleporter we can make a long trip like that. Beam me up Danny, by keeping us posted!

I think this tribune writer should be invited to the autism one conference, Dan. It's easy to criticize something you know absolutely nothing about from your little cubicle. Get a few quote that support "what you think you know" from Singer and Baron-Cohen. It's a no-brainer when you think you understand something that you really have no clue about. It could be an eye-opening experience for them.

I should know. I've been there. I was a vocal pro-vaccine mom. It didn't help that the only person I knew who connected vaccine and autism was an uneducated and overbearing mom I knew. The only difference between me and this reporter is I didn't have a bully pulpit to reach thousands of people.

Then my own son crashed. Once I read the science and research for myself, I realized that I had been fooled into believing vaccine were 100% safe and effective by media, who didn't have a clue what they were talking about, and by my doctor, who was regurgitating what the Merck rep had told him on their last visit.

I love Dr. Geier. He has been very outspoken about his belief that thimerosal causes autism and now he is being targeted like Dr. Wakefield. The average pediatrician is too wimpy to go up againt pharma. I have great respect for a doctor (who is not personally affected by autism) and still takes on the autism issue. These brave doctors will go down in history while the average poisoning pediaquack will fade into oblivion where they belong.

Dan,

Didn't you use to work for them?

http://www.upi.com/Health_News/2009/05/22/Conference-pushes-untested-autism-drug/UPI-74091242969060/

Conference pushes untested autism drug

Published: May 22, 2009 at 1:11 AM

CHICAGO, May 22 (UPI) -- A conference on autism under way in Chicago features treatments not recognized by most doctors, including a drug sometimes used for chemical castration.

The use of Lupron is based on the theory that autistic children have too much of the male hormone testosterone, the Chicago Tribune reported Thursday. Dr. Mark Geier, who developed the use of Lupron with his son, calls it a "miracle drug."

But most autism experts say Lupron has not been tested as an autism treatment and there is no proof autism is linked to testosterone.

"The idea of using it with vulnerable children with autism, who do not have a life-threatening disease and pose no danger to anyone, without a careful trial to determine the unwanted side effects or indeed any benefits, fills me with horror," Simon Baron-Cohen, director of the Autism Research Center at Cambridge University in England, told the Tribune.

The five-day Autism One conference began Wednesday. The keynote speaker Saturday is Jennie McCarthy, who has gained a popular following for her contention, also disputed, that vaccination causes autism.

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