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Dr. Rust testifies in the Autism Omnibus Hearing

22 May

Today Dr. Robert Rust testified in the thimerosal-only causation portion of the Autism Omnibus Proceedings. Dr. Rust also testified in the Hazlehurst case regarding the combined MMR-thimerosal causation hypothesis. You can find Dr. Rust’s testimony in the Hazlehurst case in the Day 3 transcript from that case. Today is “Day 8” of the thimerosal portion so you can look for the “Day 8” mp3 files on the US Federal Court website.

Dr. Rust has some impressive credentials. He is the Thomas E. Worrall, Jr. Professor in Epileptology and Neurology, and Professor of Pediatrics at the University of Virginia. He had a residency in Pediatrics at Yale University and in Child Neurology and neurochemistry at Washington University in St. Louis. He also had a fellowship in Neurochemistry, Neonatal Neurology, and Brain Metabolism, at Washington University. A University of Virginia website says that he has clinical interests in epilepsy, headache, neonatal neurology and degenerative disorders.

Dr. Rust had a lot of material to cover in his testimony. It seemed to me that he was trying to cover a semester or two’s worth of neurodevelopment and neurophysiology in a couple of hours, trying to keep it simple enough for the needs of the court, and yet detailed enough to make some critical points about how neurons, microglia and astroglia work and discussing what is known about regression in autism and what might cause it. He also discussed some of the particulars of the medical records of William Mead and Jordan King. Their main DAN! doctor is Dr. John Green III of Oregon. Dr. Green is a favorite DAN! doctor as was made clear in the testimony by Jordan King’s mother. She said something like seeing Dr. Green was “invitation only.” No doubt. Many of the lab tests discussed were ordered by Dr. Green, and many of the therapies the boys had were ordered or administered by Dr. Green, including one very traumatic IVIG infusion Mr. Mead described his son enduring.

Bogus lab tests are a huge problem in autism “biomedical” therapies. Not that all of the lab tests used by all DAN! (Defeat Autism Now!) doctors are bogus, but it sure seems like many of those that parents share with the public are highly questionable lab tests such as hair analysis for heavy metals, and urine heavy metals lab tests from one particular lab that was mentioned several times in the testimony. For instance, an image of one of these very lab tests was used as an illustration at the top of a blog entry on a certain autism hysteria promoting group blog recently.

When Dr. Mumper testified she commented about how one of the boy’s lab results had this extremely high level of tin while the other metals were in a normal range. (Keeping in mind that the “normal ranges” on these tests are nearly arbitrary and don’t have much to do with real world levels of anything in healthy or sick autistic children.) Dr Mumper acted as if this was not that weird and she said a couple of times, at least, that when they see such a high level of tin in a child she will ask the parents if the kids are eating a lot of toothpaste or drinking a lot of juice from “juice boxes”. She didn’t offer a specific therapy for “tin intoxication”, whereas if mercury had been that high they no doubt would have all been sobbing over the horror of it all. At any rate, Dr. Rust made an interesting point that high levels of tin are almost unheard of and to get a high enough level of tin to affect health, it basically takes a decade or two of working with tin every day where the tin is exposed to heat and is creating tin vapor and a worker is inhaling it. This didn’t reflect well on the quality of that lab’s tests, or on Dr. Mumper’s ability to think critically about such things as lab test results, in my opinion.

The following is a very rough transcript of one portion of Dr. Rust’s testimony that I found very interesting. I don’t know if the Dept. of Justice lawyer was Ms. Renzi, but I think it was, so I’m using her name for the time being. [Edit: The DoJ lawyer was Ms. Esposito, not Ms. Renzi. This portion of the audio transcript is found in the 2nd file on day 9 the following part is found around a 30 minutes into that recording). The words I added in parentheses are not direct quotes but gives the meaning of what was said. I can’t type that fast and so as I was taking notes I didn’t transcribe portions of it word for word, but got the gist.

Ms. Renz Esposito: I’d like to discuss some of the treatments given to these children.

Esposito:: (Can you tell us if) IVIG therapy (is helpful in autism?)

Rust: t’s been tried along with it’s cousin corticosteroids, but no improvement has been seen bahaviorally, functionally or with EEG.

Esposito:: (Can you tell us about the) supplements (given to William Mead and Jordan King?)

Rust: We don’t hear about most of them probably, to the extent that there is data (these supplements don’t help), to the extent that parents tell us what they are using.

Esposito:: Secretin?

Rust: Secretin was found not to be effective

Esposito:: Chelation?

Rust: I’ve seen no evidence that chelation is helpful in this setting…. (recalls when kids with lead poisoning were chelated in a clinic/hospital where he work) considerable pain it caused. Children would be screaming on the way into chelation.

Esposito: Saunas?

Rust: Saunas can help with headaches and stress and tensions but in autism there is nothing to sweat out except some of the notions about treatments that have been offered to the child.

Esposito:: Dr. Green’s therapies…. (for William Mead or Jordan King) included an implantation enema, ideally with a colonic delivery system, using maternal fetal [fecal?] supernate…

Rust: So far as I know that the approach has been around since Roman times, …. used to be a regular feature of childbirth.

Esposito:: Feeding a child fermented vegetables?

Rust: …(doesn’t change autism)…

Esposito: Earthworm eggs?

Rust: No known benefit that I’m aware of. (The discussion changed to something about herbal treatments.) I had a patient with seizures, the parents gave a Chinese herbal (medicine). The Chinese botanical was interesting. We were astonished (the child had a striking improvement in seizures) , we sent a sample of it to a lab and found out it was phenobarbital.

Esposito: Charcoal?

Rust: (No reason to think it would help)

Esposito: Oral baygam (oral immune globulin)?

Rust: I have no information about that.

Esposito: Valtrex?

Rust: I don’t know any reason to think it would work. (a little later he added that Valtrex is a drug used to treat herpes infections.)

Esposito:: Are you familiar with Eskimo oil?

Rust: (slightly amused) No I haven’t heard of that.

Esposito: Actos?

Rust: (I don’t know of any benefit for autism.)

Esposito: If there were a report of improvement would you extrapolate that there was a cause of autism.

Esposito: Is it standard practice to prescribe something to patients and then sell it to them?

Russ: (A doctor’s obligation to the patient) is to listen without repeating their problems… (not to sell the patient treatments) … to keep an office of Amway products. It trades on the prestige we have and the reliance that the patients have on us. It is one of the most grave violations of our code of ethics.

Esposito: Do you prescribe these things?

Russ: No …

Esposito: Do other neurologists prescribe these things?

Russ: No …

The “implantation enema” as I understood it, that was recommended by Dr. Green for one of the boys
was a “fecal enema“.

Specifically, again as I understood it, what was recommended was to take some of the boy’s mother’s feces and mix it with water and infuse that into the boy’s colon or something. From Dr. Rust’s response I got the feeling that he didn’t understand that this particular enema wasn’t just a water enema, but that the idea was to put the germs from the mom’s feces into the boy’s intestines.

Now I thought Dr. Rashid Buttar’s urine injections were bizarre. This one ranks right up there, though, for sheer gross-out factor. And how about those “earthworm eggs”? It’s possible that what Ms. Renzi asked about was “whipworm eggs.” Perhaps I heard what she said wrong, but it sounded like “earthworm eggs” [edit: She said “earthworm eggs”]. Taking pig whipworm eggs orally is an alternative therapy for Crohn’s disease, apparently. I remember reading somewhere that a mom asked Dr. Andrew Wakefield what he thought of giving autistic kids worms to treat their gut problems. He was quoted by that mom as saying that he didn’t think it would work for autistic children’s guts.

I encourage everyone to listen to the recordings of the autism omnibus and to read the transcripts, they are very educational. One can learn a lot about the ‘therapies’ being offered to parents of autistic children as well as some of the best of the best of the science that is known about autism. I don’t agree with everything the experts are saying, such as when Dr. Rust called autism a “disease”, but it’s still very interesting listening if you are at all interested in autism.

Actos – The New Fad

14 Sep

In the world of autism quackery, I’m of the growing opinion that the ‘doctors’ who play about with the drugs they experiment with on autistic kids sometimes sit around in a big club somewhere one-upping each other:

Chelation? Pfft – thats nothing. I give all my kids IV Chelation…..Oh yeah, well, I give all _my_ kids IV Chelation of garlic and vinegar….[an impressed rumble goes around the table]….thats nothing – I give my kids HBOT…..Really? HBOT? Well, I give my macaques, I mean, kids _Lupron_….

And there it rested for awhile. That is until a new kid on the block came long. Actos. What the hell is Actos? Its a drug used to treat Type 2 Diabetes. Why’s it being used to experiment on autistic kids? Well, the DAN! party line is that autism is or causes or whatever neuroinflammation. Actos reduces inflammation.

In a Newsday story DAN! doctor, Marvin Boris tells how he uses Actos all the time and in fact has co-authored a paper on its use:

Discussion and evaluation: In a small cohort of autistic children, daily treatment with 30 or 60 mg p.o. pioglitazone for 3–4 months induced apparent clinical improvement without adverse events. There were no adverse effects noted and behavioral measurements revealed a significant decrease in 4 out of 5 subcategories (irritability, lethargy, stereotypy, and hyperactivity). Improved behaviors were inversely correlated with patient age, indicating stronger effects on the younger patients.

Conclusion: Pioglitazone should be considered for further testing of therapeutic potential in autistic patients.

Happy days right?

Well of _course_ not. Would I be blogging about it if it was?

First problem I thought of was the discrepancy between sample size (25) and conclusion. At _best_ I would think of this as a pilot study.

The second issue was the utter lack of clarification regarding Actos and what exact risks were spelled out to the patients or their guardians. Actos is pretty heavy stuff.

Last week Actos received a “black box warning” from the U.S. Food and Drug Administration, the agency’s strongest level of caution. Actos, and a similar diabetes drug, Avandia, can increase the risk of heart failure, the FDA warned.

A black box warning means that the drug in question has a large black box drawn the text of the warning just to make it perfectly clear what the issues are. The warning confirms the Newsday story:

ACTOS is not for everyone. Certain patients with heart failure should not start taking ACTOS. ACTOS can cause or worsen congestive heart failure.

And whilst the study _claims_ Actos has a good safety record, what it neglects to mention is that:

Its safety in….people under 18 is not established.

So here we have a situation wherein a heavy duty drug is being used in a very off-label way, on a population it has no safety record for and which carries a black box FDA warning regarding its side effects.

Now, maybe its just me but two things strike me almost immediately about all this.

Firstly, call me silly and old fashioned, but I would much rather have an autistic kid then take a chance on having a dead kid. But maybe thats just me.

Secondly, all these parents who scream blue murder about the evil Big Pharma and complain bitterly about the safety records of thiomersal are apparently more than happy to fall into the loving embrace of this medication, made by Big Pharma and with no safety record at all.

My guess? Dr Boris wins at the DAN! bragging contest this year.