Desperation Drives Parents into Woo

How, if you're involved in the online autism community, can you miss the Tribune's reporting on risky alternative autism treatments? Aoa is all a buzz over it. Hate it! Orac's on top of it. LBRB is on it. Ken Reibel is on top of it, both at his site and here. I said a few short things relating to AoA's coverage of it, and Liz is keeping track of it at her site. So, if you're an anti-vaxxer, you're aghast. If you're a rationalist (gonna see how many different labels I can make up), you're all over this and thrilled to see mainstream media smack down the woo and the charlatans. It's poetry. It is.

Heckenlively is not happy about this workup. At all. Ken covers it nicely. He even directed me to a passage in today's article, "Autism treatment: Science hijacked to support alternative therapies," by Trine Tsouderos and Patricia Callahan that stars Heckenlively.

I wonder if there will be backlash against Heckenlively for this (more than he already gets from the no-woo-for-me-crowd and perhaps some from his own group). Heckenlively has really had some crazy ideas in his posts at AoA, but his latest venture to recover his child may be his worst.

Relevant portions of the article and some thoughts follow:

"Patricia Kane, who calls herself "the queen of fatty acid therapy," initially sounds like a skeptic of alternative autism treatments. She distances herself from the Defeat Autism Now! approach and says hyperbaric oxygen therapy, IVIG and chelation drugs all can be harmful" (Tsouderos and  Callahan).

According to Mercury Exposure, Kane and a Dr. Kinghardt did a lecture on autism. The two of them argue that (at least according to this site) "Autism is made by damage of the immune system by vaccination and heavy metals. Damage by vaccination concerns enzymes of the fatty acid metabolism of the nerves. At those children first of all you have to excrete the heavy metals,. with 6 g Chlorella 4 x per day, and bears garlic."

Tsouderos and Callahan continue:
"One of her fans is Kent Heckenlively, a California science teacher who writes for ageofautism.com, self-described as the "daily web newspaper of the autism epidemic." After spending "a couple of hundred thousands" on treatments, from chelation to stem cell therapy, for his daughter with autism, Heckenlively said Kane appealed to him in part because her protocol includes lab tests run by the prestigious Kennedy Krieger Institute.
"I can trust them, I think," Heckenlively said."
Now this is the part we're really interested in. Heckenlively, as I've deconstructed before, has some pretty damn odd ideas. And now we learn he's onto another one.

Heckenlively admits to spending a shitload of money on quack treatments including chelation and stem cell therapy and now is trying this crap by Kane.
The reporters continue their article:

"Kane, who points to neuroinflammation as a feature of autism, discusses Pardo's study in a chapter she co-wrote on autism treatments for the book "Food and Nutrients in Disease Management."
Kane says many children with autism have a buildup in their brains of a substance called very-long-chain fatty acids. Her "PK Protocol" -- named after her initials -- is aimed at burning them off with a prescription drug, phenylbutyrate, that is normally used to treat extremely rare genetic disorders in which ammonia builds up in the body.

Side effects of phenylbutyrate include vomiting, rectal bleeding, peptic ulcer disease, irregular heartbeat and depression. No clinical trials have evaluated this drug as an autism therapy, and the idea that very-long-chain fatty acids have a role in autism is not proven by science.
Kane is not a medical doctor. When treating children with autism, she says, she works in concert with the child's physician, who supervises treatment."

The reporters continue their scathing indictment of Kane, making it clear to anyone who can actually comprehend their words, that this is beyond the pale of woo and dangerous crap to boot. If you haven't read this article in its entirety, you really need to take the time. The series of articles, in conjuction with last year's, make it abundantly clear that desperate parents with the wherewithall to do so make medical and treatment decisions based not on sound reasoning, based not on science-based medicine, but on that desperation. AoA shows this in comment after comment. The various yahoo groups that these desperate parents post in apparently reveal the depths they are willing to go to to recover their children.

You have to wonder what these family's lives would be like if they weren't convinced that mercury, aluminum, etc. in vaccines did this to them, to their children? If there weren't conmen and charlatans promising them expensive cures that aren't cures at all? If AoA, GenRes, SafeMinds weren't feeding the frenzy?


kathleen said...

What really threw me were the comments afterwards..So many people were yelling that the authors didn't give valid treatments..etc. etc. Bensmyson-remember him from LB/RB a month or so back-there he was talking about his right to use omega 3etc.etc..
Much of the commentary had nothing whatsoever to do with the content of the article-makes you wonder..(although I stopped reading after #36, perhaps it got better?)

AutismNewsBeat said...

"One of her fans is Kent Heckenlively... After spending "a couple of hundred thousands" on treatments, from chelation to stem cell therapy...

Yeah, but it's in pesos.