Thursday, June 16, 2005

There oughtta be a law.

I was once given the opportunity to spend a day in the company of a group of hemispherectomy patients. All of these patients were kids, and all of them had the procedure as a last-resort treatment for intractable epilepsy and other seizure disorders. It's easy to describe my experience: it was just like spending the day with any other group of kids. It's important to stress that none of these kids were disabled in any obvious way. Some of them had some lateralized weakness and some of the left-hemisphere patients had mild to moderate aphasia. The older the child was at the time of their surgery the more noticeable were the effects of the surgery. The littlest kids were completely normal. What a triumph of modern medicine this group represented! And what a testament to the amazing plasticity of the human brain!

I'm a huge fan of modern medicine, and, like any groupie, I hang around holding my breath in anticipation of what those wonderful M.D./Ph.D.s are going to do next. So it was with dismay and disgust that I listened to one of my colleagues a few weeks ago, when he came to me for help with his stepdaughter.

His stepdaughter, age 18, suffers from intractable seizures. Her neurologist planned a standard two-stage procedure: first, invasive monitoring of the seizure focus via surgical implantation of electrodes, and second, surgical resection of the focus. My colleague and his wife were strongly in favor of this approach, believing it to be his stepdaughter's best hope for improvement.

Enter his wife's ex-husband, who practices a particularly kooky and distasteful flavor of Christianity. This particular flavor of Christianity is opposed to surgery of any kind, even in life-threatening circumstances. (For whoever would save his life will lose it; and whoever loses his life for my sake and the gospel's will save it. Mark 8:35.) Mr. Kooky convinced his daughter that the time had come for an alternative approach.

That approach began with a meridian stress assessment, wherein a bogus electrodiagnostic device is placed on the patient's "meridians" to detect "stress" in different organs of the body. Mr. Kooky found a "licensed" practitioner in our state, someone who, strangely enough, refused to see patients in his office but preferred to see them in his home. This "medical professional" diagnosed some interesting problems in my colleague's stepdaughter that all her physicians somehow overlooked. Apparently her seizures were being caused by stress in her gall bladder, and also in her cranial bones. Her cranial bones needed "adjustment," and he prescribed massive daily doses of GABA (which is a factor in epilepsy) and a vitamin supplement STRSPLX, which seems to contain mostly large quantities of B-vitamins, according to the closest matches in the Natural Medicines Comprehensive Database.

My colleague needed help. He had already called our state's attorney general and his local law enforcement agency, and had been told that unless they received a complaint from the victim patient or the patient had been injured there was nothing they could do. He and his wife decided that their best ally was going to be their daughter herself, who, at age 18, was old enough to listen to reason. So I pointed him to the Quackwatch website, and downloaded everything I could find to combat the utter nonsense that she was being fed by her father and his quack.

This story has a happy ending. Thanks in large part to Quackwatch, the young lady took charge of her own medical decisions. She was admitted to the hospital last week and the electrodes were implanted successfully. Her resection will take place shortly, and she has every reason to expect her condition to improve as a result.

The sad epilogue, of course, is the charlatan with a voltmeter who still sees patients in his livingroom. I wish there were a hell, so that people like him could roast in it.

4 comments:

iBeth said...

Hear, hear. . As someone raised as a Christian Scientist, permanently disabled as a result of zero medical care, I have heard too many of these stories. And too many of our states endorse such harmful quackery for children. Thank heaven for quackwatch. Another good website is http://www.childrenshealthcare.org/

MplsJu said...

What's especially sad is the medical schools that embrace teaching these "alternative" methods as if they have some sort of scientific basis. This meridian-based therapy was first described to me by a friend in med school, who had just learned this technique earlier this year. Fortunately, he recognized it as b.s., but some of his classmates were more easily convinced.

Anonymous said...

Glad this story had a happy ending. When I was 13, a good friend of mine could have died from a ruptured appendix -- thank god, one of her parents overruled the other and insisted that Christian Scientist or no, their daughter needed care NOW.

You should consider submitting it for next week's Grand Rounds (not sure who's hosting it). If nothing else, Orac would probably be interested in reading this one -- quackery is one of his themes.

Anonymous said...

Hmmm...not sure why that link came up as it did. Orac's site is http://oracknows.blogspot.com/

A