Tuesday, March 9, 2010

Oil of the Snake

The deliberately-deceptive "quack" doctor is a well-recognized figure both in history and in fiction, particularly western movies and novels. I have a cousin who wrote a book on three such charismatic con men of the 20th century, including one John Brinkley who promoted transplants of goat glands as a cure for infertility or lost virility (and also ran for governor of Kansas!) One slang term for such characters is "snake oil salesmen."

Ah, but nothing is as simple as it seems. Turns out that the term "snake oil" comes from a particular Chinese medication, a product of the Chinese water snake, that is still used for relief from arthritis and joint pain. The jump from traditional Chinese medicine to association with American quackery may have come about when Chinese immigrant laborers on the Transcontinental Railroad shared their joint pain remedy with laborers of European descent. Funny thing is... for the specific joint pain application, the oil of the Chinese water snake might possibly have certain beneficial properties...

The presenters in the first LEND session on alternative therapies were all students in professions who will be working with children with disabilities some day. They were exceedingly careful about keeping their own language respectful, even when they were obviously skeptical and quoted other organizations who used strong language (such as the National Council Against Health Fraud, on record that "chelation therapy of autistic children should be considered child abuse."

The term "snake oil" didn't pop up until the second set of presentations, which had family-member trainees sprinkled among the presenters -- I think that somehow the family members were a trifle less shy about bringing quack-doctor-history and anecdotes into the mix. Somehow the second session carried more history, more of a sense of the ebb and flow of popularity of alternative treatments and how a single treatment may be sold for a variety of ailments over time.

In fact, that's one of the hallmarks of potentially fraudulent, non-evidence-based treatment: a long laundry-list of what it claims to cure. Good for what ails you!

Among the treatments that were discussed in the second session (hyperbaric oxygen therapy [HBOT], auditory integration therapy/training [AIT], hippotherapy, vitamin therapy for Down syndrome), the laundry-list history came up in relation to HBOT.

Hyperbaric oxygen therapy involves breathing oxygen in a pressurized chamber to increase the blood-oxygen level. It's been around since the 17th century, and is an established treatment for decompression sickness, a potentially-fatal condition that can come about when someone goes too quickly from a pressurized situation (like deep-sea diving or working far underground) back to ordinary air-pressure. Over the years there have been various efforts to link HBOT to other ailments as well. One of the more flamboyant historical HBOT figures was a Dr. Cunningham, who in 1921 built a hyperbaric chamber 20 meters in diameter, in which patients could actually reside. He claimed that anaerobic bacteria were responsible for a whole range of ills from cancer to high blood pressure, and that an oxygen-rich hyperbaric environment would discourage/treat the bacteria. (This was the point in the presentation at which the term "snake oil" was used -- the idea of treating infections caused by anaerobic bacteria in this way may have merit, but that's different from cancer!) Dr. Cunningham was eventually denounced and his massive steel chamber was demolished for scrap metal.

More recently, HBOT has received publicity as an alternative treatment for cerebral palsy and autism. Neither of these applications of HBOT has yet been the subject of a Cochrane Review (a major go-to source for evidence-based medicine). There have been two studies of HBOT for autism led by Dan Rossignol, most recently a double-blind, multi-center trial in 2009 that found significant improvements. The presenters did point out, however, that the improvements were based on parental observation (and as I mentioned about the Elder 2006 study on the GFCF diet, parental reports can be much more enthusiastic than researcher observations.) HBOT is a relatively expensive treatment, $300-400 per session -- and the protocol in the Rossignol study involved 40 sessions.

Another therapy where a family member on the presentation team came down a little harder due to personal experience was vitamin therapy for Down syndrome -- I think the three presenters were all students of genetic counselling. The idea is that the manifestations of Down syndrome, from intellectual disability to facial differences, can be ameliorated by treating the syndrome as a metabolic condition. Some of the substances involved include thyroid supplementation, flaxseed oil, and dimethylglycine (DMG), but the list is long and varied. One of the presenters had family experience with a prominent practitioner of this approach, a Dr. Forrest Warner, known for his travelling clinics that set up in a given city for a day. Parents lined up with their children for a short expensive evaluation in which expensive supplements were recommended, to be taken indefinitely in the absence of any follow-up. Granted that this is a single anecdote, but it obviously had an impact on how the presenter viewed the therapy.

The research on vitamin therapy for Down syndrome is mostly negative, to the point that the National Down Syndrome Society has stated:
The administration of the vitamin related therapies -- e.g. the vitamin/mineral/amino acid/hormone/enzyme combination, has not been shown to be of benefit in a controlled trial, that the rationale advanced for these therapies is unproven, and that the previous use of these therapies has not produced any scientifically validated significant results. Moreover, the long term effects of chronic administration of many of the ingredients in these preparations are unknown. Despite the large sums of money which concerned parents have spent for such treatments in the hope that the conditions of their child with Down syndrome would be bettered, there is no evidence that any such benefit has been produced.

Just at the end of the presentation, someone (presenter or faculty member in the audience, I can't remember?) mentioned that flaxseed oil and DMG have some proponents when it comes to autism as well. [Good for what ails you?]

Next up, auditory integration therapy (AIT), presented by audiology students. Given the alternative status of AIT, I suppose it's not surprising that this was not something the presenters had been exposed to in their studies to this point. In fact, they were having a hard time trying to understand and explain what exactly was involved. The claims for the therapy for autism spectrum disorders involve increased attention span and eye contact, and improvement in abnormal sound sensitivity. The therapy itself involves listening via headphones to specially modulated music 2x/day for 10 days (I believe this was the Berard method.) Cost can be in the neighborhood of $2000.

There's been a bit more research regarding AIT for autism; a 2004 Cochrane Review found 6 studies worth addressing, which ended up measuring a variety of outcomes and reported mixed results. One potential risk may be that the sounds could be damagingly loud, but I don't have a citation for that. The group concluded by citing a technical report from the American Speech-language Hearing Association (ASHA) stating that AIT has not met scientific standards for efficacy and safety and should be considered experimental.

The only presentation I haven't discussed yet was the one on hippotherapy, which (contrary to the word's appearance) does not involve hippopotamuses! "Hippo" is the Latin root word for "horse," and hippotherapy is a strategy that uses horseback riding as part of an integrated intervention program in cases of neuromusculoskeletal dysfunction, a program that may include physical therapy, occupational therapy, or speech-language. The movement of the horse is said to mimic the human pelvic movement of walking. Hippotherapy has a full-blown association (founded in 1992) and a certification board (since 1999) and the presenters' handout listed a whole slew of practitioners in our state. Risks are not extensive -- allergies, and the fact that a horse is a large and potentially unpredictable animal -- and proponents claim gains in patient self-confidence along with the therapeutic gains.

However, hippotherapy is one of the explicit exclusions in our state's recent autism insurance mandate -- along with HBOT, AIT, chelation and special diets, come to think of it. Barbara at TherExtras had some reflections on hippotherapy (to some extent in conversation with me!) a month ago, exploring the ramifications of pushing to get hippotherapy recognized as medical treatment. One of the LEND faculty brought up a related note when she compared the self-confidence gains from hippotherapy to what might result from participation in organized sporting activities.

Thus endeth the roundup of our LEND explorations into alternative therapies. Just to reiterate, every one of these alternative therapies has its enthusiastic proponents and its skeptics. Some have been quite thoroughly discredited, others are squarely in the "need more research" category and that research could tip either way.

One piece of advice that I'd offer for folks gathering information on an alternative therapy. I would suggest searching the following sources for a pull-no-punches skeptical take:

Even if they speak of any given therapy in harsh or off-putting terms, it's a useful counterweight to potentially overly-enthusiastic claims. And not all of the therapies listed in these past few posts are evaluated there. (For example, hippotherapy is not mentioned on either site.)

One final note. Back when Barbara (TherExtras) and I first met, we had a conversation about craniosacral therapy. She included in her post the following Bible verse, which had been in the readings at her church that week:
Why spend your money for what is not bread; your wages for what fails to satisfy? -- Isaiah 55:2

That verse was among the scriptures read at my church this past week.

No coincidences!

7 comments:

Swede said...

This seems like a fabulous exercise for your program (which fascinates me utterly!) - and as friends plunge into various therapies, I really appreciate that you've shared the info further with us.

rhemashope said...

I first "met" you when you were doing craniosacral therapy with Joy. I appreciated your honest, thoughtful, down-to-earth perspective then and do now. Thanks for the synopsis.

TheRextras said...

Like Swede I am a BIG fan of your reports from the LEND program. Your blog creates a capable extension of important information.

Information like the oily treatment of HBOT promoted by reptilian quasi-medical professionals. I heard Dr. Rossigol (a family practice physician) speak live (online) at the World Congress for Disability (recently). He was a convincing speaker, especially in his role as a parent of two boys with autism. However, in the panel discussion that followed, including statements from audience members, it is clear to me that the purported positive effects of HBOT are placebo.

I emphasize what JM said - in the only well-designed study on this subject, the positive effects were entirely subjective from parents.

Physiologically, HBOT for children with autism makes no sense. It is like saying soup tastes better warm, but applying insulation to the pot but no heat. The claims are scientifically unsound.

Among the audience speakers at the WCD the family members were all emotional, recounting the devastation of their child's or grandchild's condition. The desperation for cure/fix was palpable. Return to JM's posts on hope and jess's comment - professionals canNOT responsibly give hope that they do not have.

BRatK

Katie said...

Thanks for the AIT shoutout! I also read the abstract for the document you posted about it. I'm thankful that my profession doesn't promote the use of this therapy! Your blog is amazing! Now I see why you take copious amounts of notes during Friday LEND lectures :)

Your fellow audiology LEND trainee,
Katie

Elizabeth Channel said...

I found the AIT (Audio Integration Therapy) information the most fascinating because that is used so much around here by pediatric therapy centers. I wonder if it is used more in the south than the north?

Andrea said...

I often think of Jesus healing blindness with mud--which would have been poo-poo'd by the establishment. I remain open (if slightly cynical) to most treatments. Cranial osteopathy has been enormously beneficial to our entire family. I think of it as laying on of hands which was so widely done in other cultures and Bible times. Body Talk is our latest endeavor....fascinating what we learn along the way, isn't it?

TheRextras said...

Readers - oh, you, JM, too, might enjoy this one:

http://mommadata.blogspot.com/2010/03/first-annual-best-parenting-expert.html