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:

• Respectful Insolence
  
• Quackwatch

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!

A Pap Smear for Jennifer?

The fall semester is drawing / barrelling to a close, but I have another LEND tidbit to share -- another video from the online social work class in developmental disabilities.

This lecture was presented by Dr. Bill Schwab, a family practitioner and medical faculty member who is highly involved in physician education around disability issues. His lecture, though perhaps a decade or more old, has stood the test of time and has been one of the best segments in the course so far (and the course is almost done!) The lecture topic was issues in health care screening and preventative medicine for adults with disabilities. You can see this hour-long lecture for yourself -- it's free! -- at http://www.iidd.wisc.edu/?q=node/40. (You only need to watch Units 1-3; Unit 4 is a repeat of Unit 3, for some reason.)

The lecture raised issues that I haven't really had to think about yet, with Joy only five years old and all. But the years will fly by...

Dr. Schwab's lecture highlighted the story of "Jennifer," a 30 year old woman with Down Syndrome who became a patient of his. When she started coming to him, she had never had a gynecological exam or pap smear, and was very clear that she did not want any such thing to happen. She was in generally good health and had never been sexually active as far as anyone knew or she was willing/able to report. Dr. Schwab's initial approach, in consultation with Jennifer and the staff who accompanied her, involved a gradual getting-acquainted over a number of appointments, and indeed over the course of two years she became comfortable coming to the office, weighing in, having him listen to her heart and take blood pressure. She was still, however, not willing to do so much as lie down on the exam table.

After two years, she had a staffing change. The new staff who came in with her were of the opinion that here two years had gone by, the pap test still hadn't happened, it was time to get with the program and see that it got done.

Dr. Schwab opened the discussion to the audience: What possible approaches (right or wrong) might a physician take in this situation? The audience started firing off suggestions:

• a more intensive patient-education approach
  
• maybe Jennifer would be more comfortable with a female doctor
  
• continue rapport-building
  
• simply defer the pap test and not push
  
• physical compulsion ("make" her do it)
  
• change in setting
  
• sedation (could be at various levels, up to general anesthesia)
  
• has she been molested in the past? / seek relevant history
  
• create a reward system
  
• modify the screening regimen

They could have gone on.

Dr. Schwab then made a series of very interesting points, some of which you'll just have to see the lecture to pick up... but here are a few of them.

What is the goal for population participation in this screening test among people with intellectual disabilities? Are you trying to get 100% participation... or are you trying to approach the same participation rate as you get with neurotypical (NT) folks? Because there are plenty of NT women who choose not to get that screen. They just never make an appointment for it, or simply decline when asked, and nobody comes to physically compel or sedate them...

Among the values the physician has to weigh are the concepts of personal autonomy versus substituted judgment. With children, NT or otherwise, parents get to make a lot of decisions (no child is going to choose a vaccination or even to go to the doctor at all...) At the other end of life, if dementia or other incompetency comes in to play, there are procedures in place such that people who know the patient and know of their previously-expressed healthcare wishes can make decisions on their behalf. So then you have the question: at what level is substituted judgment appropriate with developmentally-delayed or intellectually disabled adults, who may express preferences counter to prevailing medical advice?

Part of the conversation around any particular screen has to include the effectiveness of early detection (will it help?), the efficacy of the test (how many of the whatever-it-is does it actually catch?), and the question of what the next step would be based on results one way of another. Of course, this conversation applies to NT decision-making too! (Witness the recent change in breast-cancer screening recommendations. Dr. Schwab actually used breast-cancer as an example, and his comments back then are not out of line with the latest recommendations.)

Dr. Schwab made some important observations about going down the road of compelling a patient to be screened against her wishes. What, for example, is the consequence to a woman when she may have been taught protective behaviors all her life around her "private parts" and then she experiences a violation of that in the doctor's office? What message do we send to a person if we promote the idea that people with disabilities have rights and thoughts and opinions that matter -- but not in the doctor's office? What message do we send to the community?

He also said that his experience with partial sedation in such situations has been poor. People who come in under sedation often feel more confused and worried than they already were, feeling even less in control and more abused than they already did.

It's important to be aware that there are modified versions of exams that can be done if the physician is trained and willing. Dr. Schwab described in some detail a modified pelvic exam that involves no stirrups, more reassurance and eye contact (rather than hiding impersonally behind a drape), and no speculum until/unless it's deemed acceptable at the very end of the exam.

The lecture was a little bit cut-and-pasted from its original form, and what's posted right now doesn't actually answer the question of what really did happen with Jennifer (to the extent that she's a real person and not partially hypothetical?) Based on the rest of the content, though, I think I might have a pretty good guess as to what direction the doctor would have been advocating for her.

I think that "Jennifer" and Dr. Schwab's other patients are fortunate people.

Much Has Changed

Think for a moment about what it's like when you move to a new neighborhood.

When you move in, you're the new ones on the block. As far as you know at the moment, everyone else has been there... forever.

Then of course as you get acquainted, you discover that the retired couple over here have been in their house 40 years, this family over there came ten years ago, that house over there has turned over three times in six years, etc. It was fun for us to eventually learn that our home is built on land that used to be an orchard!

I've been feeling a little bit that way about coming into the disabilities-support system. For anyone coming in new, Birth-to-Three is simply there, free appropriate public education is a right not an innovation, etc.

But, as Barbara wrote in the comments on my last post,

We are less than a generation away from closeting children who were recognized early as different to an attitude where the threshold of good parenting is activism.

It was almost as if she'd been in the LEND seminar presentation this past Friday...

We had three speakers. The first, a social worker, has a younger brother with Down Syndrome born in 1959. The second, a nurse, is guardian to a man with multiple disabilities who is (I think) about my age. The third, a family support staffer, has a daughter with Down Syndrome born in 1988.

When the social worker's brother was born, the latest child in a large Chicago family, moms stayed in the hospital for a week or more after the birth. This mom came home as usual a week later, but the baby didn't -- they were keeping him to "help" mom accept the "inevitable" outcome that baby would be institutionalized his whole life. Mom & Dad eventually said NO and brought him home, and later went on to help found the Mongoloid Development Council, which eventually became the National Association for Down Syndrome. Public school education was almost unthinkable; his good fortune was in his parents, and that the recently-elected President Kennedy had some energy and vision around disabilities on account of his sister Rosemary. He eventually got his education at a new Kennedy school in Chicago, though it did mean living away from home.

The nurse entered the life of the man to whom she serves as guardian when he was 22. For much of the first half of his life he lived in an institution, and in foster care. He did not overlap much with P.L. 94-142, the legislation that first mandated public education for people with disabilities (regulations went on the books in 1977, to be implemented by 1980); however, he did catch the wave of the Medicaid waivers that allowed for long-term care supports in the community, such that though he needs round-the-clock care, he lives in an attractive house next to a park, together with three other men who need a similar level of assistance. He has an impressive array of supports, from job coach to transportation to the continuous onsite care.

The family-support staffer gave birth to her daughter in 1988, the middle child of 3, who was diagnosed with Down Syndrome within a day. Within weeks, they had Early Intervention on their doorstep! That early-childhood support was invaluable, and public education was available as well; however, it was assumed that she would go to a separate school. There was a procedure in place, though seldom used, to get a child "mainstreamed" in the regular school: you had to get the teacher to agree, and that's what they set out to do. The woman who agreed to be this girl's kindergarten teacher had such a wonderful experience with her that she moved up to teaching first grade the next year to accompany her student, and then went back for more schooling to become a special educator! The young lady graduated from high school at 21, and has a job at a local brew-pub. However, she still lives at home, though she would surely be capable of living in the community with the right supports; as she transitioned into adult services in 2007, she got a letter informing the family that the waiting list for "residential placement" was ten years. (Gulp.)

Lots of change. Lots of activism, parental and otherwise.

Lots of work yet to do.