Thursday, August 7, 2008

Whose "woo" do you do?

One of my regular reads is Respectful Insolence, a high-profile blog by a surgeon/scientist known pseudonymously as Orac, who pungently dissects all manner of quackery and pseudoscience and "woo", as he calls it. There's plenty of woo out there to dissect, and it makes sense that lots of it is swirling around autism, where the cause is not established and there's no single surefire therapy to recommend and devoted parents will go to the ends of the earth in search of that miracle that might possibly help their child.

For the most part, I'm an evidence-based medicine kind of gal.

But I'm also open to the concept that Western medicine doesn't have all the answers.

I think of my mother, whose journey with kidney cancer lasted an incredible 20+ years. A professor of literature, she was no friend to muddled thinking (to which her composition students could attest!) She pursued her cancer treatments thoughtfully and persistently, and made use of my skills as a librarian to ferret out the latest medical literature. Surgeries comprised most of her treatments. But she also embarked on a trial of high-dose intravenous Vitamin C, a treatment with some serious woo overtones, and credited it with slowing the cancer's growth. She took a carefully-compiled cocktail of nutritional supplements, including pycnogenol and aloe, to the improvement of her fatigue symptoms. And she relied heavily on the prayers of her community.

The treatments we have pursued for Joy's epilepsy have been Western all the way. The intensive relationship-based therapy we have chosen for her primary autism treatment does not have as extensive a publication history as Applied Behavioral Analysis, but the literature is growing and we feel confident that it is a good match for Joy's strengths.

When it comes to Joy's sensory issues, we're on somewhat more controversial ground, though it's a well-accepted concept among occupational therapists. Her constant, sometimes frantic, search for sensory input is highly apparent to us.

But now we're about to go further out on the limb of woo than ever we have gone before. Tomorrow morning Joy has an appointment for craniosacral therapy, occasioned by issues of biting (self and others), teeth-grinding, her intense need to chew, and the intensity with which she tenses up her head and body when she "stims" on pine needles or grass or gravel.

There's a craniosacral therapy practitioner in town whose name has come up again and again. From Joy's pediatrician. From a high-up source in the agency providing the intensive therapy. Once I started mentioning her name to others, I heard nothing but praise and respect. The therapy itself, however, is often branded as woo (Orac took it on this past June). It sure has plenty of the hallmarks of woo. There are extravagant claims for what kinds of disharmonies it can bring back into balance, and the underlying theory does not inspire confidence: certain rhythms in the body, not acknowledged by Western medicine, can be manipulated by gentle hands-on touch and brought back into balance. From the Biodynamic Craniosacral Therapy Association of North America Frequently Asked Questions:
The practitioner listens deeply to the fluctuations of the cerebrospinal fluid within the craniosacral system. The fluctuation of the cerebrospinal fluid creates a variety of tides within the system. As the practitioner — from a place of stillness — listens to these internal tides, the client's system begins to access its own inner resources … perhaps a little like finding keys to previously locked doors.

Oh my. And yet... Joy's pediatrician finds the practitioner we'll be seeing to be a valued diagnostic partner. And we've heard quite a few personal testimonials by now.

By coincidence, or maybe something more than coincidence, I happened upon a fascinating recent post on craniosacral therapy from Barbara, a PhD child-development specialist (& PT & OT) who has experienced the therapy herself. Her post hits very neatly the tone of what I'm feeling going into tomorrow's appointment.

Besides, it's not ridiculously expensive, the touch is gentle and... who knows? It might just help.

Stay tuned. And prayers are welcome too.

4 comments:

Niksmom said...

I have also personally experienced c/s therapy and would try it for Nik if I could find a practitioner in our area that wokrs with children (I've looked).

Sending out good "woo" vibes (*wink*) and lots of positive thoughts.

runatthemouth said...

I'm no big fan of "woo," but I also have learned to have a healthy amount of skepticism with Western medicine. I learned, through my various brain adventures, just how little the medical establishment actually knows about brains.

Lately, I get the feeling that my physical therapist (whom I really like) doesn't really know what works or why things only work some of the time with some of the people.

I'll keep my fingers crossed!

Maddy said...

I've been looking into Chinese medicine [not acupuncture eek!] but more for a 'way of living' rather than anything too scientific. You know me, limited brain capacity at the best of times.
Best wishes

JoyMama said...

I think the vibes & crossed fingers done good -- will post later...

runatthemouth, good point about how little is known about brains. We've been encountering it repeatedly in context of the epilepsy & autism. I've also become aware of how little is known about kidney cancer, how little about miscarriage, etc! Huge gaps.

Here's a link to what's really important about brains & brain capacity!