Friday, September 23, 2016

Charlatans, snake oil peddlers, quacks, alternative practioners - take your pick and beware!

Hyberbaric oxygen therapy chamber
I have just read a piece (here) about children with autism and their parents' quests for cures. It describes the treatments - sometimes dangerous, usually exorbitantly expensive and unproven - that they try. I was transplanted back to the years the Hubby and I chased a cure for C.'s disabilities because the phenomenon described there is endemic to the entire world of children with disabilities.

As I've mentioned here before, in those days of desperation and blind hopes, we tried every approach and supplement we heard or read of. Often we repeated failed ones with a new "healer" just in case he'd be successful where a colleague of his hadn't.

I once tallied the number of "cures" we tried and reached 35. I never calculated the dollars and hours we squandered in those years when irrationality reigned.

Occasionally, the charlatans offered us free introductory sessions - which we invariably accepted. Once they started charging us, we often stopped the therapies. But there were those we pursued and financed for months - such as cranial sacral therapy, osteopathy (with two different osteopaths), acupuncture (both Japanese and Chinese), chiropractic (also with two different practitioners) and more. Some of the cures came in dark brown bottles and were home-brewed concoctions.

There was one compassionate woman, highly regarded in the world of this poppycock, who offered a grab bag of alternative remedies to C. without charge and indefinitely. After a couple of years, the futility of it finally struck us and we couldn't even bring ourselves to waste any more time on them, free though they were.

A healer in another city explained before the third - and last - free "introductory" treatment that he was "reconnecting C.'s brain cells". Despite the grip of desperation,we still retained a modicum of rationality and never trekked back to him.

I was reminded of his boast when I read this line in the above-cited Spectrum News article:
Once she pays off her $11,000 credit card debt from Cancun, Shearer knows what’s next: the Plasticity Brain Centers, which claims to reconnect neural pathways after their proprietary diagnostic technology pinpoints “the exact brain functions that need treatment.” Skye has tried other brain-related treatments, but this one, Shearer says, seems to take a different approach.
Admittedly more sophisticated than the claim we'd gotten. But then our charlatan wasn't charging big bucks. In fact, while we did squander thousands of dollars, there were far more pricey snake oil cures on the market which we just couldn't afford.  Thank goodness for our financial straits - I now know that some of those were actually risky (for instance hyperbaric oxygen therapy).

In any case, I highly recommend this piece to all you parents considering questionable treatments because there seem to be no other options out there.

Right now, we are still battling C.'s pressure sores, seeing significant progress with most but not all of them. Hoping the new diet - we reintroduced carbs after a hiatus of several years - will herald improvement in C.'s total protein/albumin levels and sore healing.

As for the edema she began sporting this past year, here (over on the right) is what her leg looked like one day this week. The doctor at the wound clinic saw it and wasn't concerned, so I've deleted it from my "worry list" (which is ample enough without as is).


Stubblejumpin' Gal said...

Oh, the exhaustion of searching and running to appointments and the frustration of not finding cures or relief!
I hear you, loud and clear.
And it's not just the quacks who can lead one astray. Conventional medicine is often no better. "Here, let's try this."
Making treatment decisions for a handicapped child is one of the most painful things I've had to do as a parent. Maybe the only painful thing, because it comes with so much uncertainty.
My son has benefited from treatments like cranial sacral massage and shiatsu, but a cure or great strides forward? No.
At least he's not suffering but is happy with his life and physically comfortable. I thank the powers that be, whatever those are, every day.

The Sound of the Silent said...

So right. Even the conventional doctors are often just groping in the dark too. At least our current pediatric neurologist is candid about this and is open to our suggestions and preferences. But she's a rarity.

Elizabeth said...

I owe much to Sophie's osteopath who we began seeing when Sophie was nine months old. She was an extraordinary woman who did cranial sacral therapy and traditional homeopathy. I believe she maximized Sophie's "potential." My two sons went to an osteopath regularly from the time they were eight days old, when they received their first treatment, to the present. They have never been on an antibiotic, despite having the normal childhood illnesses, including ear infections. Whenever they have a fall or particularly hard collision in sports or otherwise, I take them in to be treated. I, too, have had much luck with osteopathy and cranial sacral treatment. I really believe that if I hadn't surrounded Sophie with these things -- osteopathy, Chinese medicine, etc. -- she would be dead.