Thursday, February 20, 2014

Slither away from that snake-oil

We just received more unexpected positive feedback. The hydrotherapist was so emotionally moved by C's profuse leg action today she had tears in her eyes. Which, in turn, gave me a few tears of my own. She said: "Whatever you're doing with the meds, keep it up!"

One moral here is: don't shun conventional medicine to grasp at "alternative" straws.
The temptation to do just that can be huge. Often, the conventional route reaches an impasse. It can be years before a new development offers fresh hope for your child. At those nadirs, alternative therapies may seem like the only options. They come cleverly wrapped in sophisticated pseudo-medical jargon that lure many of us to dig deep into our wallets to "just try".  

As I've written, years ago the hubby and I were victims of scores of such snake-oil salesmen. Our tally was 35 of them: from cranial sacral therapy, through Japanese acupuncture, to "healing", to osteopathy, to Chinese acupuncture, to chiropractics, and many more. 
This week I  learned  that not only weren't we alone we were in excellent company: 

A University of California study that appeared in last month's Journal of Developmental & Behavioral Pediatrics (title: "CAM Common in Children With Developmental Disabilities") found that complementary and alternative medicine (or CAM) is widely used for children with developmental delay. Parents with higher education resorted to CAM the most.  Families who utilized more hours per week of conventional services (>20 hours) were more likely to use CAM "including potentially unsafe or disproven CAM".
Good company notwithstanding, we need to resist the allure of all that false hope. It's just too pricey, both financially and medically. 


Anonymous said...

I would be really interested in hearing how other people determine if a treatment is helping. One problem with treatment of any kind is that it requires attention and discernment to evaluate these changes. Dealing with disability day in and day out can make us hyper aware of some changes and oblivious to others, all the while being lead astray by hope.

I've experienced some of the treatments you've listed and have found cranial sacral therapy to be helpful as an adjunct. Along with carefully titrated medication, physical therapy, psychotherapy and an array of specialist doctors, cranial sacral seemed to help ease some muscle tension and spasticity issues in my neck and temporalis. Cranial sacral helped more for these issues than Botox, steroid injections, and TENS. It wasn't a cure-all, but it created minor changes that were beneficial and greatly appreciated despite being minor.

If someone is telling you their specialty will change your life, RUN. If someone wants to work with your other care providers and is attentive, seems to speak honestly about limitations to their specialty or treatment, and can provide you with a range of expected time tables for treatment based on objectively understood factors, it might be worth it to try.

My brother and I found out a few years ago that our parents consulted an angel specialist (??) when we were kids. For a mere $1000 (we had no health insurance and always struggled with essentials), this person communicated with angels and performed a reading for my parents. I hope it gave them solace; I don't think it did. As My brother says, "What a horrible person."

I am very glad to read C. is less foggy. Seizure meds can snow us over big time! Keep up the great work!


The Sound of the Silent said...

it's great to hear from you, Erin. As your previous comments, this one is insightful and helpful. You correctly point out that I lumped all alternative treatments together - and shouldn't.

You note that cranial sacral therapy - which we tried - benefited you. One problem is that when a child cannot report subtle, internal changes parents can only assess treatments by more obvious, external signs. It's borderline guesswork at times.

With these limited tools, we found each of the 35 alternative treatments we tried for C. to be abysmal failures. (That was 35 different practitioners, some of them doing the same therapies).

A few of the therapists were sincere and genuinely believed they could help C. In fact one of them gave her acupuncture and shiatsu free of charge every week for a couple of years. But others were brazen con artists and Oscar-caliber actors.

One "healer" would move her hands slowly over C.'s body for a few minutes and then feign utter exhaustion because she had removed C.'s "negative energies" by inhaling them into her own body. She also tried to convince me that the doctors were mistaken about C.'s epilepsy. Her seizures were just innocent movements, she insisted. She urged me to stop giving her medication.

Ultimately, she blamed the squabbling of C.'s older sisters and the fact that my husband "didn't believe" for the failure of her treatments.

After my six free "trial" sessions, she began demanding several hundred dollars per session. I fled. She reminds me of the angel specialist who conned your parents.

Your guidelines for sizing up an alternative therapy are excellent. Of particular importance is that the therapist acknowledge his/her limitations. We are all familiar with that laundry list of ailments and cures that many alternative practitioners tout.

I wish you continued benefits from your current treatments - and even superior discoveries in the future.