Friday, December 28, 2012

Snake Oil

If you are initiated into the world of special needs parenting, there are some very unusual skills you must develop. One of these skills is an ability to evaluate and implement the growing list of new vitamins, supplements, important medications and therapies that may improve the quality of life for your child.

Unfortunately, however, in developing this skill, we become particularly vulnerable to the sales efforts of a legion of carpet baggers, charlatans and pharmaceutical drug reps.


As a parent of a child diagnosed with an incurable disease, there is a very convincing inner voice that whispers in your ear.
 
"You must try everything. If there is a chance to help your son in any way, you must take it. If you look like a fool it does not matter. There is nothing more important than the health of your child."
 
But staying abreast of the "latest new thing" is a daunting responsibility.
 
You must sign-up for countless yahoo groups, facebook pages and twitter feeds. You must join national organizations, befriend PWS experts and participate in conferences. You must read every blog and every comment ever posted about Prader Willi Syndrome.
 
If you are a special needs parent, the ability to jump on the band wagon is not just a frivolous pursuit to keep up with the Joneses, it becomes an important way of life, a means of keeping informed of important new treatment options for your child.
 
The tricky part is learning to discern which treatments are good medicine and which are nothing but snake oil.
 
In our PWS community, it begins with a "buzz word" that starts to reverberate throughout our desperate ranks.
 
Unusual words like CoQ10, carnitine, melatonin, vitamin B12 and PharmaNAC are ease-dropped into our daily conversations. Slowly at first, and then building in intensity until they are spread through our airwaves like viruses.
 
Of course, each of these products serve a different function. Some propose to give our children more energy, others will help them to sleep better, there are even those that claim they will help control appetite, anxiety or skin picking activities.
 
My job as a "good parent" is to evaluate them all or face the unwanted scorn of my fellow parenting colleagues and PWS professionals.
 
So, in an effort to remain in good standing within my small community, I try them all.
 
 
 I must admit, at times I feel like a desperate and gullible mother, bringing her child to the latest wild witch doctor who waves his magic feather wand over my suffering child and proclaims with spiritual reverence and mad man intensity....
 
"Be gone evil spirits, be gone!"
 
I have spent countless dollars on countless boxes of vitamins and supplements that now sit untouched in the dark confines of our bathroom medicine cabinet.
 
But I have also discovered important therapies and treatment options that have made a significant difference in the quality of life for my son, treatments such as growth hormone, abilify and provigil, medications that have enabled my son to overcome obesity, manage anxiety and sharpen his cognitive focus.
 
So, I will continue my quest as the ever-evaluator of snake oils.
 
I will buy every magic pill recommended by my fellow comrades-in-arms.
 
I will fulfill my role as a "good parent" until one day perhaps we will find a legitimate cure that will enable my son to live a happy and healthy life, free from the effects of a terrible disease.
 
I will never stop trying to find a cure for my child.
 
 
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Lisa Peters, an ever-evaluator of snake oil, is also a mother of two children and author of the blog, www.onalifelessperfect.blogspot.com. To read more about our family adventures, please come visit.

Thank you for reading.

I would like to wish all of our readers a very safe, healthy and happy new year!

13 comments:

  1. I so know what you mean
    DH and I have focused a lot on 2 principles
    1. is there some evidence atleast ( more than anecdotal
    2. first do no harm

    ReplyDelete
    Replies
    1. That sounds like a very good rule of thumb.

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