Silencing our Stories of Alternative Therapy

Years ago my family was told by a doctor to immediately remove all glutens and caseins from our diet. That doctor and another also encouraged us strongly to start a cocktail of vitamins and supplements, known as the mito cocktail. When we came home our pediatrician was very dismissive and underwhelmed by their advice. She didn’t think we really needed to make these changes.

We chose to push forward make the dietary changes and add the supplements.

Over the years my children have shown clinical and lab proven changes for the better. Do these changes take away mitochondrial disease? No. Do they help us in other ways yes.

But can I tell you that story? Perhaps not according to the FDA and their regulators. A friend of mine Tabitha recently got the raw end of the alternative medicine experience sharing her family’s story. Makes me wonder if you and I can share our experiences with dietary changes, supplements, or other alternative therapies.

Here is what happened to Tabitha…

Meet Penny 

So, the FDA is telling you that you cannot share your personal experiences? This is one of the scariest things I have ever heard.

I can only share what is proved by scientist. I cannot mention specifically an ailment or what I used for the ailment.

I am just a mom. hmmm that is a HUGE just and I am proud of that mom status! I am aware of the changes that have happened in myself when I went gluten free and my children’s changes. I find it ridiculous to try to muzzle simple sharing of personal experiences.

Can I talk about trying a Paleo diet, essential oils, music therapy, not too long ago visual therapy was considered alternative. Sensory integration disorder was made up and OT therapy was useless. We know now that visual therapy and OT therapy for sensory issues is incredibly helpful.

I also think that being able to share my own story is my right. It’s over reach to tell me what I can and cannot write on my blog as long as I am not pretending to be a dr and lying about the product/therapy/diet to make money. Go watch a show like 60 minutes and you will see health stories about how bee stings help MS patients. Are they too being censored for talking about alternative health options?

What do you think? Should alternative health options be kept off-line and only those validated by FDA science be allowed to be published? Where is the line between snake oil (fake solutions) and real alternative options?

I am going to keep talking about our personal experiences as a mom. You are welcome to leave a link to your personal stories as well.