We don’t want you to miss out on some of the important feedback we’ve received from readers about our series Why the Tourette Syndrome Association Should Be Investigated.
We will continue to share comments from the series with premium subscribers each week; we know most people don’t go back to read them as they are added.
Our latest post in this series has links to the previous articles at the bottom of the page: See here.
1 K.Knobel: I’ve just stumbled upon this wonderful call to arms series and I really hope the messages get through to TSA because it is mind boggling that so many success stories and testimonials go largely ignored by the first organization people and parents seek help from.
I encourage you to consider using your platform to urge people (in an ongoing way) to share their testimonials and write letters and send them to TSA. They need to be barraged with non confrontational feedback, but not in spits and spurts- consistently and continually.
When our son was diagnosed more than a year ago he was in a bad way. The first person I spoke to was a volunteer at our local TSA chapter. They were so helpful and very calming, and gave me a list of doctors to call, support groups etc. Fantastic. But even in my emotional grief stricken state, I remember asking in that first phone call when we were discussing interventions if there are successful alternatives. To say the subject was dismissed is an understatement, I was told unequivocally, no, there was nothing, and “if there was something successful out there certainly an organization like TSA whose sole focus is TS would know about it and share it with their stakeholders.”
We were days away from putting our son on meds, but serendipitously had a phone call with another parent who eradicated her sons tics through diet and nutrition and I happened to order the Natural Treatments for TS book. While I would have preferred more science behind the stories, the number of first hand testimonials of interventions that had zero side affects and certainly wouldn’t hurt my son could not be ignored. With our psychiatrist’s surprising and supportive blessing we went on our way.
After much searching and researching we realized we were looking for an integrative pediatric doctor who specialized in a “bio medical” approach to treatment. Who knew, and let me tell you there is no listing for that. It is so hard to find specialists to help you with this kind of journey especially one that can oversee the whole process. The listings tend to be for adults and range for anti aging to substance abuse. It was vital to us that we had doctor supervision for supplements and it was also important that we found someone who specialized in pediatrics. We found a very reputable DAN doctor in the end.
We changed our family diet, no wheat, dairy, food coloring, processed foods, no refined sugar… sound familiar? The doctor also put our son on a number of supplements some of which are natural anti inflammatories and calm his nervous system. Within weeks the results were mind blowing. 5-6 simultaneous simple and complex motor and phonic tics to one motor tic. A year later I keep waiting for the other shoe to drop at peek periods- school, holidays… Still one tic, sometimes none. I think we could probably eradicate it all together if we were more diligent but we follow an 80/20 rule with all the restrictions. It’s a good balance for us- his only tic is not noticeable to him or others and we are not robbing him and his brothers of every joy in life at things like birthday parties and eating out.
Recently our son has had comprehensive testing blood, urine, and stool testing through this doctor and we have made significant discoveries which have enabled us to have an even more solid roadmap in his treatment plan.
This whole time I am constantly riddled by WHY no one looked at all this as a first course of action? We have learned so much about the why and building immune and neurological system health since working with this doctor. If we weren’t so determined and motivated he would be on a cocktail of drugs right now none of which would be addressing the underlying cause or disruptions in his system. It’s unfair to assume everyone has the resources or inclination that we did to find alternatives. It’s a sad failure of TSA to keep this out of the mainstream and not make these resources and stories readily accessible to their stake holders.
2 Giselle Yeatman: My son’s tics are almost completely mitigated by avoidance of allergens (gluten, dyes, chemicals), as well as with supplementing with vitamins and nutritional therapies that help alleviate the toxic load on his system. I’ve known forever that this isn’t in line with the TSA’s approach…much like the general medical community, anything natural (hence inexpensive) and done without the use of medicine (expensive) will be ignored.
3 Lynn Gehr: In the early 1990′s, our son had such severe tics that he could not attend school. A leading neurologist here in Phoenix told us that he had never seen such a severe case, and doubted that there was a more severe case in the U.S. Calls to the Tourette Syndrome Association were frustrating and yielded no helpful information. My son had ear-piercing shrieks that could be heard for blocks. His physical tics would have eventually caused permanent physical impairment. We heard about the allergy connection through Ginger Wakem and took him to an allergist in another state. Within a short period of time, he was back at school. He went on to college and is a normal, successful, virtually tic-free adult of 32 now. Put simply, TSA was not there for us and gave us no help when we needed it so desperately.
4 Heather: Thank you so much for your dedication to this site and for your unrelenting commitment to helping families find alternative and healthier treatments for their children. I left the TSA website in utter despair and panic. Hopeless.
The implementation of the information and suggestions provided here and through the forums has equaled a tremendous amount of tic relief for our son and hope for our family. After researching we tried alternative options which have mitigated motor tics 90-95%. Removal of all household chemicals, avoidance of milk plus a mostly organic diet with supplementation has worked wonders. Humbly we are not out of the woods but extremely hopeful.
Thank you and kudos to all of the bold pioneers who dare to think outside of the box and advocate on behalf of children.