Hope for Sam

[fiore]

I have been part of the tourette's internet chat community since my daughter was 5 years old. Over the years I have read posts that expressed my same feels, thoughts, and experiences with tourette's. Unfotunately, my daughter's condition is on the severe end of the tourette's spectrum scale (48 out of 50 on the Yale Severity Tic scale). We have experienced things that I would hope no other child with this condition would ever have to bear.

 

This last year my daughter was pulled from school and we were on the road to getting her DBS surgery (deep brain stimulation). We were set for surgery in April/11 but the neurosurgeon postponed the surgery in March until we completed cognitive behavior therapy and try the medication tetrabenazine (we had tried all the other tic meds with minimal success as well as alternative treatments). At the time of cancellation my daughter developed a very physical strong tic that fractured her hip (the ischial, which is that part of the hip which is the bone that is in the middle of your butt cheek). Since this was a tic, she could not stop doing it and as a result she was in chronic pain. To make a long story short, she was in pain for 5 months, hospitalized 5 times with a total of over 30 days in a hospital, and confined to a wheelchair for a month,and was given over 20 kinds of pain meds/muscle relaxers. What finally gave her relief was botox injections in her hamstring-this was something I had asked 4 doctors to do and everyone of them turned me down. Thank god for the pain management dr. that agreed with my request. She gave my daughter relief and allowed us to start accomplishing the last 2 items on our DBS checklist.

 

My hope in telling our story is twofold. One, to bring awareness for those with severe tourette's that DBS is an option and can be a successful one at that. Two, my daughter has a facebook page dedicated to bringing awareness, attention and generally, showing support for her as we seek this treatment. If you type in "hope for sam" on facebook, her page comes up. It would be great if you visit to "like" her page and spread the word.

 

To those of you who want to know more details about DBS and our story you can also go to caringbridge.org and type in Samantha Frank and read about our journey over the last year. I have become a "reluctant" expert in the area of DBS for tourette's, speaking to several families of children who have had the surgery as well as several adults. Also in my quest I have also spoken to several of the leading neurosurgeons in the country (there are very few)who have done this surgery with confidence. I have also witnessed and experienced the "politics" of this treatment among TS medical "experts" and found it shocking that I had to navigate cautiously through their biases. While DBS is not a cure,it can give those who's lives have been robbed by a condition that is relentless, a better life.

 

Thank you for your attention and support for the families and those who suffer with tourette's.