VTXRaider

Ok does anyone have any research on topamax and tics? Neurologist said theres none !!! I need help Sounds like you need a new Neurologist. Hopefully I can give you some info from my son's Dr.'s at Baylor College of Medicine. The drug is actually Topiramate and is branded as Topamax. I have a link that will show you a study that Baylor performed this this year. If you go to their site you can search Topiramate and bring up some of their research. Best Wishes http://www.bcm.edu/neurology/pdf/poster_pd...amateTS_MDS.pdf Rick

On August 15th the FDA approved Tetrabenazine and is now available in the US. If anyone is interested in any of the research data in regards to side effects or efficacy of this drug I've provided a link to Baylor's findings. This drug has also been shown as a viable treatment for Tardive Dyskinesia. Baylor College of Medicine has also done research with Topiramate as a treatment for Tourettes and that data along with a whole lot more is listed as well. http://www.bcm.edu/neurology/poster/index.html Rick

Honestly I never paid much attention to Parkinson's disease and it's causes. All of my energies up to this point have been spent on the relationship of Tetrabenazine to TS. If it's important to you I will gladly ask Dr Jankovic at our November appointment how this drug can help Parkinson's patients. My son's anxiety/depression is better than it's ever been. I know this is not because of the Tetrabenazine. I do believe though it's because of the reduction in his tics that his overall stress level is down. He used to cry every morning before school (during Waxing Phase) because he knew he would be in for a long day with the tics and the ridicule from classmates. He's now just happy go lucky and can't wait to get in the 4th grade. This has been a life changing event for us. I understand your concerns with side effects as I'm sure every parent is when dealing with a loved one. What are the long term side effects of St John's Wort, 5HTP, Magnesium and all of the other over the counter supplements we give our children on a daily basis? I see now why I haven't posted here in the past 2 years. I read Lynnie1264's post and thought it would be a good opportunity to share my story with her as she was asking about NEW research. Instead I've been on the defensive since my first post. All I was trying to do is share my experiences and hopefully help someone else who may have tried everything and is looking for another option. If anyone has any further questions please PM me Thanks

Your response is about what I expected as it was mine in the beginning. Most of the data on WIKI in regards to this drug is old. As a matter of fact to this day there is still not enough credible info on the web to make any opinions on this drug for or against. I made the appointment and flew to Houston with my son and saw enough while I was there that made me feel comfortable. I was prepared to come home without this drug if I wasn't convinced that this was my son's best course of action. Dr Jankovic and his colleagues shared all of the clinical data with us and walked us through all of my son's options. The appointment was unbelievably thorough as you can imagine when introducing an 8 year old to unapproved FDA medicine. I was very concerned about depression as my son suffers from anxiety/depression. We followed Dr. Jankovic's titrating schedule and have never had any issues. We dose to effect and are currently only at half of the original prescription. In a more recent study they found that depression was all dose related and if monitored would not be an issue. I suspect that's one of the reasons why in December the FDA got on board and is moving this drug along. I can understand your reservations with pharmaceuticals as I'm thankful we didn't follow our local DR's advice of trying a whole bunch of meds that they had no business prescribing in the first place. In my journey down this road I have found that each person affected by this disease responds differently to diet, supplements and prescription meds. What works for my son may not work for yours and vice versa. Early on I found myself chasing things and grasping at straws to make a connections. I remember not allowing my son to play video games for a whole week because I thought the screens might be the cause of his new eye rolling/twitching tic. For some, screens and light sensitivity can be a real issue but for my son it had nothing to do with his new tic. The number one best thing I ever did for my son was to create a tic log. It helped me understand his waxing and waning schedule. My sons' schedule repeated about every six weeks. His waxing would last about 10 days with an additional 5 days on the way up and down. Now if something happened during his waxing period I didn't overreact. I actually became a lot calmer knowing when it was coming and knowing it would only last an additional week or so. Even knowing this schedule we were forced to seek alternative treatments as his waxing was getting so extreme with vocals/movements. This log also helped me evaluate supplements and medicine better as I was able to compare it through his entire cycle. The first time my son tried magnesium taurate he was approaching a waxing phase and I knew it it ahead of time. When the waxing hit I did not blame the the magnesium as the source but instead let it stage follow it's course and kept him on. The next time his waxing came back it was much milder than previous stages. To this day the Magnesium Taurate has been a great supplement for my son. Rick

I believe the drug you are referring to is Tetrabenazine. Here in the US it's classified as experimental and can only be prescribed by Baylor College of Medicine. It's currently being fast tracked by the FDA and it's primary use has been with Parkinson's patients. My 9 year old Tourettes DX son has been on this for about a year as part of a clinical trial. We had originally tried diet, supplements ect. to no avail. He was prescribed Tenex and we reluctantly agreed. The Tenex did offer some relief to his tics but only for about six months. His Tics started getting worse and we considered taking him out of school when our local Dr's prescribed Risperidone and Clonidine as the next fix. My wife and I decided against changing meds and kept working on diet and supplements. I was not willing to just start trying a bunch of medications being prescribed by local Dr's who in my opinion knew less about my son's condition than myself. As my son's conditioned worsened I got referred to Mayo Clinic to meet with their team of pediatric neurologists. The main Dr. was very open with us and was very receptive to alternative approaches at dealing with my son's TS. She told me about Tetrabenazine and the success Baylor had been having with it, in not only Parkinson patients but with TS and many other movement disorders as well. My wife and I agreed that it was something our family should consider. The medicine is not covered by our insurance because it's not FDA approved yet. Any follow-up appointments have to be done in Houston which is 1300 miles away and plane ride for us. The results so far have been AMAZING! My son use to tic about every 5 seconds. As I said we were considering pulling him from school it was getting so bad. His tics are all but gone and there have been no side effects. It's nice to finally let my little boy be a little boy again without limiting him from the things that he enjoys because I thought they may have been contributing to his condition. As you can see this is my first post. While I come to this site just about everyday I am more of a reader than a poster. I share in many of your experiences and would like to thank many of you for helping me and my son. I have learned so much and I owe it this board Rick