Any new Tourettes research?

[VTXRaider]

thanks for that info Rick and I am glad to hear this is working for your child

 

according to Wiki this drug causes early breakdown of dopamine which may be why it is helpful for TS

 

However..................

 

wiki mentions it having a SIDE EFFECT of parkinsonism!! so I am surprised you have heard it is used *for* parkinsons??? maybe I am missing something???

 

Wiki also mentions *DEPRESSION* as a major side effect of this drug, along with other side effects

 

 

http://en.wikipedia.org/wiki/Tetrabenazine

 

I guess after our horrid experiences with pharmaceuticals in both my husband and my son...I tend to look deeply at potential short term *and* long term side effects first so sorry if I appear negative here.

 

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

[Chemar]

Hi Rick

yes, i realize different people react differently to different things...this forum is sure a testimony to that

 

and I can see why this med is reducing tics. It seems it would, as it causes dopamine to be more rapidly metabolized if I understand correctly, so there would be lower dopamine...that is what is wanted for people with TS

 

my puzzlement is mainly on how something that effectively reduces the dopamine levels can be helpful for PD patients. They NEED more dopamine.

does anyone have a link to anything about this med being used for PD as well? I would just really be interested to see how something that is lowering dopamine could benefit in parkinson's

 

again, my biggest concern re TS treatment with this would be the side effects, especially depression. many with TS already have a hard time with depression so something with the potential to increase that is potentially problematic in those susceptible IMO

[VTXRaider]

Hi Rick

yes, i realize different people react differently to different things...this forum is sure a testimony to that

 

and I can see why this med is reducing tics. It seems it would, as it causes dopamine to be more rapidly metabolized if I understand correctly, so there would be lower dopamine...that is what is wanted for people with TS

 

my puzzlement is mainly on how something that effectively reduces the dopamine levels can be helpful for PD patients. They NEED more dopamine.

does anyone have a link to anything about this med being used for PD as well? I would just really be interested to see how something that is lowering dopamine could benefit in parkinson's

 

again, my biggest concern re TS treatment with this would be the side effects, especially depression. many with TS already have a hard time with depression so something with the potential to increase that is potentially problematic in those susceptible IMO

 

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

[Chemar]

I am so sorry you felt defensive Rick. That was in no way my intention ):

 

I have a deeply questioning way of approaching things as that is the way my mind works, and was actually more asking general questions because the med was mentioned as helping both parkinson's and TS and that had me intrigued, not challenging your good experience with it for your child's TS

 

I only ever mention side effects when I notice them listed for anything...and yes, that includes supplements too

 

I do apologize if you have misunderstood my questions as criticism as that is not what I meant it to be at all

[kim]

Lots of TS studies and recent research

 

http://www.medworm.com/rss/search.php?qu=T...p;r=Any&o=d

 

Rick, I wanted to let you know that I shared a lot of the info that you posted with a young man who has become a very special internet friend over the past few years. He recently underwent an operation where he literally had lesions burned on his brain to try to lessen his motor and vocal tics. He has been on almost every drug known to man. Some have had some really horrendous effects. I know one Dr. had suggested trying to obtain this drug for him a while back.

 

He has had ups and downs since the surgery, and is currently using an old med and doing quite well (he thinks the surgery alone may have had about a 50% improvement rate but again there are ups and downs) He really appreciated the info.

 

I hope you are able to overcome the feeling of defensiveness and keep participating here. Knowing Cheri's compassion and well rounded responses, I'm positive that was not her intention at all. Her questions were the same as things that I was wondering!

 

I found some info that may help explain. I was actually looking at studies regarding the use of nicotine. On one of the TSA links that Cheri provided a while back, I saw where they said something like the apparent helpful effects of stimulating nicotine receptors made them wonder if blocking them could also be helpful. That made no sense to me at first, but then I read where it's thought that the use of nicotine could actually be causing the receptors to become less sensitive. I'm wondering if degrading the dopamine with the use of a drug like Tetrabenazine could stimulate receptors sites which could be beneficial in Parkinson's? It seems when the body is lacking something or receiving too much, it will compensate with altered receptor sites? I'm sure this is a WAY simplistic attempt at an explanation, but just a thought on one of the paradoxyl effects that can sometimes be seen.

[VTXRaider]

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

[guy123]

On August 15th the FDA approved Tetrabenazine and is now available in the US.

 

Cool. I've updated my drug document which had Tetrabenazine listed as not approved for FDA use.

[lynnie1264]

Hi... Thank you so much for the information, lets hope that this is a new break through . Please keep us posted on any new info you find out.

Lyn.