Hi don...I have tourette syndrome also. I am 20 years old and have had ts since I was 5. It started out as motor tics and now I am vocal. I have had no luck with any medications. I think I am finally going to get some relief though...For once. I am on orap and have been for a while, I have been on it most of my life basically. I just recently added topamax to the orap and I notice awesome control over the tics, the ability to hold back and it has taken away or minimized most of my motor tics such as spitting and banging my teeth together. Its tough I know. I have been on pretty much everything. I have a whole list I could name for you. I would name them for you if you want so write back and let me know. I am only on 50 mg of topamax right now and 3 mg of orap. Tomorrow I increase to 100 mg of topamax which is november 8th. I can eventually go up to 400 mg a day with the topamax. Good luck to you and its a shame no one has responded to you except for me. That bites. Take care. :d

You still around here to read replies?

My 10 year old son has turretts and nf type 1. He hasn't prubity yet but the doctors say that is when we will see the true effects of turretts. Right now my son is only taking sretarra 20mg at night. I might have missed spelled the name of the med. He seems to be doing better with the meds so far. The one thing that I have notice to help is a strick routine and his dietary intake. Less suger less meltdowns and tics. You would be amazed on the type of kid he is when he is following his diet and is on his routine. It is hard to say no to my child you can't eat this or no you can't have that because of your turretts but he is much more calm in the end. Good luck to all.

My son is 7 and takes catapres (1.50 mg) at night. It really helps him with his tics during the day. He is very intelligent (a full grade ahead in school), going for his 3rd belt in karat next week, and he plays hockey in a league. Doing very well. But as he matures, more "side" issues are coming to the surface like hyperactivity and oppositional behavior. He's a great kid but the hyperness drives me nuts! I try my best to let him "be a kid" but sometimes it just overwhelms me and he gets in trouble for it. I'm working on my reactions (due to the fact that hes not doing it on purpose). Getting better at it.
Now my 3 yr. Old daughter is showing signs of ts. I hope to god it's only a "child hood" tic but i'm all too familiar with the onset of tics. My son had ocd terribly at age 2! She's not exhibiting ocd as of yet, but definately eye/facial tics. Breaks my heart when she says, "mommy, my eyes are blinking again". I suffered as a child but back then it was just "he's a little weird, he'll grow out of it". Turns out that I did not grow out of it. I grew into it. See what happens when my add kicks in?

My son is 12 y/o and was diagnosed this past summer with TS. Before that we had been told that he had simple motor tics from his pediatrician and he was put on Orap. When we went to see the neurologist this summer they changed his medicine to Clonidine which caused my son to become depressed. Diehlan is normally a very happy child, hyper- most definately but the depression was too much. Our neurologist wanted to keep him on Clonidine and wanted him to go see a psychiatrist. I decided to get a second opinion, as parents it is our respponsibility to do that if we feel our child is not receiving the proper care. Absolutely love our new neurologist, he took him off the Clonidine and said there was no reason to see psych. if it was the medicine causing depression. He put us on Topamax, 75 mg a day. Diehlan is really doing well on new medicine, tics have almost stopped and we ave not experienced any major side effects.

I had TS when I was in my youth, faded away at age 20 or so. I'm 35 now and in the past few years it started to return, and was either worse, or seemed worse since I have greater responsibilities now. I was having problems driving due to eye tics most of all. In my youth I tried clonidine, didn't work and made me too drowsy. I also tried haldol, worked over time but the benifits didn't out weigh the side affects(not to mention the associated risks). I recently went to a neurologist for the first time in years, and I asked if there was anything new now days. He gave me Topamax, and I swear, I can already notice a great difference. In addition, I can take my daily dose at bed time, so I don't have to worry about suffering the drowsy effect during the day. I think they might be on to something here, perhaps TS is a type of light epilipsy in itself. So far i'm pleased with the medication, it's even helped me cut back on drinking(not that I drink much), I hear they are considering approval for alcoholism treatment. Anyway, I just happened to land here while surfing so i'll probably never be back, but if you or your child has TS, ask about this drug...I think it might become a common treatment.

Have you heard of or tried baclofen? I was diagnosed with TS 5 years ago...btw i'm 19. I have been on this for over a year and it seems to help better than anything else had.

Hi everybody, I have a 10 years old boy with Tourett syndrom. He was diagnosed at 5 years old, he took all kind of medication, dexedrin, strattera, orap, haldol, even ativan, right now he is in a severe state. TADH with Tourett. We went to the neurologist on thursday, He was taking, Strattera 25 mg / day, Haldol 1 mg / day, and Adderall XL 25 mg /day. Because of his mood swings (aggressive) he decided to take him off the Strattera and replace it by Topamax. He started friday. I've stopped the Strattera and gave him topamax 25mg at bedtime /for the first week combined with Haldol 1mg bedtime, and the neurologist decided to put up his Addrall to 30mg in the morning. For the next 4 weeks, he'll be adding on more topamax.
week 1 = adderall 30mg morning
Haldol 1mg bedtime
Topamax 25mg bedtime
week 2 = adderall 30mg morning
topamax 25mg morning
Haldol 1mg bedtime
topamax 25mg bedtime
week 3 = adderall 30mg morning
topamax 50mg morning
Haldol 1mg bedtime
topamax 50mg bedtime
week 4 = adderall 30mg morning
topamax 75mg morning
Haldol 1mg bedtime
topamax 75mg bedtime

Do you find the doses high for topamax in daytime. I'm affraid he'll be confused at school and sleepy. What do you think ?

Thanks for answering