dee45 Posted April 22, 2009 Report Share Posted April 22, 2009 Hi, the neurologis from University of Maryland looked into the use of topamax in the treatment of tics. She collaborated with a Dr. from Johns Hopkins and Georgetown --though there is no clinical data they have seen that is has been effective in treating tics. She wanted to start my son on 25mg however I told her if I start at all I want to start at the lowest dose 15mg. She agreed to that but I am so nervous. He is on Clonidine 0.1 mg 1 and 1/2 pills at bedtime and 0.1mg 1 in the am. I asked her if I should wean the clonidine first and then start the Topamax and she said no to start the Topamax and we would wean in a couple weeks. i just need some input from who ever is currently using the drug. I am so torn on what to do. Deanna Link to comment Share on other sites More sharing options...
mommyof2 Posted April 22, 2009 Report Share Posted April 22, 2009 Deanna I understand your concern, I have my son on Topamax. I started with 25 mg sprinkle caps and in 10 days we went to 50mg... i said I would never go higher. We put our son on this around Christmas and he is doing wonderfully. We do not limit any food intake or video play. Of course we as parents do not let him overdo either but not because of his tics. He was diagnosed by our pediatrician with complex tic disorder. He was having alot of jerking in his body, some vocal noises and now we have nothing. He is in fifth grade and the tics were very noticable this year and kids were really teasing him, which pushed me to find something to help him. We did try many many other natural medicines, cranial sacral, took him to a healer and chiropractic. I do notice when he gets excited or nervous he hits his hand on his leg, but I just consider that a nervous tic like alot of people have...such as bitting your nails when nervous. He no longer makes any noises. His pateranl grandparents saw him for Easter... they have not seen him much in the past few months and she commented to me wondering if our son was outgrowing his tics because he seemed so much better. I hadn't told people we was gong on the medicine to see if they noticed it. I then told her, she was just amazed by the success he is having. My parents could see the change way back in January since they see him more often. Even parents of his baseball friends have commented to me on the change in him from last season. The biggest side effect I can see is he is a ltitle more tired and ready for bed. I give him his medicine at suppertime but during baseball game nights I wait until after the game. I notice his pitching is not as strong right after taking the medicine. The doctor said at this small dosage the fear of kindney problems and such is very slight chance of happening. I see such a change in my son and he comments on how happy he is they are gone and his biggest fear is for them to return. Hoping for you the same success we have had....... Mary Hi,the neurologis from University of Maryland looked into the use of topamax in the treatment of tics. She collaborated with a Dr. from Johns Hopkins and Georgetown --though there is no clinical data they have seen that is has been effective in treating tics. She wanted to start my son on 25mg however I told her if I start at all I want to start at the lowest dose 15mg. She agreed to that but I am so nervous. He is on Clonidine 0.1 mg 1 and 1/2 pills at bedtime and 0.1mg 1 in the am. I asked her if I should wean the clonidine first and then start the Topamax and she said no to start the Topamax and we would wean in a couple weeks. i just need some input from who ever is currently using the drug. I am so torn on what to do. Deanna Link to comment Share on other sites More sharing options...
myrose Posted April 23, 2009 Report Share Posted April 23, 2009 We were also on Clonidine but stopped completely before starting or condsidering Topamax. It may make one really drowsy with the two??? At such a low dose of clonidine, we never had to wean down. We just stopped and all was okay. I thought being that it sort of slowed her body down that after stopping it she would go FAST! if you know what I mean, but I do not remember that. We stopped the clonidine because of the rare side effect...Nightmares! and VERY LOW blood pressure. Goodluck to you and only you as the Mom can know and will know what is best for him. I pm'd you a short while agp... Link to comment Share on other sites More sharing options...
dee45 Posted April 23, 2009 Author Report Share Posted April 23, 2009 hi, I did not see your post prior to sending you a message. He is on 0.1 mg clonidine 1 and 1/2 tablets at bedtime and 0.1mg one tablet in am. I think I may still have to wean off--the dr. keep on both Topamax and clonidine then wean but I am not sure I am comfortable with that. Thanks so much I hope we have the same success. We have been dealing with nightmares a few times a night for over a year--look forward to those stoppping and getting a entire nights sleep. Deanna Link to comment Share on other sites More sharing options...
myrose Posted April 23, 2009 Report Share Posted April 23, 2009 Our Doc said it was okay to just stop the clonidine. I believe it was because it was such a low dose. Please double check with your doc, maybe you do have to wean with the dose he is getting. Its very important to wean from it (at least from what I understand anyhow) Maybe you could ask your doctor if you could start cutting the dose in 1/2 the same day you start the topamax?? Link to comment Share on other sites More sharing options...
Dedee Posted April 23, 2009 Report Share Posted April 23, 2009 Deanna, I just wanted to comment on the Topamax. My son is PANDAS, so I spend most of my time on the PANDAS board. When we went to the neurologist two years ago when my sons tics were at their worst, she suggested topamax. She said it was very new in the treatment of tics, but showing great results. She is supposed to be one of the best in the field of neurology. We did not choose to go that route because of the PANDAS and we were looking for antibiotic therapy. Unfortunately, she was not a PANDAS believer. I also wanted to mention the Topamax is used for the preventative treatment of migraines and that I take it for this reason. It has been a life saver for me. My migraines are almost completely gone. There are a few side effects. Weight loss is seen in most people. Also, some issues in the first few weeks with difficulty formulating words. It is hard to explain, but you have difficulty finding the right word to explain what you are trying to say. That usually goes away after a few weeks. Also, it can change your taste sensation for a couple of weeks. I didn't experience that. Really, though, I felt the reward very much worth a couple of weeks of minor inconvience. I have heard of others who have used it for tics with good results. I hope the information helps with your decision. Good luck. Dedee Link to comment Share on other sites More sharing options...
dee45 Posted April 23, 2009 Author Report Share Posted April 23, 2009 Hi , thanks for the post. I am starting at the lowest dose 15mg. ANything has to be better than the clonidine he has been on. Nightmares every night we may get one night out of a week when he doesn't wake. I did pick up the prescription so i hope I get the good results everyone else is having. I will keep you updated. Deanna Link to comment Share on other sites More sharing options...
myrose Posted April 23, 2009 Report Share Posted April 23, 2009 Sorry to hear of your side effects but luckily they were short lived. My daughter never experienced any of that nor any other side effects because of the low dose and also the reason why I started low and stayed low. A neighbor on the other hand who is an adult and takes an adult dose does have some not so pleasant side effects that come and go. She said they do not bother her much and after having migraines more than 2 or 3x a day she is happy that its helping her. She actually went back to work after staying in doors for almost two years! Again I guess the quality of life there helped in the decision to start the topamax after years of trying everything else. We are coming off from Topamax on June 4th.....Wish is luck!!!!!!!!!!!!!! Link to comment Share on other sites More sharing options...
dee45 Posted April 23, 2009 Author Report Share Posted April 23, 2009 The side effects I talked about are from the clonidine---I have not started the topamax yet. Deanna Link to comment Share on other sites More sharing options...
myrose Posted April 24, 2009 Report Share Posted April 24, 2009 Oh yes I know....I was just commenting on DeDee's post (sorry to confuse you) She takes it and spoke of some side effects she had early on....... Link to comment Share on other sites More sharing options...
dee45 Posted April 24, 2009 Author Report Share Posted April 24, 2009 OOps sorry about that starting to wean clonidine last night--have a great weekend. Will keep you posted. Deanna Link to comment Share on other sites More sharing options...
mommyof2 Posted April 24, 2009 Report Share Posted April 24, 2009 Healthy Wishes sending your way...hope you daughter does well off the topamax!!!!!!! I am looking forward to the day we go to 25mg going to give it a year or so first. Funny topamax is to help with migraines...... my son complains of a headache alot... even before the topamax. I was hoping this would help him but it hasn't. I know it is mostly from stress though, he gets so worked up when he has alot of work ahead of him for school. Hates riding in the car and working in the computer lab at school...those don't help. Well anyways I will be thinking of you June 4 Mary Sorry to hear of your side effects but luckily they were short lived. My daughter never experienced any of that nor any other side effects because of the low dose and also the reason why I started low and stayed low.A neighbor on the other hand who is an adult and takes an adult dose does have some not so pleasant side effects that come and go. She said they do not bother her much and after having migraines more than 2 or 3x a day she is happy that its helping her. She actually went back to work after staying in doors for almost two years! Again I guess the quality of life there helped in the decision to start the topamax after years of trying everything else. We are coming off from Topamax on June 4th.....Wish is luck!!!!!!!!!!!!!! Link to comment Share on other sites More sharing options...
melanie Posted April 24, 2009 Report Share Posted April 24, 2009 OOps sorry about that starting to wean clonidine last night--have a great weekend. Will keep you posted. Deanna Hi dannys Psy said she would consider topamax for him 25mg we will discuss it more on monday(ill have the weekend to research the heck out of it) SHe said she doesnt use it much and only found 1 atticle about 2 people who it had success I guess she doesnt spend alot of time on this site anyway she commentethat it nhas a mental dulling problem is that with everyone? Danny has asd also does any of the kids using it have a duel dx? aLSO His D>A>N>dr wants to try the azit 1x per week He said he went to a confrence last weekend and thats the protocol now ? I trust him but I trust you guys too ... Link to comment Share on other sites More sharing options...
dee45 Posted April 24, 2009 Author Report Share Posted April 24, 2009 Hi, what is the weekly dose of azith 500mg?? i am startingmy son on 15mg they wanted to start him on 25mg but i am starting at the lowest dose. Deanna Link to comment Share on other sites More sharing options...
melanie Posted April 25, 2009 Report Share Posted April 25, 2009 Hi,what is the weekly dose of azith 500mg?? i am startingmy son on 15mg they wanted to start him on 25mg but i am starting at the lowest dose. Deanna Hes going to go to 250 1xper wk azith I think I want to try the topamax I feel like i need to try everything give it a shot ya know He went to neurofeedback again today 3x so far the dr who does it said he seems calmer hes not hyper but.. he seems ok nothing better nothing worse he was ticcing more this week than last I think its either the vit or the lexapro i cut the vit C 1/2 we will see what happens How much does your child weigh? Dan is 130 Im afraid he wont eat on this the tenex is bad enough I want to come off of that too Link to comment Share on other sites More sharing options...
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