dee45 Posted April 25, 2009 Author Report Share Posted April 25, 2009 Hi, my son is 9yrs and weighs 69pounds. we tried tenex awhile back and it was more sedating than the clonidine though its supposed to be less sedating. I am starting on 15mg of the Topamax one is because of his size and because I like to have the best response on the lowest dose. I will keep you posted. Deanna Link to comment Share on other sites More sharing options...
melanie Posted April 26, 2009 Report Share Posted April 26, 2009 Hi,my son is 9yrs and weighs 69pounds. we tried tenex awhile back and it was more sedating than the clonidine though its supposed to be less sedating. I am starting on 15mg of the Topamax one is because of his size and because I like to have the best response on the lowest dose. I will keep you posted. Deanna Does your son have anyother DX aside from tics/tourettes? danny has ASD and tourettes/Pandas (better now)did u try the patch clonidine?Im not sure if hes not sleeping at night with the tenex or if the daytime dose is makeing him tired I put a call into the neurologist to ask her that question ahe will call me tomorrow I hope. Did the clonidine help at all? does your child have verbal or motor tics ? Im nott sure what to do ..I hate this!!!! Link to comment Share on other sites More sharing options...
dee45 Posted April 26, 2009 Author Report Share Posted April 26, 2009 My son started with vocal tics then replaced it with facial like tics and jerking his head forward--he has really no other issues--some OCD but nothing major--I feel your frustration it has been a long year as well we have tried everything from diet , vitamins etc...... the clonidine was being used because of the social issue of kids teasing him it was not as sedating as the tenex--we did try the patch last summer--he is always playing something and the patch would come off I treid numerous ways to reinforce it but it just did not work for him so back to the oral meds. I have almost weaned the clonidine --I am excited and nervous about the Topamax I am not a big advocate of meds but if they will help with minimal to no side effects why not. He has ? PANDAS but I don't think he is getting proper treatment with that either. Talk to you soon. Deanna Link to comment Share on other sites More sharing options...
melanie Posted April 28, 2009 Report Share Posted April 28, 2009 My son started with vocal tics then replaced it with facial like tics and jerking his head forward--he has really no other issues--some OCD but nothing major--I feel your frustration it has been a long year as well we have tried everything from diet , vitamins etc...... the clonidine was being used because of the social issue of kids teasing him it was not as sedating as the tenex--we did try the patch last summer--he is always playing something and the patch would come off I treid numerous ways to reinforce it but it just did not work for him so back to the oral meds. I have almost weaned the clonidine --I am excited and nervous about the Topamax I am not a big advocate of meds but if they will help with minimal to no side effects why not. He has ? PANDAS but I don't think he is getting proper treatment with that either. Talk to you soon. Deanna Ok does anyone have any research on topamax and tics? Neurologist said theres none !!! I need help Link to comment Share on other sites More sharing options...
dee45 Posted April 28, 2009 Author Report Share Posted April 28, 2009 Hi, there is no clinical data to my knowledge--however my neurologist collaborated with person who is in charge of the movement disorder clinic at University of Maryland and they are using it with good results. My neurologist has never used it for tics/tourettes it took her a few weeks to get info, but now is willing to try. Deanna Link to comment Share on other sites More sharing options...
melanie Posted April 28, 2009 Report Share Posted April 28, 2009 Hi,there is no clinical data to my knowledge--however my neurologist collaborated with person who is in charge of the movement disorder clinic at University of Maryland and they are using it with good results. My neurologist has never used it for tics/tourettes it took her a few weeks to get info, but now is willing to try. Deanna Hi my neurologist is the head od neuro at Columbia Presp in NY she was so sure that there no evidence that it will help but his psych from UMDNJ says she she will if neuro seems to think its ok anyway did u start? Link to comment Share on other sites More sharing options...
melanie Posted April 28, 2009 Report Share Posted April 28, 2009 Hi,there is no clinical data to my knowledge--however my neurologist collaborated with person who is in charge of the movement disorder clinic at University of Maryland and they are using it with good results. My neurologist has never used it for tics/tourettes it took her a few weeks to get info, but now is willing to try. Deanna Hi my neurologist is the head od neuro at Columbia Presp in NY she was so sure that there no evidence that it will help but his psych from UMDNJ says she she will if neuro seems to think its ok anyway did u start? That didnt sound right like i was trumping mds sorry thats not the way i meant it to sound Link to comment Share on other sites More sharing options...
dee45 Posted April 29, 2009 Author Report Share Posted April 29, 2009 Hi, started tonight 15mg at bedtime I will keep you posted. Deann Link to comment Share on other sites More sharing options...
VTXRaider Posted April 29, 2009 Report Share Posted April 29, 2009 My son started with vocal tics then replaced it with facial like tics and jerking his head forward--he has really no other issues--some OCD but nothing major--I feel your frustration it has been a long year as well we have tried everything from diet , vitamins etc...... the clonidine was being used because of the social issue of kids teasing him it was not as sedating as the tenex--we did try the patch last summer--he is always playing something and the patch would come off I treid numerous ways to reinforce it but it just did not work for him so back to the oral meds. I have almost weaned the clonidine --I am excited and nervous about the Topamax I am not a big advocate of meds but if they will help with minimal to no side effects why not. He has ? PANDAS but I don't think he is getting proper treatment with that either. Talk to you soon. Deanna 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 Link to comment Share on other sites More sharing options...
dee45 Posted April 29, 2009 Author Report Share Posted April 29, 2009 Hi Rick, thanks so much for the link--they must be doing the same studies at the movement disorder clinic at the University of Maryland thats where my neurologist got her info she herself has never uses it for tics until now. How old is your son? What dose is he on and how is it going? Thanks Rick look forward to hearing back from you. Deanna Link to comment Share on other sites More sharing options...
melanie Posted May 5, 2009 Report Share Posted May 5, 2009 Hi i picked up the topamax script 25mg Im going to start tonight with danny please pray that this helps him were sooo stressed here I feel so bad for him he is struggling My concers are about his processing speed he has capd which I think contributes to his tics Verbal swearingg) etc I know topamax has an impact on congnition any one have problems? wish us luck Melanie Link to comment Share on other sites More sharing options...
dee45 Posted May 6, 2009 Author Report Share Posted May 6, 2009 Good luck Melanie!!! my son has been on 15mg of Topamax for 1 week today his tics involve his head and rolloing his eyes. 1 week and no side effects noted. We are seeing a decrease every day with the tics. So I hope you have good luck as well. My neurologist told us it takes a good 2 weeks to see where you will be. I have a script to increase to 25mg but will wait another week to see how things are. Keep us posted. Deanna Link to comment Share on other sites More sharing options...
melanie Posted May 6, 2009 Report Share Posted May 6, 2009 Good luck Melanie!!! my son has been on 15mg of Topamax for 1 week today his tics involve his head and rolloing his eyes. 1 week and no side effects noted. We are seeing a decrease every day with the tics. So I hope you have good luck as well. My neurologist told us it takes a good 2 weeks to see where you will be. I have a script to increase to 25mg but will wait another week to see how things are. Keep us posted. Deanna Im so glad to hear that hes doing well on the topamax We started it last night 25 mg hes 130 lbs I want this to work sooo bad I pray so hard for some relief Does your son have anyother dx is he a PANDAS kid? We did allergy testing yesterday Im hoping I can get some answers keep in touch Ill do the same Melanie Link to comment Share on other sites More sharing options...
bmom Posted May 6, 2009 Report Share Posted May 6, 2009 Dee, Just wondering if your son is using sprinkle caps or the other? Thanks. Link to comment Share on other sites More sharing options...
dee45 Posted May 6, 2009 Author Report Share Posted May 6, 2009 Hi, My son is on the sprinkle caps. I am pretty sure that at 15mg thats the only way they come. Deanna Link to comment Share on other sites More sharing options...
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