mommyof2 Posted June 28, 2011 Report Share Posted June 28, 2011 It has been awhile since I posted...i come back and read periodically but wanted to post a positive. My son, turned 13 in Feb., is doing wonderful at the time. He is taking 25mg of topamax which if things continue as they are I may consider to go down to 15 mg or take him off. He started with the ortho. last summer and i was worried things might get worse with teeth being pulled and jaw movements, but they haven't. I mentioned to our ortho. about Dr. Stacks and the jaw associations with Tics. He actually went to school with Dr. Stacks and our ortho is very familiar and treats TMJ. He put a herbst appliance in my sons mouth to pull his lower jaw forward. In a month that will be taken out. Also last summer we did have a big flare up on his tics, as we had the summer before. I was thinking it could have an association with chlorine in the pool. This summer we put a salt system in our intex pool but he does still swim occasionally in my parents chlorine pool. He has a few tiny unnoticable tics, such as an eyebrow lift but it is barely noticable to others just to a watchful mom. I am hoping that he is beginning to grow out of them, as my pediatrician assures me he will but I was not a believer. It is so nice to have a nice relaxing summer with the kids. Just wanted to let you know how things are...I am seeing a light at the end of this long tunnel. mary Link to comment Share on other sites More sharing options...
gators Posted June 29, 2011 Report Share Posted June 29, 2011 It has been awhile since I posted...i come back and read periodically but wanted to post a positive. My son, turned 13 in Feb., is doing wonderful at the time. He is taking 25mg of topamax which if things continue as they are I may consider to go down to 15 mg or take him off. He started with the ortho. last summer and i was worried things might get worse with teeth being pulled and jaw movements, but they haven't. I mentioned to our ortho. about Dr. Stacks and the jaw associations with Tics. He actually went to school with Dr. Stacks and our ortho is very familiar and treats TMJ. He put a herbst appliance in my sons mouth to pull his lower jaw forward. In a month that will be taken out. Also last summer we did have a big flare up on his tics, as we had the summer before. I was thinking it could have an association with chlorine in the pool. This summer we put a salt system in our intex pool but he does still swim occasionally in my parents chlorine pool. He has a few tiny unnoticable tics, such as an eyebrow lift but it is barely noticable to others just to a watchful mom. I am hoping that he is beginning to grow out of them, as my pediatrician assures me he will but I was not a believer. It is so nice to have a nice relaxing summer with the kids. Just wanted to let you know how things are...I am seeing a light at the end of this long tunnel. mary Hi Mary So glad to hear things are going so well. Just wanted to know how long your son has been on Topamax and if you do any diet/allergy elimination? My son has been on Topamax since October. Did really great on the 25 mg then it stopped. We upped it to 50mg and then had him allergy tested. He showed a sensitivity to dairy. Took him off dairy and in about 2 months we saw a reduction in the tics. Not sure if it is the topamax or the diet but I am too afraid at this point to change anything to find out. He still has a few tics now and again like your son but he is in a much better place. If you do decide to reduce the topamax please keep us imformed. Wishing you continued good health Leslie Link to comment Share on other sites More sharing options...
Chemar Posted June 29, 2011 Report Share Posted June 29, 2011 glad to hear things are going well for both of your children, Mary & Leslie Link to comment Share on other sites More sharing options...
trggirl Posted June 30, 2011 Report Share Posted June 30, 2011 Thanks for the update and glad to hear he is doing well. Do you mind my asking if he ever had focus problems and if so, what did you do about them?? Link to comment Share on other sites More sharing options...
mommyof2 Posted June 30, 2011 Author Report Share Posted June 30, 2011 He was on topamax since January 2009 and we have not really done much with dietary elimations other than watching red40 in his diet as well as not alot of soda. Last summer he had a flare up and we upped his dosage to as much as 75 mg but only for a week or so, once i saw it did not diminsh the tics he went back down to the 25mg. Trg girl...I do not notice alot in focus problem...he had gotten honors all 4 quarters last year. Mary Link to comment Share on other sites More sharing options...
dee45 Posted June 30, 2011 Report Share Posted June 30, 2011 Hi I have not posted in awhile either. Anthony is doing very well on Topamax 25mg twice a day and Augmentin 500mg twice a day. Pretty much tic free except for small ones that only a mom would pick up on. I guess I am wondering when do you start weaning. and if on antibiotics which one would you wean first? glad to hear everyone is doing well Deanna Link to comment Share on other sites More sharing options...
houston Posted June 30, 2011 Report Share Posted June 30, 2011 It is always so encouraging to see positive outcomes as this journey can be discouraging at times with all of the unknowns. Those of you who mentioned that your kids are on Topamax - are you seeing many side effects from the medication? Link to comment Share on other sites More sharing options...
gators Posted June 30, 2011 Report Share Posted June 30, 2011 We have not had any side effects from topamax other than dry eyes- sometimes a little sore. I researched this and apparently this can be helped by drinking more water. I am going to make sure he drinks water even when he is not thirsty. No cognitive difficulties at all- like Mary my son has been straight A's honors courses. We initially tried Tenex but that was a disaster- did nothing for the tics actually think it made it worse and the anxiety was horrible. Leslie Link to comment Share on other sites More sharing options...
dee45 Posted June 30, 2011 Report Share Posted June 30, 2011 I Have not seen any--thats a good time Deanna Link to comment Share on other sites More sharing options...
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