mommyof2

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

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

Yes my son has a large overbite...I do also. Not sure but our orthodontics is in agreeance that nerves in the jaw effect what the brain does...I am just hoping it helps!! mary

my son just started orthodontics work and he is using the herbst appliance. The reason he suggested using this was on the way to talk to them about braces my son mentioned that when he brings his lower jaw forward the urge to tic subsides....it was not something he could do long though because it hurt after a bit. We mentioned this to the dentist and Mr. Stacks device and he actually went to orthodontics school with him and he has done alot of research on TMJ...I had it when I was in high school and went to see this same orthodontics but at the time he was just learning and sent me to someone else. Our orthodontics is working up a plann to help his teeth and tics hopefully. He is a believer that the jaw can cause tics so it was a good fit for us to go to him. My son has his top braces on and the device was put on about a week ago. He is doing great. I was worried about them starting up with the braces but so far so good. What the herbst appliance does is bring the lower jaw forward and he will wear this for about a year and the jaw should grow to the correct bit. Crossing fingers Mary

My son is also on Topamax sprinkle caps...25 mg...he is doing fine with it, no side effects. He did start up in the summer from June til about the middle of August but not sure if that was due to swimming in chlorine...since on topamax he seems to do wonderfully from Sept to June and then we had a few bad summers. He just got braces put on and we changed his multivitamin to a teen boy swallowable kind since the gummies were not good for his braches and he questioned me the other day if i noticed him ticcing and I said just alittle bit not bad and he said he noticed since he started the new vitamin his head wanting to more more and wow they were full of art. colors and flavors...so we stopped. Our ortho is using a device in his mouth to see if bringing his lower jaw out will help with his tics. He was looked over the info from Dr. Stacks and is working with that...crossing our fingers that helps Mary

I understand exactly how you feel. We were determined to not medicate our ds also. When he went into 5th grade, when all the schools combined the kids, he had alot of new faces to deal with and that is when the picking started. He was ticcing for the earlier years but the kids just new=ver even commented on it...he was a well liked boy. Well after reading on here and some good results from topamax and a recommendation from our ped doctor we did it. We started him on 25 mg of sprinkle caps for about 2 weeks and then went up to 50 mg. Within about 4-6 weeks they were pretty much gone...no one could notice anything. He had ALOT of motor and just a small vocal here and there. He is now on 25 mg and doing great with no side effects. We did notice the past two summers them starting but I am convinced it is the chlorine he swims in. He will not be swimming at the beginning of next summer to see if they start. Just be sure to start slow if you use this. HTH Mary

thanks Cheri...I will see what i can find her locally. Actually right now son doing alot better...hmmmm summer ending as is swimming...coincidental...not sure!!!

Hello All someone mentioned to me about biofeedback and helping with tics...have no idea what it is, type of doctors who does it or if it is successful with tics...any help would be greatly appreciated. Thanks Mary

Hello all Well after 3 different orthodontic visits I believe we found the best fit...I am so happy!!! On our way to our first orthodontic my son says to me you know mom when I bring my jaw forward i do not feel the urge to tic ( note he was doing great for the past 9 months and is on topamax but summers he has flared up the past 3 years) but he says it does hurt and is not comfortable to do. So when we went to the first orthodontist I mentioned this to him and explained his tics...he said I never heard of such a thing but won't argue with me (he is a very nice doctor and was going to work on a treatment to bring his jaw forward but just didn't seem to be knowledgable on the tic subject) so we went to our second one and really didn't mention anything about it to him, he was more of an old school doctor wanting my son to wear a head gear and both wanted 4 teeth pulled---he really has a big overbite and a small palete and has a tooth that will not come down due to crowding and one that is coming out the front.... Anyways yesterday we were on to the third and this was the same orthodontics I went to 20+ years ago when I had TMJ and he diagnosed me but sent me elsewhere for treatment. So we went through the exam with him and he only wants 2 teeth pulled and this will give wisdom teeth room to come up and some shaving on the teeth. This is a dentist that seemed to think outside the box...anyways i asked my son if he wanted to mention the jaw movement and he said NO....well the dr asked me if there are any health issues he should know of and i said i must tell him...so we spoke of his tics...him on topamax (which his son is also on for neck injury at 200 mg) and the jaw issue and he said I can see how that would come into play with the tics. He personally knows Dr. Stack that people have talked about with the mouthguard and said they went to denstristy school together and he has been following him on his studies with TMJ and said he thinks he is on the money with his concepts. He said he feels he can find a treatment to help him with his tics and his teeth and is looking forward to the challenge. It felt so good to come out of a doctors office and not have felt like they looked at me with 4 heads like some do. My pediatrician really is great and helpful but I think he thinks i am overconcerned. And everyone I talk to including the people we get our pool chemicals from thinks i am crazy on the chlorine affecting him.... Just thought i would share my experience...anxiously awaiting the next month or so to see if son's tics subside again!! Mary

Thanks for responding...so if your son was out a day or so it didn't stop.... We use well water so I am thinking it is okay for him to be in. We will keep up with the epson salt soaks at least maybe it won't get any worse. I hate wishing summer away but I am...I know how much he loves the water mary

I have a question for anyone who found chlorine to be a trigger....When out of the pool for a day or so do the tics go away or does it take awhile. I ask this because I am assuming that chlorine is the trigger for my son....but he was not in the pool today and he still has his head nod. Yesterday he was in our pool and when he would get out I would spray him with epson salt and water and he seemed not to tic as much and says he doesn't feel like he has to but can if he wanted to. We also have him do the epson salt food soaks at night...but not sure if that is helping or not. Last two summers it seemed like this was his bad time of year...two years ago was my first notice of hit...bad...last summer we noticed it but not as bad, like this year...topamax might be helping with it. Thanks for any help!!! Mary

Thanks Abbe... bmom... I do beleive it is the topamax...I use sprinkle caps I do not know of really any side effects that he is experiencing...unless things are happening I do not know about but he is doing wonderful in school..lowest grade average is a 93...and in two classes a 96 and the clasees are hard....so he is able to concentrate and retain knowledge. We do give it to him in the evening in case it makes him tired and when he played baseball waited until after we came home....he is a pitcher and to be sure we wanted him to have all his strength. I also found that giving him B6 and Vitamin C is important with his multivitamin. Now that this has stared again with the swimming we try to have him soak in epson salt foot soak each day and I started back with the kids calm in some applesause with supper. I also try to convince him to swim in my parents pond rather than the pool...but that doesn't always work LOL although he does enjoy jumping off their bridge

Hello All Haven't been posting in awhile but come and check things out once in awhile. Son has been doing great this past year. He is on topamax 25mg at night and tics have been pretty much non exist...little things that I notice such as a nose noise but then when we had him to a native american healer he said that there was a birth defect in behind his nose most likely causing it...anyways back in Feb. we went on vacation and our son spent some time in the pool and I started to hear some noises and some minor tics happening....a few weeks later they subsided then we had swimming at school for 3 days and again things started alittle and slowly subsided. Now we are at summer and he spent 3 times in my parents pool and an eye tic and a small head nod started. The same thing happen last year and i blamed it on a good baseball hit to the head and a change to generic topamax...but now I am thinking it is chlorine because in Sept. they ceased. Can't keep him from the pool he loves it so we do the epson salt soaks and hoping it keeps him under control a bit. Not looking forward to braces getting started after hearing things on the board but he wants them so badly...his teeth are in a mess so guess we will see what happens. Read here about dong some kind of allergy treatment to stop the allergic reaction to chlorine but can't find anyone in the Pa area to do it... Well just wanted to say hi and give sons update.... Thanks for listening Mary

Hello We are using Topamax and are very happy with the results. Our son, soon to be 12 and about 65 lbs is now only taking 25mg at supoer time sprinkle caps. We use the name brand and not the generic....He was doing great on it but when they sent me the generic in about 3 weeks they started up...not sure if it is coincidence or not but not taking any chances. We at one point were using 50 mg and when things were really bad after the generic switch we did 75 mg for about a week but went back to 50 mg and finally back to 25 mg. Just be sure to start slow with low dosages. We have no side effects and for the most part is tic free, enough that i get many comments from others how well he is doing, not seeing anything. I know diet is important and a good place to start...I was not in a hurry to medicate but we finally broke down when the teasing started. We also give him a multivitamin, B6 50 mg and vitamin C... we did a hair analysis a few months back and it did show he needed B6...which i was already giving him..... I do think Vitamin C is important for him also. HTH Mary

Hello Faith I have been here off and on but haven't posted in awhile...Update my son is doing VERY Well at the time. Do you remember me having issues back at the beginning of the summer and lasted up until about Sept. Well all done. I was not sure what started it all off again since we did the movies for the first time in a LONG time, generic topamax or teeth coming out well I am thinking it was the topamax because over school break we did the movies and he lost 2 teeth in the last few weeks and still doing great. We are only giving him 25mg topamax and I have been told by a few people that observed how well he is doing. I do see tiny things here and there but nothing major. He is also fighting a cold/allergy not sure which it is but everytime he goes to my neices for a long period of time to play or overnight he seems to come home with a running nose or something, one time his eyes were pink and itchy---not pink eye just allergies in them....it usually takes him a week or so to be better and still no ticcing. I am so thankful for this board and all the helpful people and the courage to figure this out for him...hoping he grows out of it one day... he is soon turning 12 and it has been it's worse for him from 8-10.... Mary