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Everything posted by mommyof2

  1. 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
  2. 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
  3. 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
  4. 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 someon
  5. 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 v
  6. 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
  7. 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!!!
  8. 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
  9. 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 wor
  10. 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
  11. 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 sum
  12. 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
  13. 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
  14. 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 e
  15. 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 tha
  16. I do the allergy shots but do not have tics. My nephew does the drops and does not have tics. My niece did the shots for about a year and now at 13 is suffering from a form of arthiritis that the specialist told her most likely erupted due to the shots. Not saying later in life,due to she has the gene for it according to test that she would not have had this problem later in life ... but the shots elevated it and brought it out early. I look at her and the pain she is in and the lost school time she has had and the sickness she goes through trying to find a medicine she can took breaks
  17. wow this sounds so much like our son, Although he is a pretty good kid.... I notice how when he gets interested in something it is all he thinks about. First it was sports...you could ask him anything about any team and he knew it...at 8 years old talking to him was like talking to an adult. He was either outside throwing the football or baseball or playing basketball.... Did great at playing baseball as a pitcher because he practiced all the time. Now he got hooked on Star wars...and that is always on his mind...from the video games, to the shows to the constant internet searches to the
  18. wow i never knew that aborted fetal cells for chicken pox vaccines.....that is terrible........... mary
  19. OMG how sad this is...this is why my kids get no vaccinations that I am not forced to get to have them in school and when they have to get them...I do one every couple weeks and won't let the doctors give them a pile of shots in one visit!!! Mary
  20. anyone see this show. http://today.msnbc.msn.com/id/26184891/vp/33853223#33853223 When i was watching it the first thing I thought of was a tic...just got over being sick and this started and they actually mentioned it on the show. Poor girl, feel so sorry for her... Mary
  21. that is wonderful to hear...light at the end of the tunnel my neice makes her confirmation this year and asked me to be her sponsor...getting good at it...i was her brothers sponsor two years ago and in two years my son will make his Mary
  22. Michael...sorry to hear that... I am sure hearing water would not relax you... The 4th track is completely silent... apparently it is to work in your subconscience..... maybe that would be helpful.. Mary
  23. Michael A few months back I ordered off ebay a subliminal tape to help reduce tics. He listens to it each night...4 tracks...3 have ocean sounds 1 no sound, each track 10 minutes. He loves them, asks for it each night. We started for a couple weeks having it on all night by repeating one track because he didn't like the quiet time on hte last track. Now we do only let it on for the one full set, unless he asks for more. Not sure if that was a help of his tics being so much less or something else, but it relaxes him and he likes it so we just do it. We recently put a hepafilter in his roo
  24. how interesting... I remember our cranial sacral lady telling my son at a visit she was learning a new technique that you tell you yourself... what would it feel like to not have to blink, ect. and it will tell your brain not to do it. I know the mind can really do alot. It helps sometimes, but did not take them away completely, of course Like I said, a very intersting concept.... Mary
  25. wow...my son has been on this since December and we haven't noticed any hair loss .... anyone else here on topamax notice it???? We just took him from 50 mg to 25 mg since Sunday..hoping we can stay at a lower dosage and the tics do not come back again. We had an increase in them at the beginning of the summer, blamed it on the generic but it took a good month or more on the brand name to get them back under control and then the vocal was still there... funny that started in june when swimming started and that noise stopped the beginning of sept with no swimming. I am anxous, well not anxio
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