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Everything posted by KileyAnn

  1. My husband has Tourette's syndrome and describes something like what your pediatrician is saying about a feeling and working it out. My husband's main tic is in his nose (he blows air out of it) and he says he feels like he has to blow air out his nose because he is constantly trying to get it to feel just right. Last year we took him to a doctor who is certified in habit reversal therapy. He told my husband to do the opposite of his tic. Since his main tic is in his nose he started there and told him when he feels the urge to "get his nose just right" he needs to breath air in through his nose and out through his mouth. This is he opposite of his tic. My husband is 37 years old and has tried everything. The habit reversal therapy is the only thing that has worked long term for him and has reduced his tics by 90% and we are hoping it continues. I'm sure it's not for everyone but thought I'd share his story in case it could work for your son. my husband also tried the tmj mouthpiece. It completely cleared his tics for 2 weeks. After he went in for an adjustment 2 weeks later his tics came back. There seems to be such a connection for him with teeth and tics. His tics started when he started losing teeth as a child, he has a bad bite and tmj. He has never had braces or treatment for his tmj. I just wonder of he would have if his tics would have gotten better. anyway, I'm rambling but just wanted to respond to you and let you know that my husband has been though it and after 37 years has found something that has helped him. We also have 2 beautiful children and he is a very successful in his career. Everything will work out!!!
  2. Tics are 80% gone within 6 hours The boy that was there Monday morning came in Tuesday morning and his tics had already improved 40%
  3. His tics first appeared when he was 6. Currently he has sniffing, blowing air out of nose, head nodding, and facial grimicing.
  4. Dr. Stack did the "stick test" with my husband and the tics dimished by 50%. He sent us home with tongue blades and since my husband's had them in his tics have been dimished by 80%. When he takes them out the tics all come back within a couple minutes. So, we are going to stay in Virginia this week and get the actual mouth splint made and put in. Dr. Stack believes it will work and believe it or not, my husband and I are convinced it will as well. I'll keep you guys posted!! wish us luck There was a little boy also at Dr. Stack's office while we were there who also got the mouth splint. His mother told me that his tics have actually gotten worse with it in so they were there to get the splint adjusted. This all makes me think that there just has to be some sort of association between the jaw and tics.
  5. My husband has an appointment at 9:00 AM to see Dr. Stack. I will keep you all posted!
  6. http://www.tsa-usa.org/news/american_idol_james_durbin_0311_2.html
  7. I'm glad the PANDAs board is cheering for him! It is great awareness for TS and he seems like a great guy! So confident and a great singer! I hope he goes far in the competition. We're definitely rooting for him!
  8. Hi there! I've been watching American Idol this season and there is an extremely good singer, James Durbin, and he struggles with Tourettes Syndrome. If you are intersted in watching he will be on tonight. Hope you're all having a nice day
  9. I've heard wonderful things about Dr. Woods. Here's his website https://pantherfile.uwm.edu/dwoods/www/index.htm
  10. My husband has Tourettes and I have to say that it has shaped his whole personality in such a positive way. I truely believe that he would never be the amazing, kind-hearted, sensitive, caring person that he is if he did not have TS. He is the most handsome man, has a GREAT job, and we have 2 absolutely beautiful children together. He has everything in the world going for him. Yes, he tics, but he is such an amazing person that everyone in his life just sees past it. He had hard times when he was younger and his mom was probably feeling like most of you are on this board. With lots of love, security at home, and by finding something that he was interested in and good at (sports) he got through the tough times. He told me that when he went to college he made a life changing decision. He decided that the tics will not interfere with his life anymore. He was done giving them any attention and was going to live his life to the fullest. It worked for him! He is 33 years old and the happiest person I know! I think everything happens for a reason and I just know that he has TS because it has made him a better man. I know it seems so hard to believe righ now but I promise you all that everything will turn out okay.
  11. Dalit- I really think you are on to something. My husband has tourettes and I'm constantly trying to stay up to date on treatments in case my children begin showing signs of it. From everything I've read the structural issues seem to make so much sense. My husbands tics are completely relieved when he rests his head, and his tics started right when he lost his first tooth, he has so many neck problems, and he stretches his mouth very frequently. I've showed him the articles I've read on this and he thought it made perfect sense as well. I'm hoping they keep up the research on it. I contacted TSA to make them aware but they seemed uninterested in pursueing research in that area. Keep us posted on how your daughter is doing.
  12. I completely agree. The referrel list was no good for us as the doctors they referred us to knew nothing about Tourettes. I also inquired about the Dr. Sims mouthpiece and they wanted nothing to do with that as well. I would think that they would be interested in exploring all and any options available to help TS.
  13. My husband has been experiencing a lot of anxiety for months now. Have any of you found something that helps with this?
  14. So do you recommend not getting vaccines? Are there any studies on Vaccines and TS? I have two little ones so just curious...
  15. I think it was staged. They wanted to point out that he had tourettes so they had them ask him if he had it. I'm sure it was talked about to him before the judges even met with him. Just my opinion. It definitely could have been done in a more polite way though... No, I agree with you. Saying "elephant in the room... do you have Tourettes?" or whatever he said wasn't the most polite way to approach the subject. That being said, it's not like it's terribly common so maybe he didn't know how to approach it. I mean... there's only two other possibilities: 1) The person who has TS announces it beforehand. 2) Everyone ignores it (awkward for everyone, because then the person with TS is wondering "do they notice? Do they notice? Am I ticcing a lot? Is it distracting them?" and the other people are wondering "what is going on? Should I say anything? Why does he keep doing that? Does he know he's doing that? That's weird." and can't focus on whatever the person with TS is doing and/or talking about) So I still agree with you. "Do you have Tourettes?" is weird, but... how else was he supposed to ask it? I guess it's better than saying "why do you keep doing [insert tic] all the time?" Or maybe it's not, as at least that question could yield an answer of "oh, I have Tourettes."
  16. The problem is that every doctor we've tried to get into only see's children and adolescents with tourettes. We cannot find anyone to see an adult with tourettes. I've made numerous calls to the U of I and I finally got him into the director of neurology but he said he's not all that familiar with how to treat tourettes either! My husband has no problems with sleep. I've never met anyone that sleeps as good as him. Do you have a name of one of the doctors at the U of I that specializes in tourettes? I contacted the doctors TSA gave us about a year and a half ago and none of them would see my husband until finally the director decided to after I drove them crazy! Maybe the list has changed in the last year and a half? Thanks for your help...
  17. Wow, that is really scary! I knew Abilify had side effects and hasn't been tested well for LONG TERM side effects but now I'm scared! We live in Iowa and nobody here knows a darn thing about Tourettes. His psychiatrist flat out told him that he knows nothing about tourettes (that made us feel great) Maybe I can get him off the abilify and try some suggestions from this board. I know marajuana worked amazingly well for him when he was in college - almost completely eliminated tics. Is there a medicine that mimics what marajuana does?
  18. Hi Faith, My husband's tics were not noticeable in his early twenties. I just asked him before I replied to you how long they went away and he corrected me and said they have never gone away. They just weren't as intense or as frequent he says but they were still present. (I would have never known he had tourettes and was under the impression they were gone since they were not noticeable) As far as his vocal tics, he did have some "sniffing" while he was a child but most of his tics were motor. He has started "sniffing" again and also makes an "ugh" sound a couple of times a minute. He says that his tics started picking up after he got more responsibility. After he started his professional career, got married, bought a house (bills), and had children the stress made his tics come back more intense. He tried almost every med as a child and says the side effects were worse than the tics so he didn't stay on most of them for very long. The only thing that ever really worked for him was the nicatine patch but after being on it for so long it was not effective anymore. We have a daugher who is 3 1/2 and a son who is only 4 months old. I've never worried about them getting tourettes but now that my daughter is getting older I constantly watch her for tics. Also, the more I read I realize that they do have a good chance of inheriting it. I need to just enjoy them and not worry about it. My husband says tourettes has made him the man he is and there is absolutely NOTHING wrong with having tics. It gets much easier with age. If you have anymore questions please feel free to ask. My husband has been dealing with tourettes since he was 8 and is now 32 and has done amazingly well for himself.
  19. Thank you so much for your reply Chemar! I did buy some Epsom salt and I had him soak his feet in it tonight. Will that do any good? I've also ordered the Natural Calm so hopefully that will help a bit too. I agree that after he starts to realize how the supps work he may be more interested in it. He's just never done that approach in his 25 years of dealing with tourettes. Does your husband still show signs or is he tic free? We have two children and I worry about them developing tics. I watch them everyday to see if they're doing anything and it's starting to take a toll on me. I don't know why I'm so worried about it as my husband is the most amazing man ever - tourettes and all - but I'm just so worried about what my children will have to go through if they develop tourettes. Oh well, thanks for your help!! quote name='Chemar' date='Jan 27 2010, 08:32 PM' post='53590'] Hi and welcome both my husband and youngest son have TS meds have never really helped either and just caused side effects that were a whole lot worse than the tics! we have never used the BonTech supps but did base my son's program on the ingredients in them (see my signature link for details). A number of our members have found them very beneficial, but primarily for kids. I know some adults use them too but the dose has to be much higher and so many capsules a day needed. honestly, without proper dietary modifications, the full benefit of the supps are not going to be seen however, starting your husband on natural calm is a very good idea...maybe also see if he would be willing to start taking epsom salts baths in the evening (2 cups of the mag sulfate salts in a tub of warmest water comfortable. soak for 20 min bf bed) I think once your husband starts realizing how the supps and good diet help him he will become a voluntary participant
  20. My husband has been dealing with tourettes since he was 6 years old. Although his tics completely disappeared for years, lately he's been having vocal tics. He's currently seeing a psychologist who is perscribing him Abilify. It does not seem to be working. He's only used medicine to try and treat his tourettes but now would like to try some alternative approaches. Where do you think we should begin? I'm looking into starting him on some natural calm magnesium but then was wondering if the BonTech supplements would be better? Any suggestions? Also, he doesn't seem to be very open to changing his diet so will supplements even work? Any help would be greatly appreciated. Thank you!
  21. I know he has treated adults. I read that a 52 year old male who was a chairman for TSA was treated and tic-free afterwards. Again, I don't know the facts but that is what I read. Also from what I understand you wear the retainer for a year and then get surgery to premanently fix it?? Can anyone who has talked to Dr Sims clarify this?
  22. There was just a post from a mother of a child who Dr. Sims helped. It's from http://blogs.babycenter.com/momformation/2...food-allergies/ ryansmom Says: June 25th, 2009 at 6:24 pm Hi everyone…. Ryan has been wearing his device for 2 months now…AND LET ME TELL YOU !!!IT IS TRUELY AMAZING..our ds tics are GONE!! no vocals…no motors.. I have the whole thing on video. We had the device glued in ryan’s mouth so he wouldn’t loose it and so he can swim with it he is only 5.5 ..It took him about 2-4 days to get used to it but now it’s like he has always had it… Our life has turned around.. we are so grateful for Dr Sims…He is our angel.. if any one would like to talk with me i would be happy to share the whole story…
  23. I'm so excited that you made an appointment! Please keep us posted on how it goes. I really hope he's onto something!!
  24. I am very interested in this. Could you post what the boys parents have to say about it? I read on a different tourettes board that 2 boys were treated with this mouth piece as well. I'm so glad you're looking into this - PLEASE keep me posted!
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