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Everything posted by Bigal

  1. No, but I can say with confidence that they helped my son
  2. Unfortunately not. There are just a few dentists that are known for doing this: Dr demersian, Ca Dr stack/brown, VA Dr. Sims, Md dr sims was the one who really helped my son. That said, there was a local dentist who called Dr Sims to find out how to help. That local dentist did learn enough to help us. So you may be able to find a local dentist or orthodontist that would want to learn and help. Google Dr. Stack and Tourette’s to see videos about this. Alan
  3. I was definitely concerned that it would impact his molars. Specifically I was concerned that they wouldn’t touch. That didn’t happen. He did end up with space between his front top two teeth. But it went away. When he was about 13 his tics stopped. The dentists said that it was because his teeth grew into the desired position because of the mouthpieces. I used to accept that. But now I suspect that the neurotherapy was responsible. But I do know that for years the mouthpieces kept his tic in check.
  4. Hi rsw This link shows some pictures. My son had several. They were not all the same. I'd contact Dr. Anthony Sims in Columbia, MD ( (410) 872-0872) He really helped my son. I'd contact him for advice. You can can also try Dr. Jeffrey Brown (703) 821 1103. He bought Dr. Stacks practice. Dr Stack, as I understand it, developed the treatment. FWIW, I think that neurotherapy also helped my son. I really don't understand anything about what they did. But this is the place. http://bandcenterllc.com/ Best wishes Bigal
  5. Hi TT My son wore mouthpieces for 3-4 years. I think the timing though is more important than the length. He was about 14 when we realized that he no longer needed the mouthpieces. According to the local orthodontist, his jaw grew into the position that the mouthpieces were guiding it towards. Dr Sims confirmed that that happens sometimes. FWIW, my son (now 15.5 is still growing) and I hope his jaw doesn't shift. But the local orthodontist says his face is not likely to grow anymore. How old is your son? Have the mouthpieces helped much? Are you using one of the well known doctors? I should add though, that not long before we realized that my son didn't need the mouthpieces he had also been doing Neurofeedback. At the time, we thought it was perhaps making matters worse. For one thing, my son could not stop cracking his knuckles. We eventually gave up thinking that it didn't help. And my son recently said that it didn't. But looking back, I wonder. In regard to the Neurofeedback I should add that center that we used had many different treatments under the neurofeedback umbrella. I'm not even sure that they were all in fact neurofeedback. The treatment administered by Dr Davis at The BAND Center in Hadley, MA.
  6. Hi Zvendal I don't think that having a TMJ issue is a prerequisite for mouthpieces being an effect treatment. That said, my son did have a mild TMJ issue and we were completely unaware of it. When he saw a TMJ doctor the doctor put his hands on my son's jaw and when my son opened and closed his jaw there was an audible click. I'm not sure that qualifies as a TMJ issue. But if so, we were unaware of it. Maybe your child does have a TMJ issue and you don't know. But I don't know that it matters. Bigal
  7. Hi Lulu No, my son did not have an MRI. Dr. Sims did not think it was necessary. I don't think he prescribes it at all. I'm also not sure that you need to have a TMJ issue for this treatment to be effective. Best of luck with the doctor in Seattle. Again, from what I understand this treatment has helped my people. And I can say for certain that is helped my son. Feel free to get ask any more questions.
  8. Hi Lulu Yes, my son is still asymptomatic. It's been about six months since he's worn a mouthpiece. Honestly, I didn't expect he would be able to get rid of the mouthpiece. At least this young. Dr. Gary Dimerjian is the doctor in CA who does this. Also, for expenses, I think the MD doctor may be more affordable than the VA doctor. For one thing, he doesn't require an MRI.
  9. Hi NRR I'd recommend finding a local ortho that you can use for a "reality check" on what you are doing. Our family dentist recommended a local ortho that he new was intelligent, inquisitive and interested in learning something new. This ortho spent time reading about this treatment and spent time on the phone with the VA doctor and the MD Doctor. As mentioned, the MD Doctor made my son an upper mouthpiece that helped him so much. But that upper was expandable and we were told to expand it half a turn every week. We did this for a couple of months. The expnansion with each turn was imperceptible. But the local ortho had us stop because it was making spaces between his teeth. If not for the local ortho we would have gone on too long. I also had concerns about how his mouth would end up. I was told that eventually his molars would not meet and he'd need braces to correct that. And how can you eat if your molars don't meet? Well the last time we saw the MD Doctor he was pleased to announce that my sons molars didn't meet. He thought that was a good thing. I wasn't pleased to hear that. If he now had to wear braces, then he couldn't wear the mouthpieces. But we haven't gotten him braces and he eats just fine. Our local ortho says he doesn't need braces. All is good, at least now. I'm knocking on wood as I write this. FWIW, the VA and MD doctors suggested an alph. Our local ortho didn't buy into it. We haven't gotten it. Again, my son is now asymptomatic, happy and healthy. Honestly, I feel like I'm jinxing it every time I say that. Feel free to PM me if you have more questions. I'd be glad to help. Although I didn't get Sheila's PM, so if I don't reply, post on here again.
  10. My son is now 14 1/2. We started seeing eye tics when he was about 6 or 7. He was originally diagnosed with TS. That was later changed to CMTD, along with something else that they couldn't diagnose. The CMTD was getting worse as he got older. The other issue caused absolutely horrible tics starting at about the age of 11. His head would tic uncontrollably (like a baseball card in bicycle spokes ) for 45 minutes at a time. Along the way, we tried many things. This included dietary changes, fish oil, pharmaceuticals, magnesium, and essential oils. We also tried cranial sacral therapy and Brain Balance (didn't helped tics, but helped school). He got his first dental appliance about three years ago. He has had several since then. He lost one. He broke one. One broke due to his growth. I also had to dig through the trash a couple of times. After the first one broke, the doctor suggested that it was time to use braces instead. That was a terrible mistake. About six weeks after we put the braces on, the horrible head tics started. We drove down to VA to see Doctor Stack. He wasn't able to help. But Dr. Sims in Baltimore made an upper mouthpiece in addition to the lower mouthpiece. That worked. We saw a modest immediate improvement. Within three weeks the tics (and urges to tic) were practically all gone. Last summer, he started to get urges for the horrendous head tics that I described above. He could suppress them, but would get terrible headaches when he did. The urges would happen whenever he would exert himself, physically or mentally. We drove south again to see Dr. Sims. He showed us how the mouthpiece no longer fit. He made some adjustments. Sure enough, after about three weeks the urges were gone. This April, my son lost one of the mouthpieces. I wanted to take him to see Dr. Sims during the school break. But he didn't want to go. He pointed out that he'd barely been wearing them the last month or so. He said that he didn't need them anymore. So we didn't go. Instead, we went to see our local Ortho who'd been assisting with all of this. He told us that my son's jaw seems to have grown into the position that the mouthpiece was guiding it to. So that for the moment he didn't seem to need a mouthpiece. Dr. Sims said that made sense and that he might not need one at all now since his jaw is nearly done growing. Since April, he's been completely asymptomatic. The urges and tics might come back. But then again, they might not. I would implore all of you to research this approach. I remember reading (I think on this board) that this approach only helps people with TMJ issues. That may be so. But if my son had TMJ issues we were completely unaware of them, Two of the doctors that I've worked with on this spoke of success rates well over 50%. I believe them, I've corresponded with other parents who helped their children this way. I'd be glad to respond to any questions.
  11. Hi Hopeful His tics were reduced by about 80%-90% before it broke. I could easily go a week without seeing any tics. I think the more that you wear it, the more effective it is. But the effects do stick around some. So it's not like eyeglasses. He hasn't had OCD or attention issues. I was trying to figure out how to private message you to give you my phone number. I'd be happy to talk on the phone if you wished. But I couldn't figure out how to PM you. Alan
  12. Hi Stillhopeful Honestly, it's been a bit of a roller coaster ride lately. About 3 months ago, his mouthpiece broke. It broke because his jaw grew. The TMJ doctor suggested that we now get braces instead. He said, if done correctly, they'll serve the same purpose as the mouthpiece. Well after about 6 week with braces, the tics came back strong. Braces were not appropriate at that point. Apparently, because his jaw issues had not been corrected. About three weeks ago, he got two mouthpieces from Dr. Sims in Baltimore, an upper and a lower. He's wearing them both and his tics seem to be improving. But it's hard to draw any definitive conclusions. It should be noted that we recently took him to see Dr. King at the Yale Center for tics and OCD. We were informed that Wyatt did not actually have Tourette's. They changed the diagnosis to Chronic Motor Tic Syndrome. They did this because his phonic tics are rare and extremely mild. In fact, they might not even be tics at all. I hope this helps. Let me know if you have anymore questions.
  13. Mathmom, thank you very much for that input. I knew much of that, but not completely. The ortho that I am using has consulted with Dr. Stack. So I hope that he knows what he is doing. As of right now, Wyatt's tics are as bad as they've been in a long time. The ortho said that he would call Dr. Stack tomorrow. I copied your response and emailed it to the ortho. Thanks again Alan
  14. As mentioned above, braces could potentially help some people with Tourette's. I think it is most likely to help those with an overbite. My son, who is now 12 1/2 got braces about 6 weeks ago. This is after wearing a mouth appliance based on the style that Dr. Stack made. He wore the appliance for about ten months and his tics became much less frequent. My son and I were delighted with the improvement. The dentist explained from the start though that ultimately we would need to get him braces to permanently correct his overbite. About two months ago, the appliance broke for the second time. The dentist said he couldn't fix it because it broke because of changes in my son's mouth. We could either get another of just get braces. So now we have braces, with elastics. I'd say that until about 5 days ago, the reduction in tics was maintained. But they have started to come back now. Nothing terrible, but enough to be worrisome. So from what I know about all this, it appears that correcting an overbite can help tics. It did help my son. But I'm not sure if braces are as effective as the appliance for tics. I would think that it should be, but that hasn't been my experience so far.
  15. Hi Lora As I understand it, Dr. Brendan Stack is the originator of this treatment. He has many videos at his website showing patients immediately benefitting from the retainers. He is based in VA. Dr. Sims (MD) and Dr. Demerjian (CA) also use this treatment. I think they learned about it from Dr. Stack. I had emailed Dr. Stack this summer and he responded that I should contact Dr. Larry Lockerman in Worcester, MA, since I live in MA. As I learned from Dr. Lockerman,he had been visiting with Dr. Stack when Dr. Stack received my email. So my son was Dr. Lockerman's first patient (for this treatment). FWIW, my son did not get the immediate results that patients seem to get in the videos. His progress was quite gradual. It took about two months until we could say without hesitation that it helped. As an aside, my son lost the retainer about 7 weeks ago. At the time his tics were essentially gone. I could easily go a week without seeing any. We decided to wait and see if we needed to replace it. The doctor agreed that the adjustment to his jaw might stick. Also, he is getting braces as soon as his final baby tooth is out anyway. And the retainers are not cheap. I wish we hadn't waited. About 3 weeks ago we started seeing tics. We made an appointment and got a new retainer ten days ago. But his tics continued to worsen. He had a pretty bad day two days ago. Yesterday and today are progressively better. Even though I saw this treatment work for him before, I'm nervous about it now. The woman that I met on this forum, that had initially encouraged me to try it, had at first tried a local doctor. Her son apparently saw a modest benefit. They then went to Dr. Demersian and got even better results. If you are near one of the experienced doctors you'd probably want to contact one of them first. If not, it's possible that Dr. Stack could direct you to a local doctor that he has instructed. Also, if your son is ready for braces I wouldn't just get them without qualifying the orthodontist. From what Dr. Lockerman explained to me, there is more than one school of thought in the orthodonture world. He explained that we would need to find a "functional orthodontist" for my son's braces. He said that that approach is in the minority. I wish you and your son the best of luck. He certainly sounds like a strong candidate for this treatment. Feel free to post any questions or send me a message. Best Alan
  16. Hi Rowing Mom, Yeah I think the mouthpiece flipping things is a sports things. He sees lots of basketball players doing that on TV. I think that's where he got it. Became a habit, ironically perhaps a tic. I really don't know. From what I understand, orthodontics should have the same effect as the mouthpiece. So yes, definitely mention it to the orthodontist. In fact, you may want to consider this when you choose your orthodontist. I was told when I got the mouthpiece that I should look for a "functional orthodontist". As we tried to find a way to get him to keep the piece in his mouth more we went to an orthodontist that was recommended by our dentist. The orthodontist installed some "latches" that were intended to keep him from flicking it around. It didn't help. But I was very pleased. This orthodontist was very interested in the concept. He watched the videos. He spoke with Dr. Stack. He learned all that he could. He will be my son's orthodontist once he loses his last baby tooth. Best of luck Alan
  17. Well I think we can agree on my primary point. This is a treatment that parents should consider/explore. But I also want to make an additional point clear. Don't rule this treatment out because you or your child does not have TMJ issues. I did that for quite awhile. But several months back I was urged by the writer of a success story on this board to try it. I had no awareness of my son having a TMJ issue. But maybe he did. All I know is that for the last two months or so his tics are essentially gone. He is delighted about it. I am delighted about it. Alan
  18. Yes, but here's an important point. We were not aware of him having any TMJ issues. In fact, while I had seen posts about this treatment on the Forum, I ignored them because we didn't think he had any TMJ issues. My wife has TMJ issues. So we know what it is. But my son - no jaw pain, no clicking. Lo and behold, we go see this doctor and he applies lightl pressure to both sides of my son's cheeks and asks him to close his mouth. Sure enough, there was audible clicking. Also FWIW, I'm not really sure that this is actually about TMJ. My understanding from the Doctor's is that these patient's lower jaw is too long (or too short - I think too long). The mouthpiece is designed to correct that. Is that a TMJ issue? I don't know. In any event, we were not aware of my son having any TMJ issues or even a need for braces. For what it's worth, one of the two "experienced dentists" said that the treatment had helped 2/3 of the Tourette's patients that he has seen. The other said 80%. Of course, I can' vouch for those numbers. All that I know for sure is that it has helped my son a great deal. And we were not aware of any TMJ issues.
  19. First some background. My son will be 12 next week. We first noticed tics about 5 years ago. They were generally mild. But have slowly been getting worse over time. Every once in a while he gets awful tics for a week or two. When that happens it's usually a head shake tic, like he is shaking his bangs out of his eyes. The first time they got severe, I was so upset. It thought it was the new status quo. It wasn't. It only lasted about 2.5 weeks. He has had subsequent bad outbreaks, but they haven't lasted as long. We tried a few things. Guanfacine helped maybe a little. Dietary changes might have helped a bit, but I can't say for sure. Fish oil and magnesium also might have helped a bit. But despite these, things were slowly getting worse. We tried Brain Balance. It was a disappointment for us. They did help his academics a bit. But we weren't there for that. It's a lot of work and his motivation was to lose the tics. It didn't happen. I don't think that I'm supposed to name doctor's names on this forum (feel free to message me). But if you google Tourette's and TMJ or mouthpiece you will find a website for a Dentist in Virginia. He has some pretty impressive videos on his website. You see people ticking badly and then almost stop on a dime when he inserts a mouthpiece or even just tongue depressors. Apparently there is also a doctor in Maryland and one in California that have a lot of experience with this treatment. The Dentist in Virginia gave me the name of a tmj dentist in Worcester Mass, which is close to my home. That doctor didn't yet have experience, but it was agreed we would try him first. I think he charged me $1300 for the treatment, which is much less than the other doctor's charge. We got the mouthpiece in mid July. Since my son's tics are intermittent we were not able to see and real changes right away. But my son said that he felt less of an urge. Over time the tics started to slowly lessen. After about two months, it was clear that the treatment had helped quite a bit. About three weeks ago, my son lost the mouthpiece. The doctor was leaving for a 3.5 week vacation later that week. So we were initially going to rush over there to get a replacement. It was going to cost $650. My son decided not to though. It's been about three weeks now and his tics haven't worsened. It seems that the adjustment to his jaw has stuck, at least for the time being. I'd say that his tics have been reduced by about 90%. I can certainly go a week without noticing any. Previously I would see at least some tics everyday. We've been told that orthodontics is in fact the permanent solution. My son has one more baby tooth to lose and we will then get him braces. I've been told it should be about another five months. If in the meantime, if his tics get bad again, then I'll get him another mouthpiece. I should add that there were some bumps in the road. For instance, he developed an unsightly habit of flicking the mouthpiece in around and out of his mouth. His teacher mentioned that this was not endearing him to the girls in his class. He also lost it once at a restaurant and broke it once. The mouthpiece has really helped my son a lot. I really think that this is something that most of us with children with Tourette's should explore. Please post questions or message me directly. Alan
  20. Thanks Chemar. I'll google it. Alan
  21. Thanks Chemar and Crunchfly I guess I don't really understand. Chemar, it sounds like you are suggesting that this might be sort of a tic/sort of OCD. Crunchfly, your son's behavior does sound similar in that it's not tic like as I know tics. I guess my son can be experiencing something other than tics with his TS. I'm wondering if he has a whole other syndrome that I have to try to help him with. I really just wish I knew what to do. Things are getting worse and I can't seem to help him.
  22. Hi My 11 year old son with TS has been doing something new. He says it's a tic. I'm not so sure. He has been pulling his hair. We might have seen a little of this recently. But Saturday and today it really got excessive. It seems to mainly happen when he is bored. He starts by lightly pulling at or running his hands through his hair. It gradually gets worse until he is manically throwing his hands at his head and pulling (or sometimes not pulling). It looks like he is beating himself up. It got bad after several hours in the car today. We finally got him to stop when his sister gave him her phone and he played a game. That occupied his hands and distracted him. I am concerned that it might be something called "Trichotillomania‎" which is a compulsive hair pulling disorder. To my untrained, uninformed eye, this behavior doesn't seem exactly like a tic or tricho. The reason it doesn't seem like a tic to me is that it is not a repetitive motion. By that, I mean that his hands are not duplicating their movements. The motions seem random and haphazard. Any thoughts appreciated. Thanks Alan
  23. My 11.5 year old son's tics got really bad last week. Most of the time, he just has a leg/walking/hopping tic. He does it a lot but it doesn't impair his life much. And most people just think that he hops occasionally. Last Sunday, his head flick tic appeared. We hadn't seen that since last winter. It was quite bad then. I was away on business, but my wife said that it was even worse this time. His teacher said she counted 30 tics a minute. On Tuesday, we tried .25mg Clonazapam. That did not seem to have an effect. Then on Wednesday, we tried 0.5mg of Guanfacine. The head tic went away quickly. And has not returned. His leg tic is till there. We've continued to give him 0.5mg. We won't do that indefinitely. But I'm not sure when we will in fact stop. So has anybody had any bad experiences with Guanfacine? Is there anything that I should be looking out for? Any cautionary tales? Please let me know. Honestly, we've been trying various supplements (fish oil, magnesium, taurine) and eliminating sensitive foods. But none of that had any noticeable effect. The Guanfacine though, is REALLY helping. Thanks Alan
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