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My son has really benefitted from a TMJ mouthpiece . .


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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

 

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Glad it has helped your son :)

 

We have had others here who tried it (a number of threads in the archives!) but most found it was of no help, and in one case, it even proved to be a hindrance if I recall correctly....

so the important thing to remember is that this device appears to be helpful only for those who are having tics due to TMJ problems. It is not a "cure all" for TS and not everyone dx with TS has TMJ problems.

 

That said, of course it is great news to hear that your son has benefited so much from this Al and hopefully anyone else who is dealing with tics related to TMJ issues will follow through and find relief too!

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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.

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Hi Al

well again...pursuing areas that may hold helpful results is always worthwhile....whether this is a TMJ problem or some other issue related to the jaw...if it helps...that is what matters.

 

It is that "hype" re 80% or "2/3" of ALL TS patients being "cured" by this that has always troubled me a bit....as indicated by the members reporting back here, most were NOT helped by it so that in itself denies that statistic that the dentists involved quote.

Much better I think that they would just hold out a hope that *perhaps* this can help.

 

 

It should also be noted that some people with TS tic *more* with orthodontic procedures ie it can be a trigger for some, rather than a help.

It is like that with most treatments. We simply cannot say *everyone* who tics is definitely going to be helped by any one specific treatment protocol...

as all of on this journey have found, there are as many causes as there are treatments, and not everyone who tics has TS

 

 

Again, I am so glad it has helped your son :) and thank you for sharing as even if it helps just one other person, it is invaluable!

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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

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Wonderful for your son! Great that you have found an answer to your son's ticcing, and that the results appear to be lasting, even without the device.

 

I had to laugh when you mentioned him flipping the mouthpiece around and out of his mouth. Sounds like the guys on DS17's hockey team with their mouth guards. Must be a guy thing, although I don't watch much girl's hockey to see if they do it as well.

 

DD's ticcing seems to be under control now (her's was related to toxin buildup from bacterial die-off), but is stil suggestible. She will be starting ortho treatment within the next couple of months, so we will see if there is any decrease in suggestibility. I had been hesitant to start for fear the appliances will stimulate mouth tics. I haven't asked the ortho about any possible TMJ involvement. I will make a note to do so.

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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

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  • 3 weeks later...

That is great news Alan!

 

Thanks for sharing! So great to hear of a treatment with positive results. Often once a person finds some success in their treatment I think they end up not posting anymore, so we don't always get to hear of the 'success stories' and that is why statistically it could look like a treatment hasn't worked for a lot of people. This is great to have another avenue to explore.

 

Hope everything continues positively!

Lisa

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I just read your post and I am going to explore this option with my son's dentist and orthodontist. Interestingly enough, his tic started at 8 years old when he had a jaw expander placed in his mouth. The tics got significantly better once the device was removed. We know he will need braces as his mouth is still too small for his adult teeth to come in. His tics kicked up just this September (he just turned 11 last week). After I read this post I asked my son if his jaw clicks. He responded immediately "yes," but that he never mentioned it because he just thought this was normal. My question to you is this: Is there a specific dentist or orthodontist that makes these mouth pieces? How would I go about researching one in my area if my son's current dentist and orthodontist are not familiar with this procedure? This may or may not work for my son, but it is too coincidental that we always knew that the tic began along with dental issues. Any advice with how to find a dental professional would be appreciated. Thank you so much for your post. Glad this device worked for your son.

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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

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  • 6 months later...

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.

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Thanks for the reply BigAl. I have a lot of questions... :)

 

Up to the point that the mouthpiece broke was your son ticing at all? Did he have vocal tics that diminished over time? My son has vocal tics and cursing so I am hoping it can help with that Do you see this as a "cure" or more like eyeglasses (when they are off you can not see well)? Did it help with any other symtpoms like OCD or attention issues?

 

I am glad it is helping your son. Too bad that it broke but hopefully you are on the right track now. My son needs braces and I am hesitant to get them at this point. I sent Dr. Stacks an email but have not heard back. Maybe I will email Dr Sims as well. Thank you very much.

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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

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Hi --

 

I sent you a PM with our phone number. Please call us when you have a chance. Just wondering what you thought of the Dr. in VA and the Dr in MA (near you). The Dr. In VA wants a lot of money and I am worried about taking a chance. I am going to contact the dr in MD as well. There is a study being done in NYC so I am looking into that too.

 

Also, wondering did your son's diagnosis change due to the use of the mouthguard for ex, did it lessen the vocal tics?

 

Thanks again!

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