Mouthpieces helped my son immensely

[Bigal]

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.

[Sheila]

Hello, Bigal -- thank you for posting this, and it's wonderful that you found help with a dental appliance. I have sent you a PM and hope you could please look for it.

[Bigal]

Hi Sheila

 

I did not get your PM.

[nrr]

Hi, this post was just what I needed to read at this very moment. I have been scouring the internet all morning for success stories with mouthpieces. My 10 year old son just got a Gelb appliance yesterday and has been pretty uncomfortable and crying about it. I'm scared it won't work, I'm scared of further damaging him, I'm scared of messing up his jaw and bite and face, etc. I barely slept last night and have been just sick with worry.

 

He developed a throat clearing tic about 3 months ago, I could say that it came out of nowhere but when we really think about it there have been very slight tics every few months (only noticeable to my husband and I) since he was about 6 years old. This throat clearing tic then all of a sudden became noticeable to everybody. He had a hard time at school, soccer, with family and friends, even adults were turning to stare at him. He then started a snorting tic and a neck and back stretching tic. I took him to all sots of doctors but also started looking for alternative ways to help him and came across TMJ. I took him to a dentist in Virginia who ordered an MRI which confirmed TMJ and like I said he just got a Gelb mouthpiece for the bottom and will be getting an ALF appliance for the top. I do have to say that since starting some vitamins and especially magnesium his other tics mostly faded.

 

So again, my worry and anxiety is not only that it won't work, its the fear of possibly causing irreversible damage to his bite or jaw placement or just something going wrong in general that will cause more issues than just this relatively mild tic. I came across an article that children should not wear a mouthpiece for more than 4-6 weeks to avoid seriously damaging consequences and my child is supposed to wear it for a year! My son has such high hopes in this working and puts all his trust in me. I have to put all my trust in the doctor, but if something goes wrong, how am I going to answer to my son? These are the thoughts that keep me up at night. Success stories with this treatment is hard to find. I'm glad it worked for your son and you've given me hope. Thank you!

[Bigal]

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.

[nrr]

Hi, I actually did PM you earlier today. Please let me know if you received it. How soon did you see any improvement in your sons tic after the bottom appliance?

[boysrlove24]

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.

 

Hi! I just PM'd you...

[lulu648]

Hi, this post was just what I needed to read at this very moment. I have been scouring the internet all morning for success stories with mouthpieces. My 10 year old son just got a Gelb appliance yesterday and has been pretty uncomfortable and crying about it. I'm scared it won't work, I'm scared of further damaging him, I'm scared of messing up his jaw and bite and face, etc. I barely slept last night and have been just sick with worry.

 

He developed a throat clearing tic about 3 months ago, I could say that it came out of nowhere but when we really think about it there have been very slight tics every few months (only noticeable to my husband and I) since he was about 6 years old. This throat clearing tic then all of a sudden became noticeable to everybody. He had a hard time at school, soccer, with family and friends, even adults were turning to stare at him. He then started a snorting tic and a neck and back stretching tic. I took him to all sots of doctors but also started looking for alternative ways to help him and came across TMJ. I took him to a dentist in Virginia who ordered an MRI which confirmed TMJ and like I said he just got a Gelb mouthpiece for the bottom and will be getting an ALF appliance for the top. I do have to say that since starting some vitamins and especially magnesium his other tics mostly faded.

 

So again, my worry and anxiety is not only that it won't work, its the fear of possibly causing irreversible damage to his bite or jaw placement or just something going wrong in general that will cause more issues than just this relatively mild tic. I came across an article that children should not wear a mouthpiece for more than 4-6 weeks to avoid seriously damaging consequences and my child is supposed to wear it for a year! My son has such high hopes in this working and puts all his trust in me. I have to put all my trust in the doctor, but if something goes wrong, how am I going to answer to my son? These are the thoughts that keep me up at night. Success stories with this treatment is hard to find. I'm glad it worked for your son and you've given me hope. Thank you!

Hi there, I was wondering if you have any updates? I spoke to the same doctor in VA yesterday and we live on the west coast. To try this with this particular doctor will be a huge expense...huge. I too am searching for commentary from people on this and there was one great story but I'm looking for more... did you have any further success after a few days or weeks? Thank you for posting, it is helpful for everyone when information like this is shared.

[lulu648]

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.

Hi Bigal, I am just checking in to see if you are still having success with this? Do you know, are the appliances we could get from a local doctor the same as the ones the guys in VA and MD use? I spoke to the VA office yesterday, and it's a huge, I mean like digging into our kid's college fund huge, to work with him because we are on the west coast. I really liked him, he was very kind and highly informative, but I'm hoping we can work with someone local. Do you know of others who have had success with this?

[Bigal]

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.

[lulu648]

Thanks so much for all the information Bigal, this brings me hope. Sheila forwarded a link to me for a doctor in Seattle who does this as well, and I've contacted several people here in Portland as well, waiting to hear back, but Seattle will probably be our best bet. Did you son have the MRI? I am wondering, without the MRI, how do they know for sure if there is TMJ/TMD? I actually just heard my daughter's jaw pop yesterday, although she doesn't complain of any pain in her jaw. Occasional ear pain though, which I understand is a sign. Her tics have been really bad the last week, we're desperately trying to find anything that will help. I so appreciate your responses and the initial post, as it was the first time I had even heard of this. It makes a lot of sense to me.

[Bigal]

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.

[lulu648]

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.

Thank you again for all the helpful information, I know the story you shared will help many, many people!

[Sheila]

Some may want to check out a study going on for dental appliances. Not sure if it is only taking place in NY or other locations are being used.

 

https://www.tourette.org/blogs/research-medical/dental-device-study/

 

 

 

 

[lulu648]

Thank you Sheila!