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Posts posted by lulu648

  1. 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!

  2. 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.

  3. 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?

  4. 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.

  5. Hi Rachel, we are just starting the same treatment with our almost-13-year-old daughter. She fought tooth and nail the day O took her to meet the therapist, but I think she's on board now. We're scheduling apts. around school so she doesn't have to tell her friends what she's doing if she doesn't want to. Our second apt. is coming up, where I'm hoping we will get to work on her OCD. Please check back in to comment on your daughter's progression, would love to hear how it goes for you. Best of luck.


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