love_nfp

Michael & Beth, Thanks for your honesty. "Agonize" is truly what I'm doing......I'm am going to continue to follow Michael and you. Maybe I'll go there this summer and make a long vacation of it. Faith, stacking tongue depressors is how Dr. Stack and Dr. Sims tell which height is right to stop tics. There must be more to it, like maybe thrusting the bottom jaw forward at the same time????? Thanks, Michele

Hi Beth, So, your son has already had braces, he'll wear the nighttime appliance forever, and the daytime appliance for a year. Did Dr. Garcia say what happens after a year? You are so blessed to be 1 hour away! We are @12 hours from Tampa. My14 year old son has the same exact type of tics as yours. If you were me, would you travel that far? Do you happen to know how many adjustments have to be made after the delivery of the appliance? Please keep us upadated. Thanks, love_nfp

Hi, just wanted to give everyone an update. My local orthodontist is/was willing to work with my son. He contacted Dr. Stack and spoke with him. Dr. Stack sent him a DVD which is a longer version of the guy on youtube. Apparently, youtube videos have a limit of 10 minutes. I haven't watched the whole DVD yet.... Anyway, we made various tongue depressors of different heights and held them together with the little rubberbands that are used for braces. I stacked them 3, 4, 5, and 6 high and cut them to fit in my son's mouth. I am very disappointed, it did nothing. My son said it made it worse. ..... I'm glad I didn't spend thousands of dollars to find this out, but maybe we are doing something wrong. Should we give up? Any suggestions?

Use extra virgin coconut oil. Make sure it is non-hydrogenated. The hydrogenated coconut oil is bad. EVCO is actually a healthy saturated fat. Organic is preferable. You can google "coconut oil" and "health benefits" to find out more.

I'm interested in the leg length notion. I took my son to a chiropractor for 1.5 years. (Well, most of the time I had to drag him there.) He put his feet together and checked to see if they were even like you said. He did the same adjustment time after time. I also bought "foot levelers" but they were not $22 - more like $200. They were like a custom orthotic with the spine in mind. To be honest, I don't think any of it did any good although I don't regret trying that route. We quit going when the chiropractor started something new. Instead of a manual adjustment, he used an instrument and tapped the spine and skull in certain spots and "asked my son's body" questions. At first I thought that he was using figurative speech. After two visits, I realized that he was literally asking my son's body questions telepathically and supposedly getting "yes or no answers" from my son's occipital bone in his skull. For example, "Is something wrong with C5?" or "Does your body need more water?" "8 cups? 9 cups?"..... If the bone dropped when he asked the question that meant an either yes or no answer to the question. Sorry, but this seemed hokey to me. Also, my son had a scary reaction from the "adjustment." He was weak, hot and nauseated. We were told that this was part of the healing process and that trapped energies from old injuries were resurfacing or "uncoiling." He said that the body has an innate wisdom and can tell him where and what healing needs to take place. None of this squared with our religious beliefs, so we never returned. My son didn't want to go back anyway. I want to believe that the chiropractor wasn't ripping me off. He seemed like he genuinely wanted to help us. I hope that he was simply misguided.

Here is the Total Transformation website: http://www.thetotaltransformation.com/ My friend bought the program and she loaned me one of the cd's.

Ditto on the Epsom salt baths, B6 and magnesium. One thing that has been a lifesaver for us has been sports. He can release some tension and sometimes the tics are easily disguised while playing sports. It also gives him something to look forward to. My son is the type of kid who has to have the carrot in front of him. The only other thing that I can offer is that you're not alone. My son can be so terribly mean to his siblings. The nasty, disrespectful behaviour especially towards me is hard to live with. One thing that has helped was listening to one of the Total Transformation CD's. Without realizing it, things here got to where my son was "running the show". Everything revolved around him, what kind of mood he was in (usually grumpy), and tiptoeing around so as not to set off an explosion with him. He was in control and I didn't even realize it. I was afraid of him, afraid to correct him. He is better when I take command and control because it is actually scary for a kid who is out of control to know his parents aren't in control either. They actually want you to be in control. The one important thing I remember from the cd is when they start to get ugly and try to pick a fight, you "disconnect". You say in a frank businesslike tone, " Don't talk to me like that. I don't like it." and then you walk away and don't respond to their continued efforts to pull you into an argument. I couldn't believe it. It actually worked! You are in control because you are refusing to allow the situation to escalate and you end it! Once he called me on my cell phone to complain and pester me to death that there wasn't any barbecue sauce, why didn't I get bbq sauce at the store, "you always forget stuff", "you know I can't eat this without bbq sauce," you get the picture.... I said over the phone in a calm voice, "There is no BBQ sauce. I have to go now. Bye,bye." and I hung up. I thought for sure he was going to keep calling me and calling me, but he didn't! I assumed control and he perceived me as being in control. Hope this helps...the main thing is you are not alone. Also, his age may be a factor. I've read that ages 10-12 is generally a bad time. I can say that things were the worst so far when my son was 11. It's not a picnic now, but it is not as bad as when he was 11. Supposedly, after puberty things get better. My brother has TS also and he is 31 now. He acted the same way as my son does at that age. I remember those nasty, irritable moods.... That did get better.

Michael, What was the reason for Dr. Sims to learn more about this specific topic? Beth, So, do you recommend the braces first and then a visit to Dr. Garcia or Dr. Sims? Would you please ask Dr. Garcia on Thursday if your son will need braces again after wearing the daytime appliance for some time? I tried the popsicle sticks at home. My 14 y/o son kept spitting them out saying that it wasn't doing anything and looking at me like I was crazy (which, sadly, is his usual response to any interaction with me). Most of the time his face looks "pained" or "stressed". I'm wondering if this could be relieved by the appliance??? His persistent irritability is very, very difficult to live with - even more so than the tics. Anyone else experience this? I'm checking this thread twice a day. Please keep us posted.... love_nfp

Beth, Did he say anything about your son eventually needing braces?

I found this posted here by Gemi on July 1, 2009 that might help explain a little more: "After that he explained the steps of the treatment. 1. He puts the device for 6-9 month. He wants it to be worn 24/7. The less you wear it the more time you need for the muscled and jaws to be brought to the right position. Some people need the lower jaw device, some upper jaw, and some upper and lower jaws devices. 2 By the time the device is out, her muscles in the mouth will be trained to be put in a different position. Actually, he told, that if he will be performing the step # 2 (braises), he will cut the device gradually from the back and will put the braces along the way with the rubber bands in order to bring the jaws and teeth in the right alignment. As I understood, he will start doing braces when the tics are gone without the mouth piece being in. Guys if your going to go to the appointments, please clarify that he will start doing braces when the tics are not present even without mouth piece in. Braces may take 24-36 months. 3 Retainer to support the ortho work." So, that would make more sense to me if he cuts the device gradually from the back and puts braces along the way to bring the jaws and teeth in the right alignment.

Dr. Sims responded to my email. I have to say that I'm impressed that he actually responds to my emails and does so timely. I sent this Friday and received a response today, Sunday. He definitely has patience because this is the third time I've emailed him. Here was my question to Dr. Sims: "After wearing the appliance for 6 months to a year, one gets braces to bring the top and bottom teeth back together again, correct? I do not have a dental/medical background, so please bear with me. How is it that after the braces, the teeth would not be in the same position as when we started?" Here is his response: "Good question. After wearing the appliance the posterior teeth will not be in contact with one another. The bite must be opened to achieve the proper functional position to discontinue the tics. As it stands now the teeth are in the right position but the jaws are not therefore the tics are present. When you change the jaws the teeth position must change. Putting the jaws into proper position will not allow the teeth to be. Thus orthodontics is necessary to bring the teeth into the right alignment with the jaws afterwards. An orthodontists can be used in your area to complete this treatment." My next step is to see an orthodontist. We have to see one anyway. I'm going to bring the journal article and get his opinion and then make a decision whether to proceed to Maryland or not. I have another son with Crohn's disease. Two pediatric gastroenterologists have told me that "diet has nothing to do with it." Desperate because the medication he takes hasn't given the results it should, I did some research and put my son on the Specific Carbohydrate Diet at the beginning June of this year. His lab work recently came back normal for the first time in 4 years! My point is saying this is that just because some doctors say "that won't work" or "it doesn't make sense to me" doesn't necessarily mean that it won't work. So, now I am back to considering the trip to Maryland again.

Oh, I'm so confused!! ["As far as Dr. Sims' device goes, he said it didn't make sense to him to create a posterior gap and then have braces to correct that gap. He said that you would be right back where you started. If anyone has another understanding of this, please write and tell us all."] Someone correct me if I'm misunderstanding this, but I thought Dr. Sims' device works this way: the appliance keeps the mouth propped open and the back teeth, of course, don't make contact (posterior gap). After wearing it for 6 months to a year, the muscles are trained to keep it in that position, and at that point even when you are not wearing the appliance, the back teeth will no longer make contact (posterior gap). So then you get braces to keep the jaw in that position and bring the top and bottom teeth back together again. I thought this was pretty straightforward, but this is where my dentist said you would be right back where you started. I'm stuck and confused here. Is it possible, or not, to keep the jaw in the position where one is tic-free and have the teeth properly aligned? I guess it is according to Dr. Sims, however, the mom of the 10 year old on the video told me that no one Dr. Sims has treated has gotten that far yet...... I will email Dr. Sims to get a clarification. ["A couple things I was hoping you could clarify. When you said your sons top and bottom teeth don't touch in the front ... do you mean, there is a gap in the top-bottom direction, meaning he could not rip a piece of bread with front teeth because the bread would slip right on through? (I think that would be called an underbite, and I'm saying that because mine cross way too much and they are calling that an overbite.) Or, do you mean that, when the top and bottom teeth do come together or at least cross, the bottom teeth are way behind the top teeth, so they don't come close to touching?"] It's more like the bottom teeth are way behind the top teeth, so they don't come close to touching. When my son's mouth is closed, the top and bottom back teeth make contact like they are supposed to. The top teeth are in front of the bottom teeth like they are supposed to be, but there is a gap. You could push a stick of gum through the space when his mouth is closed. Does that make sense? There is supposed to be even pressure all around when he bites down. Since the front teeth don't meet, more pressure is exerted on the back teeth, causing overactivity of the jaw muscles and, hence, his "ripped" jaw. Last night I was looking at my daughter's teeth and she too has an overbite that is worse than my son's! And she does not have TS! I am very confused and exhausted from all of the time spent thinking and surfing the net about this.... [name=MichaelTampa' date='Sep 17 2009, 04:18 PM' post='38397] love_nfp, Perhaps the braces first approach will be the simplest. It is hard to criticize the decision, given, when you have the jaw still growing, you don't know how that will end up, so, fix the teeth and see where you are seems reasonable enough, particularly if you are not desperate for immediate relief. One thing, though, just to keep in mind, if your soon is still needing a jaw realignment after that, you could end up going through the braces situation twice. For example, if you need the jaw moved down, the bottom teeth may need to be pulled up away from the jaw as a result. A couple things I was hoping you could clarify. When you said your sons top and bottom teeth don't touch in the front ... do you mean, there is a gap in the top-bottom direction, meaning he could not rip a piece of bread with front teeth because the bread would slip right on through? (I think that would be called an underbite, and I'm saying that because mine cross way too much and they are calling that an overbite.) Or, do you mean that, when the top and bottom teeth do come together or at least cross, the bottom teeth are way behind the top teeth, so they don't come close to touching? My other question relates to this paragraph: "As far as Dr. Sims' device goes, he said it didn't make sense to him to create a posterior gap and then have braces to correct that gap. He said that you would be right back where you started. If anyone has another understanding of this, please write and tell us all." I do not know what a "posterior gap" is that you are referring to. If you could try to explain, that would be great. Thinking about the Dr. Sims device, could you mean that the idea of moving the jaw down only to move the teeth back up to compensate doesn't make sense to the TMJ doctor you saw? My understanding of the benefit of doing that is the jaw movement is what is pinching the nerves, and so moving the teeth back up would not cause one to lose the benefit of adjusting the jaw down. Michael

Today, we saw a local TMJ specialist to get his opinion before travelling to Maryland (Dr. Sims/Stack) or Florida (Dr. Garcia). I highly recommend doing this before travelling. Before today's appointment, I provided him with a letter describing my son's condition, Dr. Sims' journal article, and the Youtube video links. He read the article, watched the videos, and spent a whopping 45 minutes on the phone with me - no charge. In my 14 year old son's case, his jaw muscles are very bulky and tight. (My son said, "So, I'm ripped?" ha,ha) He does have a space between his upper and lower teeth in the front. This puts more pressure on the back teeth when the upper and lower teeth don't touch in the front (they're supposed to touch). This puts extra stress and activity on the back jaw muscles. He does clench his teeth which also puts more stress on the muscles. His crowded teeth at the bottom will only get worse over time and cause more problems in someone who clenches. The doctor put a tongue depressor between the upper and lower teeth, but it was just to demonstrate that the stick was not in a straight line, it was cockeyed to the right. Incidentally, he had more pain on the right side when pressure points were touched. He recommended that my son get braces first, then a splint. Yes, that's right. It's backwards from what we've been hearing! He agreed about giving the trigeminal system a break, but only after the teeth are straightened and the bite is correct. He surmised that once everything is corrected we may see some relief from the TS just from having braces. He said that the actual wearing of braces may even temporarily serve as a "distraction" to the nervous system and improve symptoms. He said he would make a splint after the braces are off. He agreed that the trigeminal system would benefit from a splint, but only after the bite is corrected. He said the splint could be worn any time, day or night or both. As far as Dr. Sims' device goes, he said it didn't make sense to him to create a posterior gap and then have braces to correct that gap. He said that you would be right back where you started. If anyone has another understanding of this, please write and tell us all. The best part was that the dentist today did not charge me!!! I couldn't believe it! He spent a whole hour with us! This speaks volumes to me. It still bothers me somewhat that Drs. Sims, Stack and Garcia are charging from $3,000-$5,000 for what someone here earlier described as a glorified retainer that may or may not work. Also, even though the doctor we saw today recommended braces, he does not do orthodontics so he had nothing to gain from recommending braces. As an aside, I have had great success thinking outside the box in other areas of my health and my children's health where doctors have said, "Oh, that won't work"..."That doesn't make sense"... or "I don't have any studies on that..." I have also had near tragedy following doctors' advice, for example, when my son had a bad reaction to Geodon for TS and talked of killing himself at age 11. So, just because the dentist I saw today is not impressed with the science behind Dr. Sims' paper or the appliance that Dr. Garcia makes, doesn't mean that it's not worth pursuing. However, considering the cost, travel, and uncertainty whether it will work, and the fact that we will have to do braces anyway, I think I will go with what the dentist today said. Braces first, then splint. Please share your thoughts!

Hi Michael, I just spoke with Dr. Garcia. He told me the same things that he told you. Dr. Garcia had a dental assistant with a child with TS. She commented that his symptoms were worse when chewing. An examination revealed that his jaw was not aligned properly. The appliance relieved the TS symptoms. So it was rather by accident that this was discovered. He said a lot of TS patients have a deep bite and/or a deviated mandible. Better position of the mandible (meaning where one is tic free) is held by an appliance. A daytime appliance is worn that one can chew with. The appliance covers the anterior teeth so there is no possibility that anterior teeth will super erupt unlike Dr. Sims' appliance, although Dr. Sims told me that that was never a problem. The nighttime appliance does not allow one to clench at all. By doing this, there is complete rest of the trigeminal system at night. The day time appliance is worn for a limited time (he did not say). The nighttime appliance would be worn for the rest of one's life. (This is not a big deal since I, myself, wear a night splint for nighttime teeth clenching.) He did not say aything about braces except that if my son's jaw is misaligned, then the teeth might have to be moved to support the jaw. I asked about the possibility of the daytime appliance making one talk funny or drooling since I am dealing with a sometimes difficult teenager. He said it takes a few days to get used to talking with it, but he has made literally thousands of these for regular TMJ patients and no one has problems with them. The salivary glands may overproduce until they get used to the splint being in the mouth but it is only temporary. Do you mind me asking why you initially went to Dr. Sims instead of Dr. Garcia? Who do you recommend now that you've seen both? I am leaning toward Dr. Garcia because he has the two appliances and they won't affect the anterior teeth. I have an appointment on Thursday with a local TMJ dentist to evaluate my son for TMJ problems. Will let everyone know what he says. Thanks, love_nfp

Please, please, please! Someone please update us! Dalit, did you go to Maryland on the 24th? CCC and mylittleangel, how are things? Even if it's disappointing news, please let us know......I am almost ready to book a flight to Maryland.