MichaelTampa Posted July 14, 2009 Report Share Posted July 14, 2009 Faith, Wondering when your appointment is and if we'll see you there. My appointment is also on the 21st. It's at 9AM. I'm 41, will be there with my wife. She is just coming along for the ride, I am the one going for treatment. We are driving up from Tampa. Fluorescent lights cause too much of a problem for me these days that the idea of flying up was not really an option. Michael Link to comment Share on other sites More sharing options...
faith Posted July 14, 2009 Report Share Posted July 14, 2009 Michael, Our appt. is at 11, so you'll probably see is in the waiting room. I have to admit, some of my concern is the longterm effect. I know we need relief now, and I hope this is a permanent solution. but does anyone know if it is? will the alignment of the jaws be possible to fix permanently for a child? Whatever the cost is, I am willing, but the unknown does kind of scare me. Faith Link to comment Share on other sites More sharing options...
mylittleangel Posted July 14, 2009 Report Share Posted July 14, 2009 Michael,Our appt. is at 11, so you'll probably see is in the waiting room. I have to admit, some of my concern is the longterm effect. I know we need relief now, and I hope this is a permanent solution. but does anyone know if it is? will the alignment of the jaws be possible to fix permanently for a child? Whatever the cost is, I am willing, but the unknown does kind of scare me. Faith We are going on the 20th and I can't wait. I am also slightly apprehensive because of the unknown. However, my son needs relief now and nothing seems to help for very long. Hopefully this will be our solution and we will deal with the unknown when, or if, it happens. I fear the long term use of supplements on my little guys body - that unknown scares me as well. Anyway, we are flying in on Sunday and I am counting down the days. I will definitely keep you all posted. Link to comment Share on other sites More sharing options...
mylittleangel Posted July 14, 2009 Report Share Posted July 14, 2009 Michael,Our appt. is at 11, so you'll probably see is in the waiting room. I have to admit, some of my concern is the longterm effect. I know we need relief now, and I hope this is a permanent solution. but does anyone know if it is? will the alignment of the jaws be possible to fix permanently for a child? Whatever the cost is, I am willing, but the unknown does kind of scare me. Faith We are going on the 20th and I can't wait. I am also slightly apprehensive because of the unknown. However, my son needs relief now and nothing seems to help for very long. Hopefully this will be our solution and we will deal with the unknown when, or if, it happens. I fear the long term use of supplements on my little guys body - that unknown scares me as well. Anyway, we are flying in on Sunday and I am counting down the days. I will definitely keep you all posted. Link to comment Share on other sites More sharing options...
Chemar Posted July 14, 2009 Report Share Posted July 14, 2009 ((((Faith)))) and (((ALL))) who are taking this step in hope of helping your children I am *truly* hoping and praying that this will be a solution for you I also do want to clarify that all of the comments I have made here are my own, and not meant to represent ACN/Latitudes. I just help to moderate the forums here, mainly to welcome newbies and encourage oldies and also to keep watch for those ick spammers who occasionally appear. I have said right from the start on this thread that I DO believe mouthpieces/oral devices can help *some* who tic, and that I could see how they could benefit *some* tics so I dont at all dismiss the potential for this device to help possibly even many who have tics (and yes, I can see the ramifications of neural relief leading to comorbid disorder relief too!) My own son has always had tics caused by teeth stuff, so I know there is a trigger for him there, along with the many others that he has for his tics and OCD but when this was first posted and I went to look at the related research papers that had Dr Sims name on, I was concerned by some of the statements there that seemed to be kinda emphatic to me for someone to make over such a broad scope of the complexity of Tourette Syndrome here also is the abstract on PubMed http://www.ncbi.nlm.nih.gov/sites/entrez as mentioned before, I have been talking with others about this and where we can agree that cranial nerves dohave a role in TS, yet all feel very cautious about the broad claims being made, as summarized in the PubMed abstract "What has been discovered is that Tourette's syndrome is neither psychological, infectious, genetic or environmental in origin, but is what we have termed a structural-reflex disorder, and have shown through this pilot study of multiple cases how and why Tourette's and its multiple co-morbid disorders can be discontinued with a device that requires no medicines or surgery called the Neurocranio Vertical Distractor (NCVD)" the published paper is in the PDF file that CCC linked http://www.tmjstack.com/casereport.pdf. the *ONLY* things that I have been anti in all of this is that TOTAL negation of all other aspects of the complex comorbid disorders that make up TS....as emphasized in that PubMed quote: "Tourette Syndrome is neither psychological, infectious, genetic or environmental in origin, but is what we have termed a structural-reflex disorder.... can be discontinued with a device........." We know full well from just the membership here and on the PANDAS board how often we see that what works for *some* doesnt always work for others. That ranges from medications thru the supps/diet to the infectious agents like candida and strep etc and the food intolerance/allergy elimination methods, NAET, acupuncture etc etc etc. Faith put it so well in her post above. It doesnt negate other treatment's effectiveness when one has to try another way. I just have concern that this may hold out false hope for some who see that emphatic statement from Dr Sims' published work. And so I have only been cautioning on that aspect in the hope that, just as has been happening, parents will first ask questions, and when satisfied for themselves with the answers, will go into this knowingingly anyways again, it is my sincerest hope that all who are "pioneering" a new potential helpful treatment WILL find help from this. my prayers remain lifted always that people who pass through here will find, from the many treatments and triggers discussed,that specific light at the end of their tunnel. my personal feeling remains this device/treatment protocol from Dr Sims very likely can help some, but that it isnt a TS cure for ALL. And I sure hope many of those some come from here!! Link to comment Share on other sites More sharing options...
CSP Posted July 15, 2009 Report Share Posted July 15, 2009 Hi All, First I'm telling you all what my husband said, because something came up with my daughter and I had to stay home with her. Here goes... Remember that my son has braces on already so our treatment will be different. Dr. Sims said our son's 6yo molers need to be pulled up by the ortho. and this could take 10 to 12 months. So we are going to have the x-rays done soon but at a stand still for a while. For the exam my son felt no pain in the face or jaw anywhere the Dr. touched. He used 3 stick to adjust his jaw and my husband did see his mouth straighten. My son has no poping of the jaw and Dr. Sims felt only one side of his jaw had grown more then the other, but would need the x-ray to see if he is right. He is looking for a seperation between the upper and lower jaw. My son made no tics at all the 2 hours he was there and the Dr. did wish he had. My son did not feel any difference with the jaw being moved. My husband and son both felt the Dr. made a lot of sense and my son really did like him. Dr. did say he has no answer for why my son tics more when stressed and excited. Dr. Sims is not pushy at all. This is the interesting part, he explained to them about seratonin. He said there is a web at the stem of the brain that holds the seratonin and when the jaw is not right it can lower the amount of seratonin to the brain. When the jaw is lined more seratonin is let out and lowers the OCD. We will be making an appointment with his ortho. to see what she thinks and how she is willing to help. My son did say the Dr. responded with, "Holy smoke" when he saw that my son has no teeth at his age. My son has the front top 4 teeth and nothing until you get to the 6yo molers. Will let you all know more when we see where we are at after we talk to the ortho. CP Link to comment Share on other sites More sharing options...
powerofprayer Posted July 15, 2009 Report Share Posted July 15, 2009 Okay I have seen Dr. Sims today. Here is what happened. My son at the time of the visit was having eye and jaw tics. Dr. Sims first explained how he came across this knowledge and how it works. When he expalins it it makes sense. It is not new information he has come up with just understanding of the role of the cranial nerves have. The temporary device he uses is basically tongue depressers ( like doctor's use to look in your throat) and cuts them to the right size for the patient. For my son he started with two then added three in height to adjust his bite. The problam for my son was that he had to hold it still and in a specific location for it to work. Because he is 9 and trying to hold still is hard for him. As I know it would be for most TS people. When he would get it rigth his eyes would stop but only for a few seconds because he would have moved it. I was frustrated because I could not see results long enough. Dr. Sims did not push us to order the device and said we could take the temporary back to the hotel and wait until tomorrow. When I asked my son if he noticed a difference he said yes. When he had it in his mouth just right the urge to tic went away. Dr. Sims said that he can not gaurentee that all tics will go away but tries to get at least 95% of them gone if he can not get 100%. We went ahead and ordered the device and the total was around 5000.00. That did inculde everything even an adjustment in 6 to 9 months. I wish I could tell everyone that I had great news tonight but it will not be until Thursday when we get the device that I will be able to truly no if this works. I still have faith that it will and have confidence in Dr. Sims. Good luck to all those coming soon. CCC, Thanks for posting your experience. Thanks also to CSP and Gemi. CCC, i was wondering if your son had Xrays done there at Dr Simms? what about the MRI that's been mentioned before? I hope and pray Thursday brings awesome results for your son. About the second step, the braces, did someone here mention before that Dr Simm's would work with your own ortho on that? I know he doesn't participate in any insurance programs so if our own dentist/ortho can do the braces it would be FAR less costly for us. Thanks again to everyone who are being "pioneers" in this treatment. Link to comment Share on other sites More sharing options...
ccc Posted July 16, 2009 Author Report Share Posted July 16, 2009 Dr. Sims did the x-rays there. We did not have the MRI done due to the fact my sons has alot of facial tics at the time and an MRI would not turn out. He also will recommend an ortho in your area if he knows one. We live near Atlanta, GA and he said he could recommend someone. I know it is important to work with the right Ortho so they don't mess up any work that has been done by Dr. Sims. Pray for us today that everything goes well. I will be in touch later. Link to comment Share on other sites More sharing options...
powerofprayer Posted July 16, 2009 Report Share Posted July 16, 2009 DEFINITELY will be praying for success today, CCC. Thanks for keeping us all informed. Link to comment Share on other sites More sharing options...
lss Posted July 17, 2009 Report Share Posted July 17, 2009 To All, I spoke with one of the moms of a 11 yr old who was helped by Dr. Sims. Her email address is: TGLINCOLN@AOL.COM. I asked her if I could post her email on here and she said yes. She said she would be willing to talk or email anyone that would like information on this device. She said she will do anything to help others with tics. Her name is Gail and she was very friendly, and offered lots of information. One thing, they will be going on vacation this coming week, so if anyone would like to speak with her or email her, you might want to do this asap. Linda Link to comment Share on other sites More sharing options...
mylittleangel Posted July 17, 2009 Report Share Posted July 17, 2009 Dr. Sims did the x-rays there. We did not have the MRI done due to the fact my sons has alot of facial tics at the time and an MRI would not turn out. He also will recommend an ortho in your area if he knows one. We live near Atlanta, GA and he said he could recommend someone. I know it is important to work with the right Ortho so they don't mess up any work that has been done by Dr. Sims. Pray for us today that everything goes well. I will be in touch later. I am hoping everything went well. I am leaving Sunday for Columbia with my little guy and was hoping to have some success stories before I left. My son has more vocals then motor tics and right now he is definitely waxing so I hope to see an immediate difference when the device is put into his mouth. I am planning on bringing the laptop so I will keep everyone posted as best I can. I am both excited and anxious and cannot sleep. We've been at this for almost 2 years and have yet to find his triggers. We have treated for candida and clostridia, leaky gut, have restricted his diet and tried various supplements. Nothing has really worked. This is my last hope. Link to comment Share on other sites More sharing options...
ccc Posted July 18, 2009 Author Report Share Posted July 18, 2009 Sorry I am just now posting we were traveling all day. We went in Thursday afternoon to get my sons device. When my son put the device in there was no change. I was devastated!! Dr. Sims tried to say that with the device in my son ticed only 4 times a minute opposed to 10 without it. But as ya ll all no that can very at anytime. So he told us to back to the hotel and watch him and to come back Fri. morning. So we did and my husband even played catch with him outside and there was NO change. I was so upset I felt like we had been taken advantage of. We went back the next morning and Dr. Sims said that he felt the reason that it was not working was because my sons upper jaw was to small. That he needed to go to an Ortho to have an expandable retainer put in and that once his upper jaw was in the right place the device would work and his tics would stop. I had a hard time believing everything he was telling us. I felt like he was just saying what we wanted to hear. I do believe that he may have helped some people but to claim that it helps everyone with TS is wrong. He even told my husband that he has had some patients that were disappointed that it did not help as much as they would like. But when we were trying to decide on Monday whether to order the device he told us that he had gotten all of his patients to at least 90%. I also feel that he WAY over charged for the device. As my husband says it is just a glorified retainer. I feel that he is taken advantage of people that are willing to try anything to help. And I would not mind paying that much for a device but it truly is like a retainer. I don't no many Ortho's that charge that much for a retainer. At this time I can not say that I would recommend him to anyone. I may totally change my mind in 4-5 months after we see an Orhto for the upper retainer. WE are going ahead with his advice because at this point we feel we have nothing to lose. We did know before going to see Dr. Sims that my son would need braces so hopefully it will not be in vane because it will help to straighten his teeth even if it does not help with tics. I truly hope it works for those going next week. I hate to write this. I know so many had hope and I hate to let anyone down. I just wanted to be honest and let you guys know. If ya'll have any questions please do not hesitate to ask. I hope those that go can offer hope to others and myself that it may work. Link to comment Share on other sites More sharing options...
lss Posted July 18, 2009 Report Share Posted July 18, 2009 Sorry I am just now posting we were traveling all day. We went in Thursday afternoon to get my sons device. When my son put the device in there was no change. I was devastated!! Dr. Sims tried to say that with the device in my son ticed only 4 times a minute opposed to 10 without it. But as ya ll all no that can very at anytime. So he told us to back to the hotel and watch him and to come back Fri. morning. So we did and my husband even played catch with him outside and there was NO change. I was so upset I felt like we had been taken advantage of. We went back the next morning and Dr. Sims said that he felt the reason that it was not working was because my sons upper jaw was to small. That he needed to go to an Ortho to have an expandable retainer put in and that once his upper jaw was in the right place the device would work and his tics would stop. I had a hard time believing everything he was telling us. I felt like he was just saying what we wanted to hear. I do believe that he may have helped some people but to claim that it helps everyone with TS is wrong. He even told my husband that he has had some patients that were disappointed that it did not help as much as they would like. But when we were trying to decide on Monday whether to order the device he told us that he had gotten all of his patients to at least 90%. I also feel that he WAY over charged for the device. As my husband says it is just a glorified retainer. I feel that he is taken advantage of people that are willing to try anything to help. And I would not mind paying that much for a device but it truly is like a retainer. I don't no many Ortho's that charge that much for a retainer. At this time I can not say that I would recommend him to anyone. I may totally change my mind in 4-5 months after we see an Orhto for the upper retainer. WE are going ahead with his advice because at this point we feel we have nothing to lose. We did know before going to see Dr. Sims that my son would need braces so hopefully it will not be in vane because it will help to straighten his teeth even if it does not help with tics. I truly hope it works for those going next week. I hate to write this. I know so many had hope and I hate to let anyone down. I just wanted to be honest and let you guys know. If ya'll have any questions please do not hesitate to ask. I hope those that go can offer hope to others and myself that it may work. So sorry to hear this. Can you tell me if your son's tics are motor or vocal or both. I know we were all hoping to hear better news as I'm sure you were. Linda Link to comment Share on other sites More sharing options...
ccc Posted July 18, 2009 Author Report Share Posted July 18, 2009 He had both but mostly vocal. At the time he was doing eye blinks with a roll and deep hic-up. They were so bad on Wednesday that he threw-up. I hurt so bad for him because he doesn't understand why it did not work. Link to comment Share on other sites More sharing options...
ccc Posted July 18, 2009 Author Report Share Posted July 18, 2009 One thing I wanted to mention is for those who want to try this at home. Basically Dr. Sims took tongue depressor's and cut them to the width that would fit in my sons mouth. He started with 2 and added 3 in height. He said most patients that was the right height but some needed up to 8. My son used 4. What you are looking for is to place it so that there bit is correct meaning that your upper teeth are aligned with your bottom teeth. He would put his finger up against my sons teeth and told him to move his lower jaw forward to where both upper and lower jaw were touching his finger. This would place your lower jaw out to relieve pressure on the nerve that was causing the tics. It is worth I try for those thinking of going. Link to comment Share on other sites More sharing options...
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