ccc
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Posts posted by ccc
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We have not gone back to Dr.Sims. Honestly I was not impressed with him or his office, so I think when we left I felt I would never go back to him. We called him a few month ago for a referal close by that could adjust and he never called back. That was something we did dicuss there in his office and he said he would help us find someone closer. Also knowing that my sons tics never went away and he claims that he has fixed him to about 80%. I just have a hard time trusting him or giving him any more money. Sorry for venting:( I just would prefer to see someone else if they have sucess.
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Patty,
My son has always had vocals but there was a time about a month after we got the retainer that all of his tics went down and stayed down for about 3 months. So originally we thought retainer was working. It never made tics go away but were much milder. Now I don't know. Sometimes I wonder if this retainer has moved his jaw foward but cnat move it any more. I did not have any MRI's done only the x-rays Dr.Sims took. I have thought about carnial thearpy but we are in the middle of changing insurance companies so I have to wiat.
Gemi,
I wish I would have done the MRI before. Dr. Sims preferred them but did not make us do them. Wish I could go back. So did you decide to let Dr. Stack treat your dd. I would love to hear how her treatment is going. Thanks for all the info.
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I was wondering how everything was going? Did you get the retainer from Dr. Stack? From what you wrote in your post Dr. Stack gave alot better explanation than Dr. Sims. Please keep us up to date. My son has worn the Dr. Sims retainer now for about 7 months. Right now he has really bad vocals. Making sounds every 1-2 seconds. We are having a hard time right now. Maybe worth a trip to see Dr. Stack. Hope eveything is going well for your dd.
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Thank you so much for posting that. I really needed to hear that today. It has been a rough week.
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First off all a little info. My son has TS and when we moved to the area we live in now we meet another family whos son has TS thru my sons teacher. Since then we have became really good friends and go to the same church. We have another family that has 2 boys that we hang out with also. We are all good friends. Well just over the past few weeks the other family's son who is 7 started to tic. How wierd is it that 3 families would have kids with tics. We have talked to try to figure out if it is habbit or doing it for attention but it is not. He is doing it when he is falling asleep and even if he wakes at night. Also the tic he has is the neck tic and he has never seen ours boys with TS do that. So I have tried to encourage the mom that it is probably transient and will probably go away. But thought it would not hurt to have a strep test done. So she went to see her Pedeatrican and He told her in front of her 7 year old that he did not have TS beacuse he is not saying "OH F---" but he actually said the word. Also he would not do the strep test because he said PANDAS was not real. I felt so sorry for her that she saw such an ignorant Dr. Is there anyway to report him. I just wanted advice on the Dr. and also the likely hood of 3 families that live 5 miles apart would have kids with TS. I thought this was suppose to be rare. Thanks for letting me vent.
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Thanks for posting that. I really needed to hear that today. I am always worried about what other people think. Instead I need to only worry about my ds. He tells me all the time Mom don't worry about my tics am ok!! I need to learn from my 10 year old.
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Dr. Sims will adjust the retainer but we were trying to get it done locally so we would not have to fly. It has been awhile since I have been on so I do not know what a ALF is. Is that the upper wire that Dr. Stacks puts on?
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So sorry it has been awhile since I have posted. I have not been on the board in a long time and have seen that many people have asked about my son. I honestly just had to walk away for awhile. I was becoming obsessed with finding a cure that I stopped focusing on life. So here is what has been going on. My son has woren his retainer since day one. Only to take it out to eat or this summer when we were on the lake. Did not want to take the chance of it falling in the lake. Let me start off by saying that my sons tics have NOT gone away however for about 3 months the severity has been less. I first did not think so but it took family and friends telling us thet noticed a differnce. During this time I finally let go and realized that my obsession with fixing him was only making it worse and that I need to accept him and let him be a kid. That was a big on for me. We had tried diet and supplements. We had every blood, urine, hair, stool and allergy test done. Tried all of it. My poor son lost weight because there was so little for him to eat. We as a family eat very healthy compared to most Americans. My kids think if they eat McDonlads they will end up with some horrible diease. LOL Not really but we do not eat junk and avoid all artifical and try to eat as much organic as possible. But I never noticed a change in his tics. So I decied to lessen the restrictions from the Dr. and let him have some things he showed an allergy to. Like gluten and casein etc. No change. By the way the diet and supplements were all before Dr. Sims. We stopped everything before we went to see Dr. Sims. Anyways over the last 3 months things have been great. His tics were not even an issue until last week when all of a sudden vocals like crazy. This has been going on for over a week. I can't understand why. It is hard for me to feel like it is diet because nothing has changed. Every now and then I will let him have something not healthy but in the past no change. As far as the retainer it is woren down since he got it. We noticed also that he had broken one of the prongs off. He has a bad habbit of playing with the retainer. So I wonder if the tics came back because his retainer needs adjusting or if it is just the nature of the beast. I do feel strongly in the fact that when I let go of trying to feel like I needed to fix him and just gave it to God things were better. Thats why I stayed away from the board. Not that the board is bad it has been a life saver for me and I am sure many others. I had gotten to a point that I could not stop and get off the boards so I had to walk away until I could balance life better. Hope everyone understands. I was not trying to avoid anyone. We have emailed Dr. Sims to see if he can refer someone locally to look at his retainer but have not heard back yet. Just eamiled him yesterday. I will let you know of any changes. If anyone has any question feel free to ask. Something my friend told me today that really encouraged me was she said your son is not broken so stop trying to fix him. It really made me stop and take a look at what is important. I know as a mom we just want to fix everything. We never want our children to hurt or suffer. I ask my son last night if his tics were bothering him and he said no. So I said to myslef "If they do not bother him why should they bother me." Sometime I think we as moms just need to remember that we are not alone.
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I don't know if this well help or not. But my son has had the eye tic for the past 2 weeks. His seem to be at anytime not just reading, but he has been reading more since school started. Anyway I will put eye drops in to help with the irritation that he has caused from rubbiing and rolling this eyes. Also he waers sunglasses alot because his eyes are very sensitive to light when he has eye tics. It might help since your eyes my feel my strain when reading. Sometimes the contrast of the black ink against white paper can cause a glare. Also with the sunglasses on it is harder for him to rub his eyes which I think makes it worse. I am so sorry you are going thru this.
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Just wanted to post on what the Ortho said at my sons appointment yesterday. He had called and talked with Dr. Sims the day before to discuss my sons case. He said of course he had never hard of such but was not fimilar enough with the study to say in his opinion if this would work or not. He did say that my son had a cross bite and would need and upper expander. The problem is that because of his age he would not recommend it until another year. He said he would go ahead if we wanted to but in the end we would be spending more money because it would need to be done in 2 phases opposed to 1 phase if we waited. Another thing was that once he fittef him with the expander he said the device that Dr. Sims made would not fit. Dr. Sims made told us that he could wear both at the same time. The Ortho said there was no way and when the upper teeth were expanded his bite would not fit on the device. So needless to say I am very upset. I have not talked with Dr. Sims yet to tell him this info. I am really trying to figure out what all I want to say. I feel like he should have know that the device would not fit. I am not a doctor but if you think about it it makes sense. Please pray for our family for understanding. I feel bad that I even brought this topic up if it helps no one.
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Mylittleangel,
I am so sorry to hear this. I was hoping you would get better news. It sounds like he told you the same thing he told us. We have an appointment next Wed. with an Ortho. I hope he is not just telling us this because he does not know what else to say. A part of me feels like he should give some of the money back since it did not work. It really is ridiculous what he charges for the retainer. Hang in there you are not alone. Before all of this I thought about topomax but I hate medications. I was really hoping to start this school year with no tics but that does not look like that will happen. I just have to keep trusting in God and know that he is the ultimate healer.
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Sorry you did not have a more positvie visit. I was really hoping for the best. As far as the device being bonded I am not sure how that works. My son can not eat with his in. Dr. Sims told him he would have to take it out to eat. Something you may want to ask him is to make the groves deeper. He did that for my son because he had a hard time keeping his bite in the right place. It helped him to find the groves better. I don't know if that would help but I would be leary to have it bonded this early. My son had alot of pain for the first few days and had to take it out often to get a break. I agree with you on your opinion of Dr. Sims. I feel like we are all test studies and he may be onto something but it is no where close to being perfected. Best of luck to those that are going. I will keep ya'll up to date with my son. Still no change he is ticcing away with the device but have an appointment on Wed. with an Ortho.
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I was wondering if anyone had dealt with this type of tic before. My son has a tic that sounds like a deep hic-up which I have always thought of as a vocal tic. That has been his main tic now for 4-5 months and it is several times a minute. But last night I was holding him in my lap and I could feel his stomach contracting every time he made the sound. He said it does not hurt but looks like it would. He also ends up taking in so much air that he burps alot. So I was wondering if this would be considered a motor or vocal tic. I feel like this is such a strange tic so if anyone has any advice please let me know. This board has been a life saver for me. It helps to know I am not alone.
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Dr. Sims did the full x-rays there and did not make my son have an MRI due to the fact he would not be still enough. What is so hard right now is that today I have watched my son all day and his tics are worst than when we left. I feel so frustrated!!!! My sons device looks like the one in the picture but he had to add more height to it with an acrylic mixture. When Dr.Sims first pulled the device out of the package he did not even put it in my sons mouth to try it because he said they made it to large and he went and filed it down then later said he needed more height. His is very noticeable. He looks like a vampire with it in bless his heart. I asked him tonight if he felt like it was helping any and he said maybe a little but I feel like he is just saying that because he so badly wants it to work. I feel like I gave my son false hope. He is only 9 and it is so hard for him to understand.
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My Rose,
My son also grinds his teeth and Dr. Sims did say that it played a big part in the development of the jaw. His back molars are grinded down to where he barley has any groves. When he put the sticks in they were put sideways but the retainer height is longways. Don't know if it makes a difference.
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He said 4-5 months. I was wondering how old your son is because I know you came the day after us and Dr. Sims was telling us about a boy that he saw that was 16. Did not know if that was your son or another patient.
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My sons is very bulky. His is taller in height than most kids he said but it is causing some pain with one of his bottom tooth. The Dr. said it was common at first to have some discomfort but it is so larger he can barley cover his mouth with his lips. When he does he looks like someone making a monkey face. I have been giving him motrin hopefully the pain will not last long. I never had a retainer growing up but my husband did and he said it was similar.
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On our first visit on Monday Dr. Sims told us that my sons jaw was too small and he would eventually need to have Ortho work but thought he could wait. When we tried the temporary it did not work that well because my son could only keep it in the right spot for 2-3 seconds so it was hard to know if it would work. I will say that he did not pressure us to order the device but we had just drove 11 hours and he told us that he knew it would work. So we decided we came this far to turn around and we would always wonder if we should have tried it. The position that he is trying to get is to move the jaw forward away from the nerve number 5. If you go and look on line at a diagram of cranial nerves you can see what He is talking about.
I hate that I have caused lost hope for some but I had to let everyone know the truth for us. My husband is thinking about calling Dr. Sims and asked for some of our money back since it did not work. We do have the device and don't mind paying for what he says works with the movement of the upper jaw. I feel like he is onto something but obviously has not seen enough patients to perfect it. We are like test studies and there are some kinks in his work. He said that with my son he had been thinking 1 dimensional instead he realized he needed to think 3 dimensional and thought that the upper jaw was rubbing the side of the nerve also. He had been looking at only the front of the nerve with the lower jaw. So my advice would be to not order if you do not feel 100% confidence with the temporary. I wish you all the best of luck and will be praying for success.
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No he only thought it would work if he had his upper jaw fixed. If the deceive is going to work it will work instantly.
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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.
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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.
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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.
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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.
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I did not mean that 5000.00 would cover the braces. That was only for the visit and the expense of the device. Sorry if I confused anyone. I think that some patients are still wearing the device opposed to going to stgae 2. I know the young man in the video that had the severe shoulder and neck tic is still wearing the device but is better. He committed that he was married now and has two kids. I did not ask why he did not get braces yet. I do know that it is different when they are adults tryig to go thru this because he are not growing anymore and it is harder to change the jaw at that time.
We need prayer
in Tourette Syndrome and Tics
Posted
Praying for your family right now! So sorry you all feel so bad. Hope today is a better day for you.