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Char

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Posts posted by Char

  1. Well I got our sons hair analysis back. No metal toxins, which is good. High Calcium low Potasium were shown. Calcium and magnesium intake are not inbalance. That was the big things. I haven't called to set up the appt. but the viatamin plan is 200.00 for a 90 day program and during that time the foods that he is not to have is unbelievable...He is told not to have just about every dairy thing...milk, yogurt, all cheeses, margarine, butter, no peanut butter, cocoa, cakes, cookies, candy, soda, juices, white bread, soy flour, sugar, yeast, and the list goes on and on....... He is about wild with this. I need to talk to them and check into this more.... Also sent to doctor to see his take on it.

     

    I give him magnesium wonder if i should stop if it is what is messing up the calcium in his system????? So confusing!!!! Well just wanted to share what i found out.

     

    Mary

     

    Mary,

    Hi, how is your son doing? Your son has intolerances to all those foods, was that from doing the allergy testing? Char...

  2. crazy,

    So sorry to hear your having such a hard time. I know first hand how it feels, not knowing how to help my sons tics. But I can tell you when my sons tics start to increase, I try to clean up his diet and give him an epsom salt bath. The bath seems to help calm him down a bit. Have you ever got a IGG test done on your son? I got one done for my son and the food he's intolerant to came up. If he has these foods his tics get worse. So I try really hard to avoid them. Also you might want to get an OAT test done and see if your son has a yeast or other problems. Others on this forum have said that acupuncture has really helped their tics.I have not tried this with my son yet, but I may try in the future. I really understand how you feel. Sometimes I wonder if I am ever going to find that one thing to really help my sons tics. So I continue to try to find something to really help my son. I feel so frustrated most days. But I look at my son and how special and how much I love him. And I know I must continue to try and not give up. If you ever need to vent, give me a shout and leave me a message. It really does help me to talk with others who are going through the same things and to know I am not alone. I hope things clam down soon for your son. Char:)

  3. chap,

    Hi, you have got me thinking. My son too has tics and has had bad leg pains for along time. His leg pains wake him up in the middle of the night too. So I am wondering too if, it is common for children with Pandas to have leg pains often?? Char...

  4. mommyof2,

    Hi, there are 2 different tests you can get. An Ige(sp)? is a blood test and it tells you if you have have an reaction right away to the food. The IGG test tells if you have a food intolerance to certain foods. It shows an intolerance usually hours to days later. I had an Ige test done on my son and nothing showed up. Then I had an IGG test done on my son and it showed he had food intolerances. The funny thing is the 2 foods(dairy and eggs) where tested on the Ige and did not show up, but the IGG test showed he was intolerant too dairy and eggs. So I think doing the IGG test is a better to find out what food your body is intolerant too. Do you know if your son is having a Ige test or IGG test done? Char...

  5. PaulsMom,

     

    Hi, and welcome!! This forum is great for finding information and support from others. I have found alot of answers to my questions and lots of support from others on this forum. So you are in the right place to help you find some answers to your questions. Sorry to hear you have had such a rough time. I know how hard it can be. My son has tics and it is very hard for me and sometimes very frustrating for me and him. But I keep trying to find the right treatments for him. Do you have him on a special diet? I know you said you have not done any food testing yet. Before I decided to get the IGG test done for my son, I tried to take certain foods from his diet. But it was just to hard. So I decided to get the IGG done. The biggest food that came up in the high range was eggs. I would of never of guessed that one. So my point is maybe it worth getting done, so if one food is really a big culprit then you'll know and can start to get it out of his diet. Is he on any supplements? I know supplements, help my son and without them he seems to get worse. Keep asking lots of questions and I'm sure others on here, have great advice for you to consider. Char... :)

  6. Hi ,

     

    My son is going to be tested. I am waiting for the kit in the mail. Just wondering if, labs will do the blood work or do you have to pay them to do it? For all of you who had the test done, were your childrens positive results in the high range? Any feedback would be appreciated. Thanks Char...

  7. Hi,

    I was also wondering this. My son tics started when he was three and a half. When I took him too the doctor they said he had swollen neck glands but they never did a strep test. Now I think about this it makes me very angry!!! He seems to get strep once a year now. He is 8 years old and has tics. I have read Pandas kids handwriting gets worse and it seems my sons handwriting gets worse every year. I got a blood strep test done a couple of months ago and it was normal. So here I am trying to decide if it just tics or Pandas?? This is all so frustrating for me. I have tried to get doctors to prescribe stronger antibiotics for a longer period of time, to see if it helps but they will not. So here I am wondering....Any thoughts??? Thanks Char...

  8. ilovedogs,

     

    I find that my son has a hard time getting schoolwork done because his eyes are rolling all the time. It is hard for him to read. Also it is hard to concentrate when someone is talking to him for a longer period of time because of the eye tics. Also some sports are harder for him to play because of the eye tics. So yes I think the tics can get in the way of doing things.. Char

  9. I went back on You Tube and found a video of Dr.Stack treating a patient, who is a 22 year old male with TS. Dr.Stack explains what he is doing in the video. The patient has vocal and motor tics. He shows the patient having tics. Then when the device is put in the tics stop. Oh, but first it shows the test with the sticks put in the mouth and how to do it. It shows the man doing the test. It shows the man coming back to more times for the device to be adjusted. I wonder if Dr.Sims adjusts the device that much? If anyone wants to see it, go to you tube and go to search and type in Dr.Stack. The video is under DDowney6. I was surprised to watch it and see the device and how the device looks in the patients mouth. The device in the mans mouth does not look bulky.But Dr.Stack adjusted it to not be so bulky and he adjusted it to the height of the stick test. Very interesting video, Char...

  10. Does anyone know if Dr.Stack treats patients with tics. On you tube it shows him treating patients with a device. These patients have movement disorders. So I wonder if he too treats others with tics? The people on the videos have tic like movements and when the device is put in they stop. Dr. Stack explains what he is doing in the videos. In one video, the patient got the device in her mouth and it stop her movements. Then a few weeks later it shows her coming back to see him. Her movements were back.Then Dr.Stack adjusts the device and puts it back in her mouth and the movements stop. Does anyone have any info about Dr.Stack or looked into how he helps others? Char...

  11. Faith,

     

    I have TMJ. I have had it for many years. I have jaw pain and stiffness. It is hard to open my mouth wide and my dentist said my bite does not match up. I also have headaches and a stuffy nose all the time and sinus problems. I do not have tics but sometimes my lower eyelid on one of my eyes twitches. My dentist said that is common with TMJ. I have a splint and I wear it in my mouth at bedtime. It seems to help, but if it needs to be adjusted then it does not help. My dentist said that braces might help more to correct my bite and jaw but then again he said it may not. So I haven't gone that step yet. Advil seems to help a bit. I went to my family doctor about it and he wanted me to try celebrex. Yes I know the warning for this drug but I decided to try because I am in pain all the time. To my surprise this really help the stiffness and pain in my jaw. Also it helps my mouth open wider. So now I only take it when I can't stand the pain and stiffness and it helps. So the last dentist appointment my son had, our dentist said my sons jaw is just like mine but not as bad. So that is why I starting thinking maybe the device could help my son. The device did not help ccc son and that got me thinking. When my splint is not adjusted just right then it does not help. Maybe the same thing with Dr.Sims device, maybe it needs to be adjusted just right, to help. Just a thought maybe I'm totally wrong here, but just thinking. Hope all goes well at your appointment. Please keep us posted. Char...

  12. ccc,

     

    I know there is a picture of the device on one of the posts, but I was curious if your sons device looked the same as in the picture of the device that in the picture. Gail who I talked to, said her sons device is not noticeable, when in her sons mouth. But you said the device is bulky. So I am just wondering how bulky is the device. Does your sons device look like the one in the picture? Char...

  13. ccc,

    Sorry to hear the device did not help your son. I was really hoping it would help your son. I was hoping to hear better news from you but thanks for telling us your experience. I am here if you ever need to chat. I know how frustrating it is to try something to help my sons tics and it doesn't work. Does the device look like a regular retainer? Gail has emailed with her experience so far with her son wearing the device. She said her son had motor tics and some vocal tics and very bad OCD. Her son has been wearing it for 2 months now. He wears it all the time and takes it out to swim and brush his teeth, also to eat certain things. It was only uncomfortable for him when he lost a tooth but after his tooth grew in,it was comfortable again. As soon as the device was put in his mouth the tics stop. At first when her son would take it out, the tics would start again. But now they do not start up right away, if he takes it out. And his OCD is better too. She sounds very nice and is willing to share her story. Char...

  14. newtotics,

     

    Sorry you feel that way. Most members on this forum are trying so hard to find ways to help their children who have tics. We come to this forum to talk with others and to try to help each other. I find Dr.Sims work very interesting, if he could help my sons tics then I would pay the money and borrow if it would help my son. Please do not be offended by the questions others have, they are just trying to see if it could possibly help their child. After living with their child's tics for along time and trying lots of things and it only helps some, then you just have to keep trying and looking for different things. So that is why they are so many questions from others and me. The video's on Dr.Sims website, I have tried to look at but some writing comes up and it's nothing to do with the patients, in the picture. So if I could actually look at the videos, I would really appericate it. If I went to see Dr.Sim and he helped my son, I would be shouting it from the roof tops!! And try to get the word out, to helps others with tics. If you could share your experience, I would really appericate it!!! Char... :wacko:

  15. I was thinking after reading Gemi visit with Dr. Sims and the connection to headaches. My son complains of headaches regularly and really gets them bad on car rides to the point that he complains everytime I say we have to go away. I had TMJ when I was in high school and ohhh how I remember the headaches.... this does make me wonder if there is a connection!!!

    Mary

     

     

    Mary,

    Hi, my son complains of headaches and his jaw and neck hurts. My families dentist said he has a jaw just like mine and I have TMJ. So I am really wondering if Dr.Sim could help my son. How is your son doing? Has changing back to the regular topamax helped your son? Hope all is well..Char

  16. Hi All,

     

    My Husband and I have been really interested in this device and why it would work?? My hubby decided to email Dr. Sims and ask him a few questions. We got a respond right away from him, which is great! He seems very passionate about the work he does and seems to be generally interested in helping others. He said first off you have a consultation with him, on the first visit. He said from that, the patient and he'll know from that visit, if the appliance will help to stop or diminish the tics. He said he has never claimed this to be a cure all for someone with tics or TS. He said however, all his patients who got the appliance so far in his office, have had the same results. The tics( movements) have stopped. He also stated that he has helped children from 5 years old to patients who are 52 years old. He is very willing to describe why he thinks this appliance has helped his patients.He said you can phone him and he is very willing to talk. He said the appliance needs to be worn all day. He said the appliance should be worn for 6 to 9 months depending on the patients jaw. We asked also if the tics stop with the appliance in, then do the tics start again when the appliance is out and he said yes the tics start right away! So the appliance should be worn all the time. Another question we asked was, how long before a patient adjusts to the appliance( speech and feeling O.K. with it in the mouth). He responded by saying, usually 2 to 3 days. He said I can call him if I have any more questions and he is willing to try to help as many people as he can. Just thought I would share what I have found out. Char... :huh:

  17. bmom,

     

    Hi, on what other board where you reading from some parents, of the successes from seeing Dr. Sims? I wonder if the parents who got the device for their children and it stopped their child's tics, would come on this forum and share their experience with us. It is always great to hear success stories from others!! It really gives others and me hope!! Wouldn't it be great if this device helped with stopping tics. Please anyone on here who tries this device, keep us posted good or bad. I truely hope though, their is great success for anyone who tries this device for their tics!!! I also think Dr. Sims is awesome for taking an interest in trying to help others with tics! Char... :)

  18. ccc,

    Hi, this sounds interesting. I have a few questions. The mother you talked to who had her son treated with the device, does her son still have tics? What I mean is if her son takes the device out of his mouth, the tics come back and if it stays in his mouth the tics stay gone??? If this actually works, it would be so great. I hope this helps your child and please keep us updated!! Thanks Char...

  19. Carolyn.N

     

    Hi, Just wondering what does the Glycine actually help with? How does it help your son? How long after starting to take it, did you see it help your son? On my sons OAT test it said he has high Sulfate? Do you know how I can help out this problem and this goes along with a sluggish liver right?? Does this mean my son can not tolerate sulfates? I think I read that your son has this problem too or maybe I'm wrong and thinking of someone else!! I have read so much on here it's hard to remember sometimes who wrote what. So sorry if I'm thinking you wrote it and it was someone else. Anyhow, thanks for any feedback...

     

    rysmom58,

     

    My son has been on ts-plus now for 7 months. I think it helps him because everytime I try to cut back on the vitamins, my son gets more hyper and tics really pick up more then they usually do. My son is super skinny so, I also thought giving him vitamins will not hurt him and maybe it will help him. So yes, I do think the ts-plus helps my son, more with the hyperness then the tics though. Hope the tics clam down for your son soon... Char

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