kelly

Thank you to everyone. All your posts have helped me, now I am going to try and use the information to help my son. I still wish every day that a doctor is going to say, Oh, that's not ics, that's Blah blah, and we happen to have a cure for that. But I guess that's just something I have to deal with. My son's tic has ben present for a little over 1 1/2 years. It has always been the same. I read a lot of tics change, but his hasn't. They come out mostly when he is watching tv, bored or tired. If he is playing or swimming, nothing. He can sit and play a game and never do it, but then later do it 5 times in a row. His tic involves his face, clenching hands and arms and if standing, jumping. It happens all together. It's like a yawn gone bad. Has anyone had motor tics for a long time, then developed vocal and diagnosed with TS? And does this sound like a tic anyone else has had. And should I do or say anything when it is happening? I also think my son's behavior is being affected, but it's hard to tell if he's just being a brat or if it's something else. And I don't think it makes it better that I treat him like he has a fatal disease, being easier on him, which I'll only admit here. It's nice to have this place to talk and ask questions. I think it's helping me get over, "it's not fair" and "why did this happen to my family". Which I know I have to do in order to help my son and keep my family stable. I sometimes feel comsumed with my son and I know I am neglecting my daughter. It's a balance that we need to find it. Again, thank you.

I am new to all of this and am trying to find the appropriate doctor. I live in NJ, right by NYC. If anyone can make a recommendation for a doctor I would greatly appreciate it. I saw a pediatric neurologist who diagnosed my 4 year old son with chronic tic disorder. She said he had a complex tic, one she "had never seen before". Not very comforting. I have been searching the web for doctors but I know those that come recommended are best. And if there are any doctors I should avoid in my area, please let me know. Although I try to resecarch as much as I can about the subject I really have little knowledge of all different treatments/diets. Thank you for any help. Kelly

It was actually great to read your post. I could have written the same thing. My son is 4 1/2 and diagnosed with chronic tic disorder. I barely know what that means. For some reason doctors don't seem to be that concerned with this disorder, nor do they offer much support or guidance. I left the pediatric neurologist with no more knowledgable then before I went. Heck, everything she told me I already knew from the internet. They haven't dianosed it as Tourettes only because there are no vocal tics yet, yet? No mention of diet, no alternative treatment, nothing, just medication for when he gets older. Which means he will have this when he gets older? I barely got an explanation as to what a tic is and how it happens, just that it would likley not go away amd may in fact get worse in time. So after greiving for the loss of my son's "normal" life, I decided that couldn't be it. I read Shelia Rogers book and then joined this website. I read many of the posts and felt for the first time, a bit of hope. But like you, I have no idea where to start or how. I am anxious to start, to be able to do something that may be able to help him. Right now I feel so powerless everytime I see him having an "episode". So I hope we can both get some answers from your post. I am in the process of figuring out his triggers. I have eliminated TV effective today since that seems to be a big trigger. Unfortunately the others are boredom and fatigue, so I don't know how to deal with that. I too fear school beginning. He will be attending 5 full days a week, and I don't know how he will handle that. We already had some problems last year with three days. I am grateful for any information anyone may have that can help me in any way. And I don't know how evryone else deals with this, but for me, I spend a lot of moments on the brink of tears, which is not who I usually am. Please tell me it gets easier. Kelly