Tourette Syndrome & Tic Disorders Support Group

I hope I can help you. I was diagnosed at age 13 with tourettes, but I think I have had it all of my life. I am now 15, and to be honest it has only gotten a lot worse. I am not going to lie to you, and say everything will just be perfect, because I don't like to lie, so I'm going to just be truthful, even though it may not be as happy. With mainly every kid with tourettes, they get a lot worse through their teen years. As you get older, you will still have tics, but not as many. Every person with tourettes is like a snowflake, as I describe it. Because everyone with tourettes is very different from each other. Although some people share the same tics, everyone has "their own tics", and everyone has different degrees of it. I also have tics to twitch my neck. It must be hard as a mom to be figuring this all out, and to see your child go through something like this. But I would not try to hide my sadness from her. This way you won't have the stress of holding it in, and she will know that you are watching her, and you are understanding somewhat that it is hard for her. You must be a great mom to be traveling 4 hours to get to the neurologist. I am VERY happy to hear that her support system with family and friends is good. But especially with the school. Most schools don't take the time to try to understand tourettes. I am also happy to hear that her spinal cord surgery went well. Please if you have ANY questions about ANYTHING, please feel free to ask me. I LOVE questions, especially if they are related to tourettes. I am going to add you as a friend. I hope maybe we can chat soon, and even if you would like me to chat with Sammi, I would be happy to. I hope I have helped. *hugs*

Dem000, you are awesome. I am a mother too and although I live for today and am thankful my childrens' tics are mild now, I fear what could be in the future. Hearing from others with TS greatly helps me understand.

Jennanshe,

When you see the neurologist, he/she will have your daughter do a lot of physical movements to check for neuro. abnormalities (ex: balance on one foot, touch your nose with eyes closed, etc). Mainly, you will be asked a lot of questions, so the more information you can have written down about your daughter's time with tics the better. Here is a link to a site I created where I have listed suggestions regarding exactly what you asked here. I hope it helps.

http://ticchat.ning.com/profiles/b...

Best of luck!

Laraliz

Thank you!! Its been crazy here.. she now started ticking her entire arm and leg..right leg.. still doing the other ticking though.. I found this site and watched some interesting videos that really helped me through this. I started writing down all the info I have that I can now share with the neurologist. THAnKS : )

My son was disgnosed three years ago and I know the sadness you are talking about but I have really accepted TS as part of our lives now and the sadness does not come as often as it once did. As far as your first appointment be prepared to tell the doctor what TICs you see at home also ask her teacher's to write a letter to the doctor about TICs they see at school as well as any other problems (social, schoolastic ) that she may be having this will give the doctor a fuller veiw of your daughters challenges because if she is like my son she will display different TICs at school than at home. Also you may conscider going to the Tourette's Syndrome Assosiations web site they have a wealth of information and resources available. I hope that this helped and may God Bless.

Hello! Thanks for posting.. its been a lonely world lately with no one to talk with who understands.. We did see the Neurologist in Rochester, they were awesome. Sammi was diagnosed high Tourette's with oc and anxiety.. no adhd. They printed off so much info off of the ts web site and gave it to me.. I had lots to read and lots to think about. Sammi is getting worse with her tics but the more she does them the more I find that I am less in shock.. today was the first day we had family over since this all began and she did well.. she tried to stop them a few times and when they all left her tics came back worse.. I feel badly for her especially since some kids at school have now noticed and started talking. I have a meeting with her school in two weeks.. to add this to her already 504 plan.. I guess the biggest sadness is simply knowing that others see her as different.. and that hurts.. I am not one who cares what others think so it shocks me to say it.. I guess I am more worried about how she reacts to what others see in her.. I dont know..

You mentioned she was diagnosed with "high" Tourettes. Is that a typo? If not, what does that mean.

That is what they put down as her diagnosis.. I am not sure what that means really.. was hoping someone here would know LOL.. My husband thinks they used teh term to mean complex.. since she has many vocal and motor tics as well as ocd and anxiety-panic.
Its been nuts here.. She did good yesterday with Family visiting but then late last night at bed time the anxiety and tics came on ten fold.. its was a difficult night. I am struggling lately too.. I have Lupus and more and I am trying to be there for my daughter and myself and every once in a while I get a call from a family member or friend who is complaining about something that seems so small and I wonder to myself "Boy I wish we could trade problems for a day" .. ever have moments when your just too tired emotionally.. thats me today. It will pass though.. it normally does.