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Thread: Way up north, no support

  1. #1

    Default Way up north, no support

    My name is Kim and my 8 yr old son Caydyn has Tourettes.

    We live in Fort Smith nt and there is no support up here, closest is edmonton im guessing......15 hrs away. Caydyn was born 2 months early and is doing pretty well health wise. We started noticing things around 4 or 5. He had to sit alone in kindergarten because of the noises he would make, mostly grunting or humming. Finally got to see a pediatrician after a year.

    She basically said "your son has tourettes" and that was it. After bugging the hospital for another year he was seen by yet another pediatrician. He has been diagnosed with tourettes adhd and odd.

    I really dont think he has adhd, he is not really having trouble inschool. He is now 8 and he has transient tics. His newest one is upsetting me a lot. Just the way his face goes and the noise he makes, it scares me.

    They dont educate his classmates about it and i am worried that he will be teased even more than he already is. He also has sleep issues and we have been trying to deal with that since he was a toddler. They really dont listen here at the hospital, i have requested a sleep study and tney did an anea test and with that concludud he was fine, just so happened to be the one nite he slept through of course.

    Is it too much to ask for some help?

    I was thinking of maybe an evaluation at the Glenrose in Edmonton, but that will probably take another 5 years.

    I feel helpless, he breaks my heart when i see him do his tics.

    Any help or tips would be awesome!!
    Last edited by Steve; February 14, 2012 at 07:28 PM. Reason: reformat

  2. #2
    Join Date
    Jul 2011
    Location
    Toronto, Ontario
    Posts
    749

    Default Re: way up north, no support:-(

    Hi Caydynsmom,

    In addition to the chapter in Edmonton, we do have some contact representatives in other areas of Alberta. Please connect with the TSFC National office and we can see if we can find support closer to you.
    You can email tsfc@tourette.ca or call 1-800-361-3120.

    We also sell an Educator's Resource Kit that might help his school, and there's our Family Handbook that might be of some help to you. Please keep reading through the Forum. There has been a recent discussion thread on sleep.
    Tina, Forum Moderator, TSFC Staff Liaison

    TSFC Homepage
    TSFC Membership

  3. #3
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,941

    Smile Re: way up north, no support:-(

    Hello Kim!

    Welcome to the Forum!

    In addition to the information and support Tina and the TSFC office resources can provide, we will be pleased to help you learn about Tourette, how it might affect Caydyn, how he, you and the family might deal with his symptoms and provide you with the support you might need throughout your journey.

    The Forum contains plenty of information and you have the benefit of being able to discuss your situation as well as gain insights from the experiences of others.

    So you are not alone, and there are ways you can help Caydyn develop into a contented young man and productive adult.

    As you have discovered, many physicians don't have enough training or clinical experience with Tourette, so you need to advocate on behalf of Caydyn.

    He is now 8 and he has transient tics. His newest one is upsetting me a lot. Just the way his face goes and the noise he makes, it scares me.
    Don't allow Caydyn's tics upset you, because as you will observe, Tourette tics tend to wax and wain over time, weeks, months and even years while the repertoire of tics might change and vary but some tics might remain longer.

    Do allow him to have a safe place at home where he can express his tics without concern for disturbing anyone. Tics are often exacerbated by stress, so if he is in a situation where he feels under pressure, it's quite possible his tic activity might increase.

    How is the rest of the family responding to Caydyn's diagnosis and tic activity? ...and most important how is Caydyn dealing with all the attention?

  4. #4
    Join Date
    Mar 2008
    Location
    Sydney, Australia
    Age
    45
    Posts
    227

    Default Re: way up north, no support:-(

    Hi Kim,

    Welcome to the forum. I know about the lack of support as here in Queensland(Australia). As for schools, our teachers are barely taught anything let alone given resources. My State won't even recognise dyslexia and tourettes amongst others as a learning disability.

    That said, this forum is the place for you to ask your questions and seek your answers. There is plenty of reading information as well.

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