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Welcome to the updated and refreshed Tourette Canada Online Forum!

Tourette Canada Online Forum is a free, safe, moderated online community where registered users can exchange ideas, information and support about issues related to Tourette Syndrome. Tourette Canada has recently changed the server and refreshed the pages so returning members will notice a brighter look. Tourette Canada welcomes back two former moderators, Janet Rumsey and Cathy Wylie, to the Forum. Their knowledge and insight will serve the Tourette Forum participants with dedication and expertise.

We would like to thank the administrators and moderators who have dedicated countless hours to build and maintain the Forum. We look forward to continuing to provide a place for individuals and families affected by Tourette Syndrome and its associated disorders to get information, exchange information with others, and connect with the affiliates and support available across Canada.
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    Hi, I phoned the ped again today trying to set up an appointment soon and the secretary said that none is available for at least two months. My son will be almost finished this year of school before he gets any meds for his ADD. I cried when I hung up the phone because I was so upset. My son is really smart but that has nothing to do with his ADD, I don't mean to sound like a broken record but I feel so helpless. Steph

  • #2
    No News Yet

    Steph,

    Are you in an area where there is a TSFC support group or contact person?

    Is there a Childrens' Hopsital easily accessible where you might check into locating a support group?

    If no local support is available, please use our resources here as your sounding board. We are here for you and available to listen.

    Together we will try to help you throught this difficult time.

    Warm regards,
    Steve

    Dum spiro spero....While I breathe, I hope

    Tourette Canada Homepage
    If you enjoy the TC Forum, please consider a Tourette Canada membership
    Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

    Comment


    • #3
      No News Yet

      Hi, I live in Newfoundland and I live a long ways away from a support group and the children's hospital is an 8 hour drive away.

      I am so happy that I found this support group in order to help my son and its nice to know we are not alone.

      My son and I are both home today sick and his Tics are really bad. He barely sits down because when he stands he can do more tics with both his arms and his legs.

      Does TS help cause difficulty in going to sleep? My son is a night owl and he didn't get that from me because I love my sleep. Thanks for the support. Steph

      Comment


      • #4
        No News Yet

        Does TS help cause difficulty in going to sleep? My son is a night owl
        {Chuckle} You have described me!!!

        I have a great deal of difficulty falling asleep, whereas my wife can put her head down on the pillow and go out like a light!!

        I don;t know if it's Tourette related, although difficulty to fall asleep is generally associated with an elevated state of anxiety.

        It is believed that people with Tourette may have a higher baseline anxiety level than the general population, which might be why anxiety producing situations that are taken in stride by the general population may cause a person with Tourette to become very anxious.

        Discuss it with your son's physician, and though sleep aid medication (hypnotics) are not recommended or indicated for children, your physician may provide some non medicinal strategies for falling asleep.

        This sounds like an excellent topic for a discussion thread, and you may wish to start a discussion on "non medicinal sleep aids".

        BTW have you made contact with Janet, our Forum moderator who resides in St. Johns?
        Steve

        Dum spiro spero....While I breathe, I hope

        Tourette Canada Homepage
        If you enjoy the TC Forum, please consider a Tourette Canada membership
        Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

        Comment


        • #5
          No News Yet

          Would it be possible to call your Doctor's office back and ask who in your area provides support?

          In our area we have an after hour program through the Mental Health Department. They will even come out to your home before 10pm. I found from experience that the workers are supportive and give sound advice over the phone.
          They also report back to someone during in the morning before their shift is over. Possibly you can build a file this way to push for more help.

          As a Mom I tend to be the one that makes the wheel roll faster and that is not always a good reputation to have. :lol:

          I do understand your frustration as do so many other parents on this forum.

          I hope you continue to post and know you have support here.

          Warm regards,
          PJK

          Comment


          • #6
            No News Yet

            Hi, I know my son has a higher anxiety level than me. I always thought he was just sensitive but now I realize it is part of TS. To help him get to sleep, I do a bedtime routine but lots of time all he needs is to hear a strange sound or something similar and he is wide awake.

            I don't really feel that we need support as you suggested PJK, but thank you. We just need to see the ped in order to get meds for his ADD. Emotionally I find it hard waiting for help, however my son is ok with it. Steph

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            • #7
              No News Yet

              I'm both a night owl, AND one of those people who can put my head on my pillow and go to sleep. :\

              Comment


              • #8
                No News Yet

                I don't really feel that we need support
                A support group is an opportunity to share common experiences among a peer group. A support group provides validation, compassion and understanding along with a way to learn coping strategies from others experiencing the same challenges.

                You may or not benefit from such an experience, but from personal experience as a person with Tourette as well as a support provider I can assure you that your son can benefit from interacting with other young people with the disorder.

                Among other things, he will develop a healthy perspective of his own Tourette, and gain a better understanding he is not isolated in his disorder.

                Isolation is the most common psychological response to a disorder like Tourette, and in order to deal with the world as a successful and confident adult, a healthy broad view of Tourette Syndrome is the best strategy.

                This can be achieved by attending a local support organization or perhaps the Annual Convention of the TSFC.
                Steve

                Dum spiro spero....While I breathe, I hope

                Tourette Canada Homepage
                If you enjoy the TC Forum, please consider a Tourette Canada membership
                Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

                Comment


                • #9
                  No News Yet

                  But Steve, she suggested a mental health professional and I don't feel that we need their assistance at this point in our lives. For my son and I, we just need some help with his ADD.

                  However, when he gets the diagnosis then we will seek out a support group for the benefit of my son. I agree it will help him understand that he is not alone with TS. For right now accepting him and treating him as a normal kid with love and support is most important. Thanks, Steph

                  Comment


                  • #10
                    No News Yet

                    suggested a mental health professional
                    My eyes read faster than my mind

                    Steve
                    Steve

                    Dum spiro spero....While I breathe, I hope

                    Tourette Canada Homepage
                    If you enjoy the TC Forum, please consider a Tourette Canada membership
                    Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

                    Comment


                    • #11
                      No News Yet

                      In our situation to get help faster we went through the DMH since my son's counselor was already there & working with the school.

                      DMH provided the referral faster to the pediatric psychiatrist that assessed my son's disorders and confirmed them. She also prescribed the proper dose of med's and the proper kind.

                      So for our situation using the DMH support services provided a quick response to the referral we needed to help our son and kept everyone involved including the school on the same page.

                      At the time I did not know anything about TSFC nor did I realize we had a local chapter. Unfortunately, the DMH did not offer the info either.

                      I stumbled along the Internet and found this website. I am very thankful that I did. :D



                      This is why I suggested it since it worked for us.
                      PJK

                      Comment


                      • #12
                        No News Yet

                        Note: this reply was originally posted Jan 8, 2006 but was deleted in error . JR

                        Hi Steph

                        I have TS and prior to knowing I had TS I was described as a night owl and several in my family were too. Now with hindsight I know why.

                        My oldest son will be 14 in about two weeks and he has struggled with getting to sleep since I can remember. He was diagnosed when he was 9 and we have tried several things. Many were recommended by OT ( occupational therapy) such as deep pressure ie my son relaxed if you would hug him tight so through OT assessments we discovered he was responding to deep pressure and it was suggested that he have weighted blankets on his bed at night or a down duvet. This worked to help him settle but didn't get him to close his eyes.

                        From my experience as well as from having 4 boys who cannot seem to go to sleep on their own, we have found the use of melatonin helpful. Melatonin is naturally produced by our bodies to tell our body that when the sun sets that it must be time to relax and go to bed. My kids and I do not have enough of the melatonin... not that we were tested, just that we can go about business as usual at 2 am like we can at 2pm... we first heard about this supplement (it is not a drug or prescription) from our pediatrician who manages the majority of TS children at the Janeway and now I know it is available through places like GNC, health food stores or you can have your pharmacy bring it in for you. Please read about melatonin before you consider trying it.

                        You indicated that you are 8 hours from the children's hospital but do you ever get to St. John's? Have you contacted our local chapter? we have a toll free number and I am actively involved in this chapter. We have so much to offer. I like PJK tend to be a squeaky wheel and can get things done. I have several contacts at the Janeway if you want to partner with me to help you get what you need for you and your son.
                        Janet

                        TSFC Homepage

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