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Thread: Tourettes support group...Nova Scotia???

  1. #1

    Default Tourettes support group...Nova Scotia???

    Hi My name is Trina and my 11 yr. old son has just been diagnosed with Tourettes. To say the least...even though I am a nurse I was shocked and scared. I woulld like to hear from other parents in N.S. with children with Tourettes. Please help!!

  2. #2
    Join Date
    Jun 2005
    Location
    St. John's NL
    Posts
    1,147

    Default Tourettes support group...Nova Scotia???

    Hi Trina

    I am so glad you found our forum. There are many great members who frequent this site and will share their stories and strategies for coping.

    First of all be assured that your reaction is very normal to such a diagnosis... you are a Mom first so this type of news is devastating to many parents. I reacted the same way when my oldest was diagnosed. Being a nurse or a doctor or working in any field does not prepare any of us for the feelings we have when we are told our darling baby is not normal. The bravest thing you have done is log in and post your message. It often takes parents months to reach out and ask for support... Well Done!

    The TSFC has many chapters throughout Canada but to date there is not yet a chapter in Halifax. There is however a strong support group there and I would suggest you contact our national office and speak to Ingrid or Rosie at this toll free number: 1-800-361-3120 and they will get you connected with a contact rep in your area.

    Do you have information on TS? I had very little when we got the diagnosis and only knew what the media sensationalized and that can truly be scary because the reality is that TS is not that bad.

    Here is a great link to info that can be printed and read. What questions do you find yourself asking?
    Janet, mom of 4

    TSFC Homepage


    "Intelligence is always increasing; accommodation allows your intelligence to do what it has always done." Cassie Green, Washington College

  3. #3

    Default Tourettes support group...Nova Scotia???

    Hi Trina and Jeff,

    Welcome to the TSFC forum and we are happy that you found us.

    There are support groups across Canada for resources in your community.

    This is a time of adjustment for you as a parent, for your son with a medical diagnosis, and for your family. We are here to listen and support you in any way that we can.

    I am a nursing student and my son will soon be 9 years old and he has Tourette Syndrome. We understand how this must be a shock to your family and a sense of relief in finally getting a diagnosis.

    There are discussions that you can read and post anytime or you can start a new one.

    Let us know how we can help you and your family. Steph

  4. #4

    Default Tourettes support group...Nova Scotia???

    Hi Trina!!!! :D

  5. #5

    Default Thanks for the support

    Hi everyone, thanks for all of the encouragement. Our son has been put on Concerta 36 mg. Does anyone else have a child on this med?? If so can you fill me in on the progressive changes and how your child has faired on it. Thanks Trina and Jeff

  6. #6

    Default Tourettes support group...Nova Scotia???

    Hi Trina and Jeff,

    Here is a posting on Concerta.

    How has your family been coping since the diagnosis?

    Even though your child has Tourette Syndrome, he is still the wonderful son that you have always supported and loved.

    Have you been able to contact the support group in your community?

    Stephanie

  7. #7
    Join Date
    Mar 2005
    Location
    Ontario
    Posts
    962

    Default Tourettes support group...Nova Scotia???

    Welcome Trina & Jeff!

    My son has TS+ and yes he too has been on this medication.

    Although my son was considered to have TS at your son's age it took a year before confirming this was the case.

    It is normal to have concerns and worries at first. The response is usually shock even with a medical background because this is your little boy.
    It helped us for my son to better understand what TS was and most importantly that is was alright to have it. While you go through your own inner battles he will be too. These feeling can show in school and socializing in groups or at home afterward.

    This forum provided so much needed support to us and this is why I volunteer as a moderator.

    Feel free to get involved with other topics and ask questions...it helps find the tools you need to help your son and better react to others around you that do not understand.

    We had a in service program at my son's school while he was not there and it was the best thing we could have ever done.
    The teachers were required to attend a in service program during a PA day afterward it was such a success.

    In response to your question:

    Medications do not ever react the same to individuals so it is not easy to gear which is the right one based on others experiences.

    You may also find that your physician has to base his own decisions by trial and error to determine the appropriate med to dispense. In our case my son has been on several different forms of Ritalin over the years all have their own concerns and differences in absorption rates.

    I hope you keep us posted on your progress and utilize this forum for support and understanding of TS. There are so many experiences that have been shared on this forum and some great tips to help manage.

    My son is going on 13 now and with proper guidance, a great support network and him understanding more about his TS+ life is fuller and happier then ever.

    I am glad you both found us


    I would recommend that you read the information provided on the link Stephanie gave you and monitor behavior by journalizing. Let others like school officials, teachers know that the medication has been prescribed and allow them to provide feed back both positive and negative for you to document. Work closely with your physician like with any medications and keep a open line of communication with any concerns or questions.
    PJK

  8. #8
    Join Date
    Jun 2005
    Location
    St. John's NL
    Posts
    1,147

    Default Tourettes support group...Nova Scotia???

    Hi Trina and Jeff

    I can only speak from a personal level and I highly recommend that you have a close partnership with your doctor as you try any meds.

    My oldest son is on Concerta and everything has worked extremely well for him. He is on a higher dose and in October we dropped him back to the dose you refer to and his attention during class was a challenge. I stay connected with our doctor all the time and discuss any changes that I see in him.
    I too take Concerta but not daily. I have had success with it too. The biggest challenge we have seen is that it does cause difficulty at night to fall asleep. I have felt that for me, because I do not take this everyday, that when I do it is often later in the morning and then once the 12-hour slow release wears off, it's late and I can not get to sleep. For my son he is given his every morn ing by 7am at the latest so that by 7pm it is out of his system and he has a few hours to wind down.

    watch closely and document any changes... the good and the bad.
    Janet, mom of 4

    TSFC Homepage


    "Intelligence is always increasing; accommodation allows your intelligence to do what it has always done." Cassie Green, Washington College

  9. #9

    Default Thank You Angels!

    In our eyes all that have replied to our last posting are our guardian angels!! and for that we thank you all for your support. We are starting to see some really possitive changes since Alex has started the Concerta. He and his brother are more like best friends now and he seems to be a bit more focused. The sleeping habits are still out of whack but it's just another hurtle that we have to overcome. Does anyone have any suggestions re: bedtime?? Is a structured routine more effective or ???? Set bedtime....should we be allowing him to do certain activities ie:reading, physical activity?? Once again I look to the PRO's like you guys that have lived with it alot longer than we have. Once again THANKS and God Bless! Trina & Jeff

  10. #10
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,886

    Default Tourettes support group...Nova Scotia???

    Trina and Jeff,

    Thank you for your kind words. Our volunteer staff is available for you whenever you need ifo.

    Please continue to keep us informed of your progress, and if there is a possibility of forming a support group in Nova Scotia.

    Regards,

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