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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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  • Exhausted

    I am a first time visitor to this site and was drawn to it from a Sept. 2002 posting from a frustrated parent in BC who commented on a 21 year old son who was staying up all night and waking them every night. We have a 34 year old son, who is currently living on our property in a separate dwelling and have the very same problems and frustrations. Our son has had TS since he was 9, and has been treated for a variety of Psychiatric disorders over the past 5 1/2 years. He spent a total of 24 months in an Assisted Living Facility over a three year period, coming home again last August. He is currently on 20 Mg. of Haloperidol per day, but keeping him on it is a struggle.

    We really believe the majority of his problems stem from TS, but all of the TS specialists here accept only child patients.

    We welcom any and all advice on how to handle continuing problems regarding motivation and behavior. I have been my son's guardian for tw years, which results in a lot of resentment on his part.

    HELP!!!
    Richard in Florida

  • #2
    Exhausted

    Richard:

    Welcome to the TSFC forum. We are glad you found us.

    If you have been unable to reach a local TS Chapter in your area you may contact the number listed below for a chapter located near you. They may also be able to provide some direction to local services in your area.

    CONTACT REPRESENTATIVES
    [outside of Canada call: 1-416-861-8398]

    This number was located under contacts on the homepage of this website.

    What you have described our family has lived through too. In our case it has improved but we still have our periods that we must rotate sleep ourselves just to monitor my son (age12).

    Have you taken your concerns to your sons physician? Has medication or any "triggers" been considered?

    Our son has been put on medication in addition to his regular meds to relax him to sleep but in our case failed to work and then he was exhausted the next day. Everyone reacts differently to treatments.

    We found in our case "triggers" that caused most of his reactions including the Computer monitor, video games, TV cartoons that if not removed early in the evening would over stimulate him to cause a very restless night. Spending to much time using electronics during the day seemed to also create problems.

    When my son reads for an hour or two before bed he tends to rest through the night without getting up all hours of the morning. For this reason he has his own little library to choose from. Being more active can work for my son early in the evening or day to burn off energy, but again to much stimulation can create more sleep problems later.

    Everyone responds differently to some degree so hopefully others will post some ideas that have worked for them too. You can then see what options you have and create your own test run to see what works.

    Have you been keeping a journal on your experiences to review with a Doctor?
    Does your Doctor treat and understand TS and multiple disorders?

    I understand you have concerns with medical care for your adult son, but in some areas it is not easy for those of us with children to find someone educated in our children's conditions too.

    Have you done searches for TS treatment for adults narrowing down the search to states in your area or Florida?

    Have you contacted your State Capitol in connection to the Department of Mental Health Services? Sometimes they know more then the local chapters would and can direct you to services around your area.

    We hope that you will frequent the TSFC forum in the future for support and please keep us posted on your progress.
    Please be assured you are not alone in this and we are glad you found the TSFC forum.

    I am only one of many future responses to your post.
    PJK

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    • #3
      Exhausted

      Richard,

      Have you been in contact with the Tourette Syndrome Association support services in Florida? The Florida Chapter has representation over most of the State, and they could point you to a neurologist with an interest in adults with Tourette.

      The homepage is HERE

      Their contact info is HERE, then click on Contacts

      In what part of Florida are you located?
      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

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      • #4
        Exhausted

        We really believe the majority of his problems stem from TS
        Technically, Tourette's is just tics. Other problems/behavioral problems stem from other diagnoses (or stem from consequences of having Tourette's, but not the Tourette's itself--- things like getting bullied, or having non-understanding family and friends, etc.)...

        Anyway, you also mention in another post that he's been diagnosed with things such as Bipolar and Schitzoaffective disorder. I'm not doctor, of course, but I really think that TS sounds like the LEAST of the issues right now... I have a friend with schitzoaffective disorder so I know how difficult that can be to diagnose and treat! Luckily for my friend, she is VERY interested in not returning to how she felt before meds.

        I've seen several cases where someone has a hard time getting proper treatment because the focus is placed on Tourette's and not on the issues that are truly causing the problems. It can be difficult to seperate the two or more seperate issues, but it is worth it in the long run because the symptoms can be better treated if it is known what is really causing them.

        I wish you luck! With your son not wanting to seek help I can not even imagine how difficult this must be for you. ((((Hugs))))

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        • #5
          Exhausted

          Technically Tourette Syndrome (TS) is a neurological disorder that is characterized by tics. An abnormal metabolism of the neurotransmitters dopamine and serotonin are involved.

          In addition to tics, children with Tourette syndrome are also likely to have emotional and behavior problems or comorbid conditions, have difficulty in school and poor self esteem and they are more likely to have symptoms of obsessive compulsive disorder, anxiety disorders, attention deficit hyperactivity disorder (some children with Tourette syndrome and ADHD don't have tics until they begin stimulant therapy for their ADHD, although stimulants do not cause the tics), learning disabilities, mood disorders and oppositional defiant disorder.

          In order to get accurate help with any syndrome or disease process the best thing to do is to contact a doctor in your area. Steph

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