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Thread: Desperate for Help

  1. #1

    Default Desperate for Help

    Our son was diagnosed at the age of 4. His tics started before the age of 1. He is now 13. He is not able to go to school due to what he thinks is a tic, but i'm not sure. He can't handle sound, of any kind. He feels as though his ears bleed and he is in pain. We have had our family doctor check his ears, they are fine. His tics have increased greatly over the last year. We have gone though gagging and wretching, vomiting, massive body jerks, extreme facial and jaw tics, screams and now this. Where does a parent turn for help? We have been turned down by Vancouver Children's Hospital until we have more information from a school psychologist (which he doesn't qualify to see because he is not a behavioral issue and a bright student, honor roll) a child psychiatrist (still waiting for that appointment, no word as to how soon we can see one) and a pediatrician (soonest appointment is May 30th)
    Our son lives in a prison...he rarely comes out of his room for fear of a noise that will send him into a massive tic outburst. We live in a small community...if my child was "body" sick he would have the best care available. Why is this different? And where does a parent turn?

  2. #2
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: Desperate for Help

    Hello Taragrin and thanks for joining the forum!

    I would suggest contacting the Vancouver Chapter of Tourette Canada for local resources and guidance as to where you might get help.


    Has your son ever been given a precise diagnosis for his symptoms? Was there ever any mention of Sensory Processing Disorder which would be treated by an Occupational Therapist.

    It sounds like your son is currently in school and is doing well academically, is that right?

    Has he ever received any form of treatment or therapy for any of his symptoms?

  3. #3

    Default Re: Desperate for Help

    When he was diagnosed with TS, we were told that we knew more about it than the doctor did. I should have run from the room and searched for another doctor. We've been told there is no treatment, no medication. Up until the last year, everything was manageable. We've enforced rules about behaviour and stuck to it. He is a very bright student who has never seen any doctor for any reason. He's never needed a prescription for an illness...all around healthy child. We live 5 hours from Vancouver. He's always had issues with fabric, the hearing is new.....I haven't heard of anyone else who has this problem.
    We uploaded a video to youtube years ago for the doctor to see, he thought he was dealing with a strange case of ADHD...Our son living with tourette syndrome - YouTube

  4. #4
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: Desperate for Help

    Please see the Private Forum Message I sent you.

    Sensory processing is not an unusual associated disorder with a Tourette or ADHD diagnosis.

    Sadly, many physicians just have not had the clinical experience with tic disorders to have an in depth knowledge of the complexity of the symptoms.

    You are your son's best advocate, so do persist in getting him the best possible consultation you can. I would encourage you to follow up on the information I sent you in the PM.

  5. #5

    Default Re: Desperate for Help

    Thank you, we are waiting a call back now! Fingers crossed. He is not doing well, each day seems to worsen.

  6. #6
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: Desperate for Help

    Were you able to contact the office of the resource physician I wrote to you via PM?

  7. #7

    Default Re: Desperate for Help

    Yes, we had our Doctor re-send the information. We called back today to see the progress but only got through to voice mail. Hoping to hear something this afternoon.

  8. #8
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: Desperate for Help

    Do keep us posted on your progress.

    Are there any other issues or concerns you might want help with at this time?

  9. #9

    Default Re: Desperate for Help

    We have been in contact with Dr. Burkey in Williams Lake BC He is seeing our son at 9am tomorrow morning. He is pretty sure that he is having Obsessive Behaviour right now in regards to sound. He sounds very positive that he can help relieve what he is experiencing right now. I'm hopeful, we were at a wall of despair. I feel much more comfortable after speaking with him for the last hour.

  10. #10
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: Desperate for Help

    Excellent!

    Glad to hear your son is being seen by someone who is offering to help.

    Looking forward to hearing about your son's progress.

    Also consider attending the Tourette Canada National Conference in Edmonton next September. Details will be posted shortly on the Tourette Canada website ans here on the forum.

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