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Desperate for Help

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  • 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
    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?
    Steve
    TouretteLinks Forum

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    • #3
      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

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      • #4
        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.
        Steve
        TouretteLinks Forum

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        • #5
          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.

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          • #6
            Re: Desperate for Help

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

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            • #7
              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.

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              • #8
                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?
                Steve
                TouretteLinks Forum

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                • #9
                  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.

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                  • #10
                    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.
                    Steve
                    TouretteLinks Forum

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                    • #11
                      Re: Desperate for Help

                      Taragrin just wanted to share our 6 year old who now has a diagnosis of TS has had aversions to sounds from a young age (by age 1 for sure), I couldn't vacuum for three years lol! And the blender was torture. At school kids making sounds annoy him st times. I think he imagines some of these sounds can hurt him, but occupational hearing protectors helped him through the worst ones. He too has felt his ears must be bleeding but not due to sounds so much as something inabnxious like an ear thermometer used very gently... Perhaps they have fears around ear damage that sounds exacerbate. Have you explored what he thinks will happen to his ears/hearing with sounds? Maybe there's some unspoken fear that is making it worse...didn't catch his age...? Our son has improved and I sure hope your son does. We are nearby in Vernon, if you ever want to be in touch, send me a Forum Private Message.

                      Warmly, Laura
                      Last edited by Steve; July 11, 2016, 02:16 PM. Reason: email address removed (security)

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                      • #12
                        Re: Desperate for Help

                        Originally posted by ElleEm View Post
                        Taragrin just wanted to share our 6 year old who now has a diagnosis of TS has had aversions to sounds from a young age (by age 1 for sure), I couldn't vacuum for three years lol! And the blender was torture. At school kids making sounds annoy him st times. I think he imagines some of these sounds can hurt him, but occupational hearing protectors helped him through the worst ones. He too has felt his ears must be bleeding but not due to sounds so much as something inabnxious like an ear thermometer used very gently... Perhaps they have fears around ear damage that sounds exacerbate. Have you explored what he thinks will happen to his ears/hearing with sounds? Maybe there's some unspoken fear that is making it worse...didn't catch his age...? Our son has improved and I sure hope your son does. We are nearby in Vernon, if you ever want to be in touch, send me a Forum Private Message.

                        Warmly, Laura
                        Laura, I'm so sorry for not updating Kai's progress publicly. We were fortunate enough to be referred to Dr. Roger Freeman (A brilliant TS doctor and amazing help at BC Children's Hospital) Kai has been diagnosed with severe OCD as well as Misophonia (literally, the hatred of sound!) He is on (at this point) 40mgs of flouxetine (prozac) to lesson his OCD (which also seems to ease his Misophonia) Kai is 13, he has some pretty amazing Doctors on his case now. We are so fortunate for this! It was actually the moderator of this site who had helped us find the right Doctor for Kai.
                        Anytime you need to chat, we are here! We aren't very far from Vernon and I'm sure there are things you have experienced differently than us...always willing to lend an ear! Hugs to you, and Thank you for touching base with us!

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                        • #13
                          Re: Desperate for Help

                          Thanks for the update! So glad he's gotten help! Steve the moderator here sure does us all a great service doesn't he? Nice to make your acquaintance :D

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                          • #14
                            Re: Desperate for Help

                            Yes, Steve was the main reason our son was helped! We had been turned down from Children's Hospital twice...we had no where to turn. So very thankful!
                            Nice to chat with you as well!

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