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Thread: New! And scared!

  1. #1

    Default New! And scared!

    Hello,
    My name is Cherry and it is just in the last couple of days that I have become aware of TS. My daughter has been exhibiting many of these Tics for 4-5 years now. She is currently 12. My response was always,"oh no not another habit" It seemed that as she gave up one habit, another replaced it. Now we are into several at once. A family member finally asked about one of the tics and my response was "of course I notice and it drives me crazy, I've been trying to get her to stop! This person called my daughters action a tic, which was what prompted me to log on to the internet and check it out. When I read the list of tics and the information surrounding this disorder, I felt as though I was reading a bio on my daughter. It scares me. For years I have been nagging her to give up what I called "these annoying habits" when in fact I may be dealing with TS. I have scheduled an appointment with the family doctor, and I guess we'll go from there. Would appreciate any support or leads on support in the Barrie area that you can offer. I am unaware of any Tourettes doctors in the Barrie area but would appreciate contacts for diagnosis.
    I am very concerned for the future but hopefully now we have begun a journey towards a brighter future now that we have a knowledge that this syndrome even exists.

  2. #2
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,886

    Default New! And scared!

    Hello Cherry and welcome to the TSFC Forum. I'm glad you found us and we'll be pleased to guide you along your new discovery.

    If indeed your daughter is diagnosed with Tourette Syndrome, be assured it's not the end of the world. There are strategies and treatments available that can help her and you deal with it.

    I'm not sure what resources are available in Barrie, but you may wish to check with the National Office to find out (800) 361-3120.

    Here's the list of currently available Chapters of TSFC

    Have a look through the Forum postings as well as the information contained on the TSFC website. You can link to the TSFC homepage by using the link below my signature.

    Each of us who discovered that the "habits" we had during our lives actually have a name, needed time for adjustment. Until you have a firm diagnosis from a physician who has a professional interest in Tourette, it is best not to get ahead of yourself.

    Your family doctor may wish to get a consultation from a neurologist or other specialist if s/he does not have experience in diagnosing Tourette.

    There is no blood test or other diagnostic test for Tourette, and the diagnosis is made through observation and interview. That's why you need to eventually consult a specialist with the expertise to make a diagnosis.

    If no local resources are available, there is a Tourette Clinic in Toronto..the details of which you can get from the National Office.

    You may wish to read and download this document, which summarizes Tourette Syndrome.

    Let us know what questions you have and how we may help you further.

  3. #3

    Default New! And scared!

    Hi Cherry,

    Don't be afraid, TS is a syndrome that does not affect a person's lifespan and neither does it affect a persons ability to live a happy life.

    There is an article called the Nine faces of a TS parent that is really interesting to read and it is found here .

    Please don't ask your daughter to stop her tics because she can't and it will only frustrate both of you.

    On this forum we are here to support you and your daughter. We are here to listen and guide you in these emotional first steps.

    Keep posting so that we know how we can help you.

  4. #4
    Join Date
    Jun 2005
    Location
    St. John's NL
    Posts
    1,147

    Default New! And scared!

    Hi Cherry

    I feel your pain and frustration. I, like you, was on my son's back to "stop" all these little idiosyncracies that he had. Yikes! To make matters worse, once we went through the diagnostic process and he was disgnosed (age 9) ...I discovered that he got TS from me. Another Yikes! I was never diagnosed and as I aged my symptoms became less obvious ie the Tics became less obvious. TS can cause other associated behaviors such as ADHD and OCD and sensory defensiveness... which are often the most prevalent... the symptoms of the associated disorders are often what interfers most with us over our lifetime. Once I realized I had TS , my life and childhood became so clear to me... it shed so much light on the confusion I went through as a kid and even into my young adult life.

    Don't fear TS. With knowledge will come the understanding and trust me... you'll understand it. Follow Steve's advice and contact the TSFC office and they will tell you where to start for the right medical care and assessment. I would suggest you start taking notes and journaling all the different habit-like behaviors your child has displayed and document any changes in behavior, moods, or things she is fussy about (ex. smells, ridges in her socks, textures of food or clothing) this will all be helpful when the professionals start to ask questions.

    stay connected with us and be sure to ask any question that pops in your head.
    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

  5. #5

    Default New! And scared!

    Based on what everyone else has said, you can probably see that your situation is not all that uncommon. There are many here who have gone through similar transitions, or who have been on the other side (having Tourette's Syndrome themselves).

    Welcome!
    Colin

  6. #6

    Default New! And scared!

    Hi, good to meet you. Please keep us posted as to how things are coming along.

  7. #7

    Default New! And scared!

    Hi Cherry,

    I share your feelings...I am the mother of a 5 year old son with TS symptoms, and a 3 year old daughter who has just recently started with symptoms as well. I am from Milton.

    Neither of my children have been diagnosed officially; we have had two appointments so far at the Tourette's Clinic at Toronto Western Hospital for my son. His third appointment, scheduled for July, will mark the "one-year" point of his symptoms having started, and it is then that the doctor will most likely diagnose him officially.

    We first met with our family doctor, who then referred us to our local pediatrician. The pediatrician clinically (and very quickly, I might add) diagnosed him with TS, but since she didn't have a professional interest in TS, I felt more comfortable contacting the Tourette's Clinic at TWH myself. I emailed them, and they followed up with a call and an appointment.

    Since joining this website, I have learned from Steve and many others here of the importance of ensuring that the doctor who gives you a diagnosis does specialize/have a professional interest in Tourette's Syndrome. I didn't want there to be a chance of my son being misdiagnosed, and so I proactively sought out the Tourette's Clinic at TWH.

    Let me know how you're doing, and feel free to PM me if you like. I, too, am very scared at times, but knowing that this website exists has helped me a lot.

    Take care,

    Sandra

  8. #8

    Default New! And scared!

    Hi Sandra,

    I didn't want there to be a chance of my son being misdiagnosed
    I always feel sorry for the people who are misdiagnosed. They must find it hard to trust the healthcare system.

    Let us know how the appointment goes at the Tourette's Clinic.

    I am very interested to know because I would like to take my son and husband there.

    My husband feels he may never get a diagnosis even though it is clear that he has TS.

    Therefore, it seems worth the expense of a trip.

  9. #9

    Default Still new but not as scared

    Hi everyone,
    Thanks so much for your input so far. Yesterday we had our first appointment with our family doctor. He said that he is quite certain that she has TS but is going to refer her to a neurologist for further consult. He was unaware of the clinic at Toronto Western but I told him about it. He seemed very eager to help us and to get us onto someone who may help more. He assured us we would hear from him shortly as soon as he looked into the available options . He was also very open to working with us in the future and welcomed the opportunity to learn more about TS.
    I discussed the possibilty of TS with my daughter after reading lots of info and after hearing from you guys, before her appointment yesterday. I was glad to see that her reaction was almost one of relief! Now she had a possible explanation for her "habits", and she wasn't just wierd, or anything like that. She was very open with the doctor and was willing to share her thoughts with him as well. He was able to observe her ticcing in his office as well.
    I am now looking forward to moving forward in this direction and am thankful that I have this group to talk to and get support from. Thanks everyone. I'll let you know what develops from here.
    Cherry

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

    Default New! And scared!

    Cherry,

    It sound like you family doctor is taking a responsible approach to reaching a definitive diagnosis. Most neurologists have at least some professional interest in Tourette, and you may wish to pursue a consultation at Toronto Western, if it makes sense to you.

    Though you would not want to appear to be challenging your neurologists expertise, you may wish to let him/her know that you have been doing some research on Tourette.

    This will alert the physician you have some understanding of the disorder, and will open the door to a more insightful dialogue.

    If your family doctor wants more information on Tourette, he/she is welcome to join us here, or to call the National Office at (800) 361-3120 where they can provide some professional resources.

    Your daughter's sense of relief comes from knowing that she is not the only one on the world doing these things, and that it has a name...Tourette Syndrome.

    Before having this knowledge, and some people go undiagnosed until very late in life, one has the sense there is something odd and unusual about them, but are often afraid to talk about it, because there is the faulty logic no one would understand.

    This faulty logic can lead to many emotional and psychological disorders, as well as a sense of isolation and even rejection.

    However, as you have rightfully done, you have given your daughter's life back to her. She can now learn strategies to deal with her Tourette and through education, understanding and support she can enjoy her adult life to the fullest.

    Congratulations Cherry, for being a caring and loving Mom and for opening these doors for your daughter. I am sure she will be forever grateful to you.

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