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  • 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
    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.
    Steve
    TouretteLinks Forum

    Comment


    • #3
      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.

      Comment


      • #4
        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

        TSFC Homepage

        Comment


        • #5
          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

          Comment


          • #6
            New! And scared!

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

            Comment


            • #7
              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

              Comment


              • #8
                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.

                Comment


                • #9
                  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

                  Comment


                  • #10
                    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.
                    Steve
                    TouretteLinks Forum

                    Comment


                    • #11
                      New! And scared!

                      Cherry:

                      Hello and it sounds like you are on the right path. While waiting for the appointment with the specialist make a journal of all the tics and habits to review, reflect on the frequency and if more then one surfaces at the same time.
                      All these points are great to review with a specialist and can further the diagnosis process for both of you.

                      It is a common response of relief when a child finds out that there is an answer to her/his behavior. TS is not something you can turn on or off and the impulse to tic can be greater then the "control" which is more like redirecting.

                      My son became more settled and had less anxiety and even fewer tics after finding out he had TS. You can expect the tics to come & go, usually referred as waxing and wanning. Sometimes it can be a roller coaster ride but together you will get through it.

                      We went through allergists and many other Doctors with all the sniffing, coughing etc. early on not realizing the connection to the TS and the tics.

                      You will find a lot of support her on the forum and many posts you can relate too. I hope you join in and do some reading. There are some good tips for some concerns.

                      You are fortunate to be so close to the GTA area and you have other resources in Barrie for counseling if you need it too. Keeping a positive outlook on the process helps and having patience with the system is always a plus. The answer do not always come fast and easy so hang in there and know we are here to support you through the process.

                      Keep us posted and I am glad you found us.
                      PJK

                      Comment


                      • #12
                        Relief /increase

                        Thanks for your responses everybody. In regards to the relief of finding out about the TS, my daughter has seemed to be much more relaxed, has less inhibitions, and seems to feel so free. However, she seems to have increased the ticcing. I can only surmise that, given that we have discussed the TS and she now knows she doesn't need to supress the ticcing at home, she seems to be releasing all of the ticcing she had been trying to control or supress. Before we found out about the TS, I had been very frustrated about her habits and was constantly "nagging" her to stop it and to give up the annoying habits. Now that we know , like I said, we have told her to feel free to express herself at home, especially if it helps her to keep it in check at school. Is this normal?

                        One other question I have is " we have four stepchildren from my husbands first marriage. They come to our home often. If they have noticed any of my daughters ticcing, they have never mentioned it. Maybe they have just grown with her through it and accepted it as just part of being her, like all of her friends have. How should we address this with them?? We have noticed an increase in ticcing as well as in the volume of her vocal tics. Maybe they will notice too. We are a pretty tight knit family and I don't want to exclude them from this . Any suggestions???
                        Sorry for being so long winded.
                        Cherry

                        Comment


                        • #13
                          New! And scared!

                          Hi Cherry

                          How old are the other children? If you are openly talking about TS with your daughter... keep it going with the siblings. In our family we talk about TS like any other differnce one of could have, freckles, blue eyes, left-hand etc. We have kept our household so open that my kids will ask anything and will tell whoever they meet they have TS... very "matter-of-fact" attitude and it makes a world of difference.

                          The TSFC has great videos and a family handbook for talking to family members about TS. I also have a short story about a little boy in grade 2 that I use to help younger children understand... the approach you use may be determined by the age of the others in the houshold. Let me know if you need anything... the TSFC has tons of resources.
                          Janet

                          TSFC Homepage

                          Comment


                          • #14
                            New! And scared!

                            Cherry

                            It is very common for a child to let the tics go at home especially with a sense of acceptance is in place so yes this is normal and can be a good thing.

                            In connection to the step-children, your daughter may have suppressed enough of her tics in the past that they did not really notice. If they are pre-teens or teenagers they may have ignored her or the tics in general in the past.

                            The tape recommended by Janet is a good one and you need to gear your discussions about TS to the age groups you are dealing with and the maturity levels.

                            In our case we had to explain that our son has TS and this is were the sounds and body movements come from. Home is a safe zone so you see more of them here then at school.
                            It took some time for my step-children to understand and I had to monitor the situation even after the explanations and talks since as my son's tics increased I found the older ones critiquing him on how to manage better or complaining that he was irritating them.

                            We are past that now but when my youngest step-daughter returns for visits she does not know how to handle the vocal tics and although she does not say anything her body language and expressions do. Unfortunately she is very immature for her age and self consumed so her responses are that of a 10 or 12 year old. My son picks up on them and it hurts his feelings and tics become worse.

                            If she came more often and we were given the time to work with her I think it would be better but for now we cringe when the visits are scheduled and her father becomes upset with her behavior & responses. Her behavior is not acceptable going on 17 and she does not fit

                            She is the baby of three and we have five combined.

                            If any of the children are insecure or need to be the center of attention when they visit you may find you have some issues like ours if you do not handle it quickly.
                            PJK

                            Comment


                            • #15
                              Telling siblings

                              Thanks for the input. The step siblings are all older. The 20 year old lives in Ottawa now, the other three are actually all 15 at the moment. They are only 10 1/2 months apart. Oldest is a girl who will be 16 in July. We actually told her today because she was spending the weekend with us. She was very accepting and had the attitude of " so what , it's not going to make Shae(daughter with TS) any different than she was yesterday. I was very pleased and kept checking throughout the weekend and found that the interaction between them was just as at ease and relaxed as always. The boys are twins(just turned 15) and given their sisters' response , I am hopeful that theirs will be very similar, as they all share a very common good and accepting attitude(which can often be seen in the relationships in our blended family) I have heard some major horror stories from blended families and I thank God that we have been so blessed in the relationships we have forged over the last nine years.
                              Our daughter with TS is the youngest of the five and I am hoping that the older siblings will be a support for her rather than an added sense of stress due to rejection or taunting. Thanks for the video suggestion. I will certainly check it out.
                              Cherry

                              Comment

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