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Newly Diagnosed

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  • Newly Diagnosed

    Hello again, sorry I've not been on here for absolutely ages. Over last few months, my daughter has been undergoing a neurodevelopmental assessment. This has involved attending numerous appointments, trying to share as much information as possible in order to get the full picture. These things take time.

    We now have been given a diagnosis of TS+ (TS & OCD). It helps explain a lot of what she has been experiencing over the last year in particular. It also means that she can now tell people 'I have TS' when they ask her why she is ticcing. It also allows her to apply for an official Tourettes Action ID card, which will offer extra confidence for being out and about.

    My aim is to learn as much as I possibly can about living with TS, so that I can help support her after diagnosis. Can anyone recommend a good book which might help, particularly one aimed at teens? Thanks, Fi.
    Let your smile change the world but don't let the world change your smile! ☺😁😊

  • #2
    Re: Newly Diagnosed

    Hello Fi and thanks for the update! Would you remind us of your daughter's age again, please?

    One of the best books on TS that gives an overview by specialists in different fields was published by the Tourette Association of America and is available on Amazon (in your case Amazon U.K.) and can be purchased in Kindle form at a very reasonable price.

    The book is "A Family's Guide to Tourette Syndrome" and can be found on Amazon U.K. HERE

    I use this particular book as a frequent resource for information on specific topics...please see examples of a few chapters of A Family's Guide I keep in my own cloud archive HERE

    You may even find related books that may interest your daughter on Amazon by searching for Tourette related books.

    Also check out this list of books here on the Forum.

    How is your daughter getting along at school with teachers and classmates?

    What activities outside of schoolwork is your daughter interested in..sports, music, cultural pursuits, hobbies, etc?
    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

    Comment


    • #3
      Re: Newly Diagnosed

      Hi Steve, thanks for your reply.

      A couple of days ago I was on here & actually saw the links to video footage of Dr John Walkup giving talks about Tourettes diagnosis and they were really helpful, so I will buy the book which you have mentioned.

      My daughter is now 15. She loves music, plays several instruments and is involved in a youth drama group. She has told her close friends about the diagnosis and they have been very supportive. It is the Easter holidays over here and she has yet to return to school. I will contact staff next week to update them and we will take things from there.

      Many thanks Steve, really appreciate your help. Just being able to come onto this forum for info and support on such a specialised area is wonderful☺

      Fi
      Let your smile change the world but don't let the world change your smile! ☺😁😊

      Comment


      • #4
        Re: Newly Diagnosed

        Originally posted by mamamusic
        She loves music, plays several instruments and is involved in a youth drama group.
        Fi,

        Thank you for your kind words.

        Have you ever noticed that when your daughter is playing a musical instrument that she might tend to tic less frequently? What about when she is on stage performing...any difference in tic frequency or intensity?

        If your daughter's tic activity tends to be moderated by activities like playing a musical instrument, then her focused attention is likely the reason why.

        In many people with Tourette, engaging in an activity requiring focused attention, their tics tend to decrease and in some cases vanish entirely. This is a phenomenon that has been reported in various articles and anecdotally over the years.

        Please see this Forum post that elaborates on Focused Attention Inhibits Tics and Much More Being Learned About Tourette Syndrome
        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

        Comment


        • #5
          Re: Newly Diagnosed

          Thanks for the update, Fi. It's interesting to hear the differences in diagnosis procedures from place to place.

          My son (about to turn 14) also has TS and OCD, and ADHD and anxiety as well. He enjoys and does well in music too, and he feels that his creativity is actually the flip side of the OCD -- he says that the OCD makes him think outside the box, which he feels makes him more creative.

          I have gotten a lot out of Susan Conners' "The Tourette Syndrome and OCD Checklist: A Practical Reference for Parents and Teachers," the Tourettes-action.org.uk Fact Sheet for Teachers, and Jamie Grace's videos. She has some about coping with TS as a teenager, and she interviewed her parents -- I found her parents' patience inspiring.

          Jamie's channel about TS: https://www.youtube.com/user/teensWts

          Interview with parents (I think she was 14 when she made this!): TS in My Parents Eyes : Part 1 (Feat. Jamie-Graces parents) - YouTube

          Song about TS, written and performed as a teenager: teensWts: Learning to Love - Jamie-Grace original song about Tourette Syndrom - YouTube

          One of her music videos -- this one did a lot to establish her career: Jamie Grace - Hold Me featuring tobyMac (Official Music Video) - YouTube

          My son has been encouraged and inspired by her -- and I discovered here here at the Tourette Canada Forum.

          He's also been inspired by Tim Howard, soccer goalie with TS and OCD.

          If you can connect in person with other teens with TS and their families, that would be great.
          Last edited by aparente001; April 13, 2017, 09:48 PM.

          Comment


          • #6
            Re: Newly Diagnosed

            Hi again ☺

            Steve - when she's playing an instrument, the tics disappear, especially on drums. She's an amazing drummer, really awesome! I'm so proud when I watch her play. Also loves other percussion instruments and enjoys playing guitar too. Very musical!!
            While on stage performing in youth theatre productions, the tics are less noticeable, again probably down to the fact that she's remembering the words to songs, her position on stage etc...

            Have ordered the Family Guide to Tourettes book that you recommended. I have a Kindle app on my tablet but I'd prefer to have the actual book to dip into, so shouldn't be too long until it comes through.

            Aparente- Thanks for all the links and info you've given. I will check these out with my daughter☺.

            She's very creative too, just like your son, and an 'out of the box' thinker also. I love how she sees things so differently, like a real fresh pair of eyes. She often describes herself as a 'picture' thinker.

            Grateful thanks to you both,

            Fi
            Let your smile change the world but don't let the world change your smile! ☺😁😊

            Comment


            • #7
              Re: Newly Diagnosed

              Originally posted by mamamusic
              While on stage performing in youth theatre productions, the tics are less noticeable, again probably down to the fact that she's remembering the words to songs, her position on stage etc...
              Yes, and another factor that might be considered as well, is that at her age 15, your daughter's sense of self awareness has matured to where she may actually be recognizing the premonitory urges that precede her tics (consciously or unconsciously) and actually developing some tic suppression strategies on her own.

              Recognizing and training for using one's premonitory urge is the foundation of CBIT therapy for tic management.

              Have you considered locating a CBIT therapist for your daughter? I know that TA has been working to raise awareness about CBIT and to make CBIT training available for interested therapists.
              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

              Comment


              • #8
                Re: Newly Diagnosed

                Yes, she tells me that she is sometimes aware of the need to tic and says it's like "scratching an itch". When this is done, it releases a lot of tension that has built up.

                I will certainly keep CBIT in mind when it comes to discussing possible treatment options.

                Fi
                Let your smile change the world but don't let the world change your smile! ☺😁😊

                Comment


                • #9
                  Re: Newly Diagnosed

                  Hi Steve,

                  My daughter has now returned to school after the Easter holidays. I have spoken to her guidance teacher who will be giving all of her subject teachers an update. When my daughter feels ready, she may give a presentation at school assembly. Do you have any suggestions as to how she may go about doing this? Thanks, Fi☺

                  ---------- Post Merged at 07:48 AM ---------- Previous Post was at 05:39 AM ----------

                  Also meant to ask if there's a way of adding info about the comorbs (like OCD) in a way which people might understand. So many people just see TS as being the 'swearing disease'.It would be good to help raise some awareness, especially with her teenage peer group.
                  Let your smile change the world but don't let the world change your smile! ☺😁😊

                  Comment


                  • #10
                    Re: Newly Diagnosed

                    Originally posted by mamamusic View Post
                    Also meant to ask if there's a way of adding info about the comorbs (like OCD) in a way which people might understand. So many people just see TS as being the 'swearing disease'.It would be good to help raise some awareness, especially with her teenage peer group.
                    There is quite a bit of information in the Tourette Plus: Related Conditions and Disorders forum on this site, as well as in several more specific sub-forums, including

                    Comment


                    • #11
                      Re: Newly Diagnosed

                      Thanks David!

                      Fi,

                      Many of those "Sticky" posts David alluded to in Tourette Plus: Related Conditions and Disorders might offer precisely the information and explanations she might want to use to explain Tourette Syndrome and the associated disorders.

                      One of the references I use most often to offer an insight into why TS is so closely associated with OCD and ADHD is from the article by Dr. Marco Grados: TS, OCD, ADHD: Closer Together Than We Thought! | Tourette Canada Support Forum

                      Tourettes Action has prepared presentations for schools about Tourette in the form of Powerpoint downloads from their website HERE

                      Being a Powerpoint, your daughter can modify it to incorporate additional information about associated (comorbid) disorders, if she wishes.

                      Another favorite source for information that I like is ADDitude where I glean quite a bit of information for our own Forum, thanks to their excellent resources.

                      You may also wish to search through my own online archive located at Tourettelinks.ca
                      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

                      Comment


                      • #12
                        Re: Newly Diagnosed

                        Hi to you both,

                        David - many thanks for replying. I've had a look at some bits and pieces in the comorbs section that you guided me towards. The OCD UK guide for children & teenagers looks like it might be a good help for us.

                        Steve - again, many thanks for the info you've provided. I'm sure that my daughter & I can create a presentation using some of this. I don't know when she will be ready to present everything but we can take our time putting it together until she feels comfortable.

                        You guys have been such a great help to a mum (and daughter) trying to figure out so many things!☺

                        Fi
                        Let your smile change the world but don't let the world change your smile! ☺😁😊

                        Comment


                        • #13
                          Re: Newly Diagnosed

                          It sounds like your daughter is quite courageous!

                          Here are a couple of resources that might be helpful.

                          A young woman filmed herself educating her classmates about her TS: Tourettes College Presentation - YouTube

                          I like that one a lot because it's concise and the presenter is, as she says, comfortable doing Tourette education. I've seen others that are much longer.

                          Here are the Tourette Association of America's tips for peer education:

                          Regardless of who gives the presentation or which materials are utilized, there are a few universal steps to ensuring a successful peer program:
                          1. Begin by exploring medical conditions other than TS – tap into understanding and empathy about those conditions before drawing a parallel to TS. A simple way to do this it to ask students to raise their hands if they have heard of asthma, then ask them what they know about it. Follow up by exploring their knowledge of some other common medical conditions. Then point out, depending upon the age of the audience, that it would be inappropriate to blame someone –and wrong to tease or bully someone – for having such a medical condition.

                          2. Matter-of-factly introduce TS as another medical condition, and concretely describe and discuss tics as symptoms, using analogies to make tics come alive (e.g. trying to hold back a sneeze, an itch you can’t reach in the middle of your back that becomes intensely distracting, what happens if someone tries not to blink, having the hiccups, etc.). Point out that just like asthma, etc., TS is a medical condition, and no one’s fault. If the presenter has TS, welcome the audience members to make observations about you – notice the tics – explain what the tics are, why you do them, that you can’t help it, that you have done nothing to cause it. This can serve as the opening for providing more detailed information about TS, types of tics, diagnosis, treatment options, etc. The detail and complexity of information offered will vary depending upon the age of the audience.

                          3. Explain that TS is hereditary/genetic. Discuss the different types of traits people inherit from their parents, that medical research is ongoing and that TS is more prevalent in boys than girls. Discuss the fact that an individual with TS did nothing to cause it, that it is not contagious (high-five or shake hands with audience members) and that no one dies from it.

                          4. It is critical to include some type of hands- on/experiential simulation exercise so that peers learn what it “feels like” to have TS. Depending upon age of audience, this can be as simple as trying not to blink for a set period of time, or as complex as writing, the Pledge of Allegiance (include a copy of the Pledge on a slide which participants can refer to) while contending with a set of assigned motor “tics” such as tapping their pencils three times whenever the presenter claps hands and crossing out and re-writing every third word all while the presenter is orally rattling off a detailed homework assignment that students are simultaneously instructed to remember. The goal of the exercise is to tap into empathy. After the simulation, provide time to debrief. Engage peers in a discussion about the challenges posed by the exercise. Encourage students to relate it to the challenges someone with TS faces every day, rather than something they experience for a minute or two. Depending upon the age of the audience, this exercise may also serve as a bridge to a limited discussion about ways to accommodate the challenges that TS may pose to a student during the school day and problem solving in terms of the ways peers and teachers may be of assistance to students with differences.

                          5. Tell the audience that, despite their challenges, people with TS are just like everyone else – smart, talented, creative, etc., and can be every bit as successful professionally as everyone else. People with TS are teachers, doctors, lawyers, psychologists, business executives, chefs, actors, musicians, athletes, politicians, etc. Name some famous people with TS.

                          6. Leave time for Q&A, answering questions simply and honestly. Do not be afraid to say you do not know the answer to a question.Do not be surprised if audience members try to “diagnose” TS in themselves or others. Let them know that not everyone who experiences a tic at some time in his or her life has TS and that it is a medical diagnosis that can only be made by medical professionals.

                          7. Conclude by simply distilling some of the key information provided to reinforce the presentation. One way to do this is by showing an age appropriate video (see Appendix B for resources and age recommendations, and check the TAA website for additional materials).
                          My personal opinion: I think it could be helpful to arrange ahead of time with one or two people in the room to ask some pre-arranged questions in case the audience doesn't ask anything. Also, I think it might be good to bring some short hand-outs to distribute at the end.

                          Comment


                          • #14
                            Re: Newly Diagnosed

                            Hi aparente,

                            Thanks so much for your kind words & very helpful information. Really appreciate this.

                            My daughter is looking through various bits & pieces at the moment and I will show her the details that you posted. I do think that she is quite courageous - it's not an easy time for her but she is keen to raise awareness in her own way. I have told her that I'm here if she needs any help with it but I'm leaving her in charge of what she's planning, so that she feels it's 'her' perspective, not mine. I don't know when she will actually give the presentation, this depends a lot on how she feels. However, if she can get it ready, it will be there for when she wants to go ahead.

                            Fi
                            Let your smile change the world but don't let the world change your smile! ☺😁😊

                            Comment

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