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Thread: Just wanted to say Hi

  1. #1
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    Default Just wanted to say Hi

    Hi there my name is Lora and my son Gavin was just diagnosed with TS, and after waiting a very long time to see a specialist and have her say " Your son has Tourette Syndrome and its one of the worst cases of Tourettes I've seen in over five years" not only broke my heart, it made me feel like I was all alone in a way and that no one would understand or get how hard and frustrating it is for me but mostly my son, I thought if the specialist cant help who can, so now were getting referred to the Tourette clinic (more waiting)but the doctor did tell me about this site, so after a couple of hours of reading on here, I'm feeling a lot better, a lot more informed and not nearly as alone, I don't know a lot about TS yet but I'm trying to read up as much as I can on here so I am very grateful for this site!
    Lora

  2. #2
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    Default Re: Just wanted to say Hi

    Welcome, How old is your son? Do you know of any other family members that had mental health issues? Bipolar, OCD, ADD, dyslexia, stuttering?
    I know it feels like you are alone but surprisingly it's not that uncommon. Have you found out about your local TS chapter or support group?
    TSFC Calgary Resource Unit
    Calgary, Alberta
    Phone: (403) 220-0157
    Email: calgarytourettes@yahoo.ca
    Tourette Syndrome Foundation of Canada

  3. #3
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    Default Re: Just wanted to say Hi

    He just turned 11, I'm not too sure about other family members from what I've heard my mother is Bipolar, but its really just me my husband and my two sons for family at age 7 they said Gavin was slight OCD and has high anxiety disorder, I haven't found any groups yet, the specialist said wait until we take Gavin to the TS clinic and they will give us all the information on ts, groups and all the stuff we need.

  4. #4
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    Default Re: Just wanted to say Hi

    Hello Lora and welcome to the Forum! Thanks for joining us and we hope you will find the information and support you require to become more comfortable with your son's diagnosis.

    The truth is you are not alone and there are numerous resources available to you and to Gavin so he can learn strategies to live with his symptoms.

    Sorry about the insensitive remark made by the doctor who saw your son, however. One can only assume this physician was having an off day or that she has limited experience in dealing with Tourette Syndrome.

    In addition to the technical information about Tourette we have available, I would also direct your attention to the great stories of achievement by people with Tourette Syndrome in the reports we have collected in our Awareness Section

    Given Gavin's age of eleven, Lora, I would suggest you make inquiries about the availability of Comprehensive Behavioural Intervention For Tics or CBIT.

    CBIT is the recommended, non medication first line intervention for children in Gavin's age range to help manage tic activity, using methods similar to those used in Cognitive Behavioural Therapy, but adapted specifically for children with Tourette.

    Our CBIT Section will give you further insights into this form of intervention.

    Medical professionals are in the process of receiving training in CBIT, so you may have to do some research to locate someone who offers it, but the TSFC National Office could point you in the right direction.

    Though it may be a distance to travel, you may consider looking into the TSFC National Meeting in September 2013 in Mississauga where professionals as well as parents dealing with Tourette will share information and provide extensive support.

    Could you elaborate on Gavin's Tourette and related symptoms, and perhaps how the family responds to Gavin's tic expressions in and around your home?

  5. #5
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    Default Re: Just wanted to say Hi

    Thanks for all that information Steve, Sorry I guess I should of explained a lot more about Gavin's symptoms in the first email,(try and bare with me Im sure I don't use the best ways to describe his symptoms but ill try my best)

    It started just over two years ago we noticed he started twitching his head and face a lot, making little noises sort of like growling, clearing his throat and almost like a body shiver all the time, and we would ask him why he was doing that he would say he didn't know, so after having a couple of talks with him and waiting about 2-3 months of him not being able to stop, we took him to our doctor and told him what Gavin was doing, but in the 10 minutes Gavin didn't do any of them, so our doctor said "what do you want me to do I don't see any habits and you just said Gavin couldn't stop doing them"

    So we left and I thought maybe I was over reacting so we just sort of ignored his habits then over about 6 months they got worse and more of them now he was making noises not really words but sounds soft and loud he was slapping things like couch, table his legs, head was still twitching, face was twitching, so found a different doctor explained everything and she said "he has tics and they are very common chances are hell grow out of them just give it time" so thats what we did

    (Now this is when I am going to sound like a horrible mother but I am being very honest): his noises got so loud and every min or so along with yelling ok or wow or hi ect, body twitching and ,head snapping back, now teeth snapping closed as well as clapping we would tell him to stop, and of course he didn't so we would get angry and keep saying Gavin Stop it this went on for quite a while but we kept waiting thinking he would grow out of it because thats what our doctor said so after a year of it going on took Gavin back to the Doctor she said ok will put a referral in to a doctor who specializes in children with tic and Tourette's so after waiting 7 long months we finally got in to see her and after a 4 hour apt that's when she said its he has the worse case of Tourette's shes seen in over 5 years,

    Now were waiting for referral to get in to the Tourette clinic. as of now he does about 4-5 different noises, words like hey, ok, oh, and ya, face twitching, eyes rolling, shoulder shrugging, whole body twitches ,licking lips, we don't say anything about any of them except teeth snapping we give him sugar less gum and tell him to try not to do that cause hell break his teeth and being honest a lot of times when his noises get loud we just say, not so loud, sorry this is so long but I kinda wanted to give you the whole story:-)
    Last edited by Steve; May 25, 2013 at 02:59 PM. Reason: Edit and reformat for easier reading

  6. #6
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    Default Re: Just wanted to say Hi

    Quote Originally Posted by Lora
    we took him to our doctor and told him what Gavin was doing, but in the 10 minutes Gavin didn't do any of them, so our doctor said "what do you want me to do I don't see any habits and you just said Gavin couldn't stop doing them"
    Lora,

    This is a most common occurrence when a young person, especially around Gavin's age, when he has developed some self awareness, and might feel embarrassed or intimidated by the authority of the doctor's presence, would completely suppress his tics when everyone's focus is fixed on him.

    Have you ever tried to do something you are accustomed to do with five or six people staring at you? I don't think anyone feels comfortable in that circumstance.

    The first time I was being evaluated for my Tourette vocal tics, I was in my early teens, an inexperienced psychiatry resident came into the room with a huge tape recorder, turned it on with no introduction attempt to establish a rapport, stuck the microphone in my face and said," Go ahead, make me some noises". Not surprisingly I shut up like a clam and sat there for an hour looking at the tape recorder reels spinning round and round.

    Skilled practitioners who deal with young people with Tourette should be able to establish rapport with the child, and with compassion and empathy, set a relaxed scene where the child can feel comfortable to speak, and perhaps express at least some of his tic repertoire, as long as he feels safe, understood, and accepted.

    ----No there was no over reaction on your part, Lora.

    Depending on the relationship and comfort level Gavin feels at home with his tics, you may ask him to openly video record his tic expressions, in order to show these, with Gavin's agreement to the doctor.




    About one third of kids have transient tic disorders that need to be monitored to determine if the tic disorder actually meets the diagnostic criteria for Tourette Syndrome

    If Gavin's diagnosis is ultimately confirmed as Tourette, then it should be understood by everyone in his life, family, friends, relatives,, school, playmates, parents of playmates, social contacts that Tourette Syndrome is an involuntary neurological disorder that results in involuntary movements of limbs, body torso, and other movements, accompanies by sounds that might include sniffing, coughing, throat clearing, grunting, and even words.

    These are symptoms of his neurological disorder and they cannot be characterized as behaviour....a most important distinction...as they are involuntary.

    Additionally, Gavin needs to feel safe at home to express his tics without interference, without threats of punishment and without implying he is disruptive.

    He needs a safe place within the home, for times when he needs to release any pent up tic energy to be able to express any and all his tics with impunity.....he can say, do act in any way he wants in his safe place, and he should have exclusive use of his safe place within the home.

    Bearing in mind, stress and anxiety, excitement and fatigue are factors that exacerbate tic activity, all measures should be taken to keep these to a minimum in Gavin's life, which could also include eliminating sweets before bed time, caffeine containing products from his diet entirely, and allow him opportunities to deal with any project in the least stressful way possible.

    What's it like at school?

  7. #7
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    Default Re: Just wanted to say Hi

    Thank you so much for this information, I'm reading as much as I can about Tourette but there are still so much I have no idea about, he does all of his tic at home and we just ignore them he does them as much as he wants and as loud as he wants but what I was wondering is when we go out shopping or to eat should we try and get him to try and do them less and not as loud? I see people starring which use to upset me, now I don't care I just stare at them right back but I see Gavin sees it and will try and hide beside me, and I can tell it makes him feel bad I always talk to him about it but I know it still bothers him, The teacher hasn't said anything really Gavin is so good at hiding so many of them that the only thing the teacher said is he should bring extra sweaters because he seems to get cold a lot and he's had a cough the whole year but then again Gavin does not like her at all and really keeps his distance some of the kids ask him why he does things but he always makes up a reason or says I don't know and they seem ok with that so far but then again he dosent like playing with kids he likes being alone which we are working on the school finds him a boy called "special buddy" who will try to play with Gavin over lunch and we try and get him to play with kids at home but he just wont even at a park he just runs around by himself,(any ideas how to deal with that) I don't want to force him to do anything that he feels that strong about.

  8. #8
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    Default Re: Just wanted to say Hi

    Gavin does not like her at all and really keeps his distance some of the kids ask him why he does things but he always makes up a reason or says I don't know and they seem ok with that so far but then again he dosent like playing with kids
    There is a danger in enabling Gavin to seek isolation from his playmates, or to not provide him with an adequate response to reasonable queries about his symptoms.

    If Gavin is not provided with the tools he needs to explain the reason for his symptoms in situations where the curiosity of others is rightfully peaked, then Gavin might develop self esteem issues that could affect his self confidence which in later life could affect his ability to interact socially with friends and later in the workplace.

    The foundation of self esteem and self confidence should be laid down now, providing him with a clear understanding that his Tourette symptoms are nothing to be ashamed of. Expressions of Tourette Syndrome, whether they are vocal tics or motor tics are involuntary meaning they are hard wired in his brain, he cannot control them and they are part of who Gavin is, just like the color of his eyes, the way he kicks a ball and the way he smiles.

    Gavin should be able to articulate to anyone who is interested, that he has Tourette Syndrome, that it is a neurological disorder (not a sickness, and not a disease) and that the sounds and movements he makes are involuntary...cannot be controlled.

    I would suggest role playing various scenarios with him, such as inquisitive people at the mall, insensitive teachers, curious playmates...anyone Gavin might encounter. Allow him to develop his own way to calmly and confidently explain his Tourette making direct eye contact with whomever he is speaking to.


    As for his school, Lora this is where you need the assistance of your local TSFC Chapter or the National Office to provide some in-service training of the school staff and students to acquaint them with Tourette Syndrome.

    Some Chapters have trained in-service presenters who can do this for you, but if none is available, you can purchase the training kit from the TSFC National Office. It includes video, as well as handouts and a step by step manual to guide the presenter through the presentation.

    That way the teachers, the Principal and students are all on the same page with an understanding of Tourette so they can appreciate Gavin's situation.

    I was wondering is when we go out shopping or to eat should we try and get him to try and do them less and not as loud?
    OK only if you promise that if you have an itch or if you need to sneeze when you're out shopping that you and the rest of your family won't scratch the itch or that you will hold back that sneeze

    Seriously, Lora, at this stage, asking Gavin to suppress his tics without any prior training in CBIT or any other form of similar intervention would be counter productive, resulting in raising Gavin's stress and anxiety levels, which in turn will only make matters worse by exacerbating his tic activity.

    His tics are part of who he is, and this is where the family needs to develop ways for Gavin to integrate into the world, feel comfortable wherever he might be and to be able to deflect any attention by simply saying, if and when it's necessary....I have Tourette Syndrome....I cannot control these movements and sounds.

    Sometimes he will need special accommodations to help deal with his symptoms, and maybe with some CBIT training he may be able to manage some of his tic expressions in certain situations temporarily.....but these are all options to investigate with is doctors and support resources in the future.

    Top priority for Gavin today: Self Esteem- make Gavin feel confident that he can achieve anything he desires and that he must not be defined by his Tourette Syndrome, but rather by the outstanding qualities that make Gavin the wonderful young man that he is.

  9. #9
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    Default Re: Just wanted to say Hi

    Oh my Goodness, I have asked both Doctors the same thing as I asked you and neither of them explained it the way you did so thank you so much!! I will be talking to the school this week and will be talking and showing Gavin your email and we will start going about all this the right way!

  10. #10
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    Default Re: Just wanted to say Hi

    Thank you for your kind word, Lora!

    In your conversation with the school, let them know that the TSFC offers in service training to school staff as well as to Gavin's classmates using a prepared program designed specifically for the purpose of acquainting the school with Tourette, what it is, what it isn't, how it affects the afflicted student and how the staff and classmates can accommodate the afflicted person.

    The resources available at TSFC are HERE

    If you have not already made contact with your local Chapter, I would urge you to do that in regards to in service training, as well as local support. If you need further assistance and I would suggest calling the National Office twho can provide you with any other materials or resources you might need.

    We'll be eager to know how it goes with your call to the school, and hope you will continue participating in our Forum.

    If Gavin has any questions or would like to participate in the Forum have him register his own separate account on the Forum, so that his postings would not be confused with yours.

    To paraphrase the title of the HBO movie: Gavin may have Tourette, but Tourette does not have Gavin!

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