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Thread: Do Multiple Vocal Tics Suggest Propensity for More Severe Case of TS?

  1. #1
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    Default Do Multiple Vocal Tics Suggest Propensity for More Severe Case of TS?

    Our almost 6-year-old has now been diagnosed with TS. The diagnosis is very fresh for us so I am not sure how I feel about it all yet. He appears to have more vocal tics than motor, they can be quite frequent (100 or more in a day? Has had 4-5 different ones since new year) and more frequent than motor tics at this point for sure (may go a week without motor tic...? Not totally sure). I am concerned about how severe a case of TS our lovely son may have/progress to and wonder if many vocal tics show a propensity for more severe TS? Sure hoping not....sigh. Am I ever glad for this forum and all the time and effort you Steve put into it...I shall be perusing many of your previous year's resource posts...wow what a gift your posts are for members! Thanks to you and in advance, thanks to all for your replies.
    Warmly,
    Laura

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    Default Re: Do Multiple Vocal Tics Suggest Propensity for More Severe Case of TS?

    Laura,

    The diagnosis is very fresh for us so I am not sure how I feel about it all yet.
    I understand your frustration and concerns as you begin your journey with your son.

    I am not aware, from what I know about the course and progression of TS, that frequency and severity of tic symptoms at age six is a predictor of future tic activity.

    For the reasons I explained in another discussion thread your son's symptoms, with cautious optimism, may moderate as he grows and his young brain matures. This is not to suggest, of course, that Tourette Syndrome can be cured, but according to TS specialists, maturing brain structures, in some cases allow for opportunities for tic symptoms to somewhat moderate.

    Please see the following graphic, taken from one of my favorite resources, a NJCTS Tourette webinar by Dr. Lawrence Brown, titled TOURETTE SYNDROME AND DEVELOPMENTAL DISABILITIES (follow the link to view the entire webinar archive)

    Brown Take Home.jpg

    Additionally, I would like to recommend the following Forum post: Newly Diagnosed: Getting Started (please see the videos as well as the PDF attachments at the bottom of that post)

    Finally, I would like to point you to what I believe is the best book currently available for parents of a child recently diagnosed with Tourette. It is published by the Tourette Association of America and is available on Amazon in Kindle format at a very, very reasonable cost: A Family's Guide to Tourette Syndrome (Also available on Amazon.ca)

    Are you receiving satisfactory support and guidance from your son's doctor(s)?

    How is the rest of your family dealing with your son's symptoms in and around the home?

    How is he doing at school?

    I am concerned about how severe a case of TS our lovely son
    As I am sure you probably know, Tourette does not affect your son's cognitive ability, intelligence, personality, creativity nor any potential for anything he wants to do or accomplish.

    What special skills and/or talents has your son exhibited? Does he have special interests in sporting activities, cultural activities, like music, singing, dancing, drawing etc?

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    Default Re: Do Multiple Vocal Tics Suggest Propensity for More Severe Case of TS?

    Steve thanks for the insights, the optimist, and bringing it around to the gifts Dane has . I've ordered the book you recommended now, thanks!

    Some more background on him: His schooling (just completed Kindergarten) has been affected by anxiety, but so far we haven't been alerted that kids are bugging him about his vocal tics. Being taunted and bullied is our number one concern as my husband (who is playing waiting game for getting diagnosed with TS but meets every criteria so must have it himself), he was taunted and bullied and had a very lonely childhood and I'm pretty sure it fed into his mood/emotional issues--seems to have Borderline Personality Disorder. So we have concerns for Dane, not wanting history to repeat itself.*

    So glad to be reminded of the rule of 1/3s, though my husband's tics certainly never reached remission. Every brain is different though, hopefully Dane outgrows his.

    Dane's school anxiety kept him from attending for about a week and a half, we got a counselor in place then though, and helped him work through it all. Found out he had a fear school staff kidnap kids. No wonder he wouldn't go!*

    He has fears that create procrastination in him, like if I ask him 16 times to do something like get dressed, I start to clue in he figures if he DOESN'T get dressed, he won't have to face what he's been fearing doing (even attending a birthday party when the birthday boy is a bit rough for Dane's style of play). Is non-listening typical of TS? He is beyond selective hearing. He literally diesn't hear me when he is wrapped up in say watching a kids TV show. If I physically touch his shoulder when I talk to him, that helps a fair amount I've noted. Wish I had extend-an-arm! His school teacher has noted he is imaginative but not always on topic of what their task is. He will get sidetracked too, like last night he wanted to play with friends but suddenly had an idea to make a poster about the strawberry tarts Grandma made: "there should be a warning with these that 'if you eat them you might turn into a zombie' because the sauce looks like blood!" So instead of getting ready to go get his friends, he was going to do this side project. I rationalize with him he could do the poster and miss out on his friends, or prioritize when to do which and still get to do both. He got ready for friends.
    This is common for him to get sidetracked, we are in a rush, late for leaving and he decides he has to start choosing toys to take. Maybe just normal 6-year-old stuff, but may be TS related? Haven't seen too much OCD stuff, or ADD/ADHD, he can focus well in one thing, but then doesn't necessarily hear other stuff spoken, that's not ADD that I'm aware of. But may well be TS-related?

    As for how family is affected: Dad feels some guilt around it being his genetics, we both have our moments of regret for our son having to endure this. We both feel life is hard enough without having added challenges, in yet here he is with this added challenge. If he outgrows it, then fabulous. But if he is taunted like his dad was, "Why are you winking at me? Quit winking at me! Yes you are winking at me! You're weird!" And unable to make many friends due to it, then how sad we feel to watch him endure that. Of course we are on the lookout but we can't be with him every step and won't know what is happening at school when we aren't there.

    This does bring me to a big question I have:
    Is it generally felt that TS diagnosis should be shared with the school, or kept from them? I don't want him labeled, but I don't want teachers not recognizing why he does what he does and if would be awesome if they would watch for taunting from other kids. I may start a new thread with this very title! Any pointers here are great. Does a label of TS generally work against his best interest or help him?

    Dad doesn't want us to tell anyone, we don't want people talking to him about the condition so attention isn't drawn to it. So most extended family has yet to learn. Some of them don't have the tact to keep from talking about it in front of him, to him...

    Another big question:
    Is it generally best to not let your child know of the diagnosis, so to avoid them thinking they are different or something is wrong with them, or is it best to talk about what's going on? Or wait till that self-awareness kicks in +\-2 years at age 10? I have started to explain to him already in case we have to talk about it that everyone has quirks and challenges that their genetics present for them, and everyone has gifts from their genetics too. That our physiology is not who we are, it's just our body and bodies have quirks that aren't US. I don't want him identifying himself by a diagnosis.

    I don't know how long we can keep the diagnosis from Grandma who lives in basement suite, she already asks him if his throat is sore and is that why he keeps clearing it, or making excuses of his vocals like, "he just has a cough." For one of the throat-clears she asked him, "does chocolate make you have to clear your throat?" While we want people to not harass him about tics, we can't stop questions, cannot explain it to everyone he ever encounters, and maybe should not be talking in front of him about, "oh it's a vocal tic, he has Tourette Syndrome." How many parents have found bad labelling from sharing the diagnosis I wonder?

    I'm sure in time more family will learn of it, we just don't want family to draw unneeded attention to the tics that may leave him self-conscious.

    And now you asked about gifts! So glad you did! Dane is gifted for sure. Athletically he does not excell, but academically he is showing remarkable skill. He is very bright. His math skills are "exceeding expectation," and he is a little chemist mixing up potions all over the house. But the biggest gift we have seen is his ability to read. He started when he was 3. By the end of Kindergarten when "Children are not expected to read so we don't do it," said his teacher, he is reading at a grade 2-3 level in his own. And he can read words that are grade 5 level. He will look at an ingredient list and fire off, "calcium carbonate, what's that Mom?" We just love it! We have to watch what he reads, as it can feed into his anxiety about things, but what a gift for him in his life! Half a year ago he woke up from a dream, bolted upright and said, "Is there a cure for Lyme Disease?" What 5-year-old worries himself over such things? Ended up the next morning we discussed it, he knew what it was, that it's brought on by a tick bite, had read a pamphlet on the disease! I love that he has an academic advantage! It will set him up for an easier life that way at least. So long as he doesn't read things that fuel too many unfounded fears of course!

    For me, knowing he does have TS helps me not wonder, "what is going on with this kid? What's wrong with him? Why do I have to pull my hair out to get him to buckle his seat-belt? Why won't he leave the yard to go for a walk when I desperately need exercise?..." So I have more patience and space for his behaviour, while not excusing what he CAN manage.

    I do wonder though if we should get another opinion on the diagnosis as motor tics haven't been as obvious...and the diagnosing Ped calls it "Tourettes" which I don't hear used at least on this forum...but she was "very comfortable making a diagnosis" when I questioned her as to why some MDs won't touch it, others say only psychiatrist can, others say neurologist...so how is it determines who is qualified to make a diagnosis? She said as a Ped she sees TS all the time and GPs may not in their adult patients, but Peds know the signs and criteria and she had a Prof with TS and when MDs are not comfortable trying to diagnose, they refer on to say a neurologist, but she is very confident and very comfortable making the diagnosis. I know the criteria requires at least a year of tics and I couldn't guarantee he had them over a year, which got me wondering, "does he really have TS?" I feel she is right, but I want to be sure and I wonder if we should take his counsellor up on her offer to bring in a psychiatrist to get a second opinion of diagnosis.

    Why I mention it all is because my husband doesn't want our son feeling like he's seeing all these doctors and having appts because "something is wrong with him." So what would be your recommendation? Believe the Ped's diagnosis? Get the second opinion so I'm not left wondering if it is right? If I saw definite motor tics in him, like facial ones, then I wouldn't need convincing. But his motor-seeming tics are lip plucking, fingers into mouth (has done this when anxiety is high for over a year), nose wiping, eye wiping, and unable to stop if asked with the lip plucking one. Do those sound like motor tics? Maybe it's some OCD, but thhat doesn't detract from a diagnosis but is congruent with secondary attributes....

    Given its multiple motor tics that are required for a diagnosis yet it's multiple vocal tics I KNOW he has, I have a lingering questioning about if the diagnosis is right as you can read in my words I'm sure. I will keep watch for motor tics. Do you suggest I get a second Dr to assess?

    Okay I better wrap up this novella. Thanks for being here! Sorry if I'm loading too much at once, just trying to hit all our main issues!
    Last edited by Steve; July 12, 2016 at 12:36 PM. Reason: format

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    Default Re: Do Multiple Vocal Tics Suggest Propensity for More Severe Case of TS?

    You've covered a great deal of information and I will try to comment on the highlights. If issues are missed, lets continue the discussion where you can bring them up one at a time.

    Is it generally felt that TS diagnosis should be shared with the school
    Answered HERE in your other discussion thread.

    Is it generally best to not let your child know of the diagnosis
    YES. I commented on advocating and negotiating in your other discussion thread, and by teaching Dane to advocate for himself, he will grow up to be a self reliant, confident young man with good self esteem. If not, he will be insecure, confused and traumatized every time someone inquires about his symptoms or challenges him for his tics.

    Explaining his diagnosis should involve the information he needs at the moment...pretty much like the approach you would use in explaining the birds and the bees. Information he needs right now, save the rest for later when he needs it.

    Dane needs to have a prepared explanation to provide to anyone who might inquire or even challenge him for his tics.

    The explanation I recommend is, "The sounds and/or movements I make are because I have Tourette Syndrome. Tourette Syndrome is a neurological disorder I was born with, and the movements / sounds are involuntary. Are you familiar with Tourette Syndrome?

    I recommend this explanation because it hits the important points:

    • The name: Tourette Syndrome repeated three times so there is no misunderstanding
    • Disorder..it is NOT a sickness nor a disease and it is not "catching"
    • Neurological: the disorder is in the brain wiring; it is genetic and we are born with it.
    • Involuntary: NOT Behavioural...a critical distinction to make, especially with skeptical teachers and poorly informed adults.
    • Ends with a direct question to invite a dialogue to further awareness


    It is recommended that this be rehearsed with Mom and Dad or other trusted friend or family member, to become familiar with the words and to learn other important facts about Tourette. Have available a FAQ type brochure that can be given to the person making the inquiry.

    I do wonder though if we should get another opinion on the diagnosis
    That is certainly your prerogative and you have every right to confirm Dane's diagnosis. It does sound like his Pediatrician has some experience with Tourette, however. Clinical experience with tic disorders and especially Tourette varies from practitioner to practitioner, depending on their particular interests and training. There is no hard and fast rule as to who is competent to diagnose Tourette, which is why, if you are looking for a second opinion, check with Tourette Canada, your local Chapter...in other words, with someone who knows the landscape.

    It sounds like Dane is an exceptional young man with a great deal of potential. It might help to let some time pass to see how his symptoms evolve and follow up with his doctor in a year. In the meantime, provide Dane with as much support at home and at school as possible, so that he is not compromised because of his symptoms.

    Tourette tics, while involuntary are influenced by both internal and external environmental factors. Internal factors would include stress, anxiety, fatigue and excitement while external factors are people, places or situations that exacerbate and maintain tics in a predictable way. The environment does not cause tics, because tics are involuntary, but the environment influences tics.

    Remember that children have an amazing sense of "radar" that can detect the emotions of their parents. Kids sense when parents feel anxiety, fear, stress and anger...and that in turn can create stress in the child.

    Do what you can to mitigate those environmental factors that can adversely influence Dane's symptoms at home and wherever Dane encounters difficulties.

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    Default Re: Do Multiple Vocal Tics Suggest Propensity for More Severe Case of TS?

    Again, great gems for me to ponder Steve, thanks! A question for clarity: when I asked if we should withhold the TS diagnosis from Dane, you said "YES." I think you mean yes tell him, not yes withhold it?
    We should share the diagnosis with him? And at what age wound be best? Right now at 6? I'm always for educating and being forthright, so I'm cool with it. I've just heard opinions like, "tell people he has Tourette and they are going to go looking for it and only see him as that." Not sure if that has any relevance, given the diagnosis would be shared with people who have noticed it....?Sounds like you feel his school should be informed so he has the best help for any needs that arise. I shall share your recommendations with my husband so we can make the best plan for dealing with it. Do you feel we should be proactive then about telling the school? Or wait til there is more visual evidence that he is coping with TS and then tell them? At this point he doesn't have special needs, but I like to be proactive...your thoughts? All your input is such a big help! Thank you!

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    Default Re: Do Multiple Vocal Tics Suggest Propensity for More Severe Case of TS?

    Again, great gems for me to ponder Steve, thanks! A question for clarity: when I asked if we should withhold the TS diagnosis from Dane, you said "YES." I think you mean yes tell him, not yes withhold it?
    I meant yes, tell him, in terms that are appropriate for his age and necessary for his current needs. Dane should not be living a life of insecurity and mystery, wondering why he does what he does and why people might be challenging him for what he does.

    There is a wealth of information to help you as a parent interact with your son in explaining what Tourette is and how it affects him.

    Amazon and others have many books written for kids that can be found by doing a Google search with the terms "Tourette Books Children". Also some of those books are included in the Reading Resource Forum thread.

    You might find the following video informative:



    as well as:

    Handling Classroom Behavior TAA


    Tourette in Basic Terms for Young People (Tourettes Action)

    Tourette Plus, website by Leslie Packer PhD

    School Behavior, another website by Leslie Packer PhD

    ADDitude Magazine

    These are some of my favorite resources for reliable and accurate information on a variety of issues that you may want to explore in depth. It may not all be relevant, but I think the cross section would provide you with a pretty good overview of resources addressing many of the valid concerns you have expressed.

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    Default Re: Do Multiple Vocal Tics Suggest Propensity for More Severe Case of TS?

    You're superb! Thanks for all these helpful links too! :D

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    Default Re: Do Multiple Vocal Tics Suggest Propensity for More Severe Case of TS?

    My Tourette's was always predominantly vocal. But some people have severe self-injurious tics, and complex motor tics that make things very difficult. Thus, I'm fortunate I just utter phrases and words.

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    Default Re: Do Multiple Vocal Tics Suggest Propensity for More Severe Case of TS?

    Thanks for this Kace! So interesting! And yes, I hear you, there could be worse parts of Ts than uttering sounds. I really appreciate your reply!
    Kind regards,
    Laura

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