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Hi from Alberta

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  • Hi from Alberta

    Hi Everyone,
    I am the mother of a 6 year old boy who has tics. They started about a year ago, well actually they started before that but I didn’t really notice them until they were pointed out by his counselor and it started as a verbal tic (throat clearing) which I dismissed because he has chronic tonsil infections. She pointed them out in the summer of 2010 but I didn’t really think anything of it.

    Then in February of last year I noticed that he was shrugging one shoulder a lot and assumed it was his shirt bothering him until I told him to stop fidgeting one day when he was brushing his teeth, and he told me he couldn’t. From there the shoulder twitch turned into a head and shoulder tic where he would nod his head.

    During one of his bouts of Strep it was so bad I had to help him eat cus he was moving so much he stabbed himself in the mouth to eat. After the nodding he started this eye movement that they were concerned that was a seizure so they did an EEG to rule out seizure activity and the EEG came back normal even while he was doing the eye twitch.

    They have not given him a diagnosis other than “tic’s”. When they told me that if his tics are persistent for more than a year the term Tourettes will be applied I almost burst out into tears 9and actually did when I got home). Until then I knew the word but always associated it with what popular media showed, uncontrollable swearing.

    I have since then done a lot of research but I am still not convinced they are right. There is no family history in his dad’s family or in my family on my mom’s side (I am not sure about my fathers side and have no way of checking) . And what I really don’t get is why we see them more at home but his teacher doesn’t see them? Am I just making it up and crazy???

    Well that was a longer introduction than I intended and I didn’t mean to vent there at the end I apologies.
    Last edited by Steve; February 6, 2012, 07:15 PM. Reason: reformat for easier reading

  • #2
    Re: Hi from Alberta

    Until then I knew the word but always associated it with what popular media showed, uncontrollable swearing.
    By now you know this is not the case and that the perception that Tourette Syndrome involves uncontrolable swearing is based on distorted media hype.

    Were the medical professionals who suggested tics for the time being, specialists in movement disorders with specific clinical interest in Tourette Syndrome? If not sure, it is something you as an empowered parent need to determine. Not all medical professionals have adequate training and/or clincial exposure to Tourette Syndrome in order to make a definitive diagnoisis.

    Tracing Tourette in family historu can be difficult as best and misleading at worst. Many times relatives are reluctant to say, or in reality, one to two generations ago, there was so little awareness of Tourette Syndrome, that it would not have been identified.

    You could ask general questions such as did anyone in the family have any unusual gestures such as eye squintic, throat clearing, persistent coughing, or head jerking, or even occasional grunting or barking sounds? What about difficulty at school, like paying attention?

    These questions might elicit some information that could suggest Tourette activity somewhere in the family tree.

    And what I really don’t get is why we see them more at home but his teacher doesn’t see them?
    Very, very common, Carly! It suggests that your son feels comfortable and safe in your presence to express his tics, but feels less comfortable at school in front of the teacher. So he suppresses his tics. Tic suppression is a temporary witholding of the tic, and eventually he needs to express the tic, perhaps when no one is looking, or he may even re-direct the tic to use other muscle groups to disguise or mask the tic.

    This is actually a good strategy employed by many people with Tourette. Mot everyone is capable of suppressing, but if your son can do it, he should not be discouraged from doing so, In fact tic suppression and re-direction are the basis of CBT therapy being provided to yourng people to help tham control tic activity without the use of medication.

    My ability to suppress and redirect my tics allowed me to work in a field where throughout my career, no one ever suspected I was diagnosed with Tourette Syndrome.

    Have you been in contact with a local support Chapter of TSFC in your area for local information and support?
    TouretteLinks Forum


    • #3
      Re: Hi from Alberta

      Hi Carly,

      Welcome to the TSFC! We do have a great Chapter in the Edmonton area.
      If you want to meet some families living with Tourette, you should sign up for the Trek for Tourette in Spruce Grove.
      There's also another Trek in Oyen.

      One of the diagnostic criteria for Tourette Syndrome is
      The occurrence of tics many times a day (usually in bouts) nearly every day or intermittently throughout a span of more than one year
      So it makes sense that your doctors have not given him the formal diagnosis yet.
      Please know that less than 15% of individuals with TS develop the swearing tic or Coprolalia.

      Please also read this current thread on Tic Suppression.
      Tina, Forum Moderator, TSFC Staff Liaison

      TSFC Homepage
      TSFC Membership


      • #4
        Re: Hi from Alberta


        In terms of genetics, I was adopted and only found out about a year ago my biological father has tourettes, but because it was back in the 80's not much was known about TS and some people still referred to it as 'a bad habit'. As was mentioned, the condition would not have been documented accurately going back a couple generations. The TS gene I have read, can sometimes skip generations, so some family members are carriers of the gene, but do not show symptoms. The it surfaces down the line at what might appear as random or from nowhere.

        What your son is doing, with having tics at home but not showing his teachers, is supressing. I personally still do it even though my tics would be considered mild, and as a child I did the exact same thing and my tics were quite severe. That's why it takes so much time to diagnose it, and they want both vocal and motor tics (last I checked) present over a long period of time despite the fact they don't always show up together, or one type might not show up at all, ever. Supressing tics is a coping mechanism, the tics get bottled up during the day because children learn they will be judged or singled out less, and it becomes a subconscious act. Then they get home to the people they're comfortable with, and the bottle explodes. Let him 'let his tics out', and just be supportive as I know you very likely are, even though it must be very difficult watching him go through it.

        I recommend you do as much research as you can, and keep trying specialists who can help him until you find someone who makes sense of it all and knows what they're talking about.
        I had a doctor try and advise me on how to manage my tics a couple years ago now, I guess it was, when really what he was telling me was all basic information I had already known for years and was well past that. He even asked me if I swear, and I had to explain TO HIM that swearing is a sterotype fueled by media, and is a separate tic in its own right. So yes, there are uninformed doctors out there and you'll have to do a bit of research and hit and misses before you find what your son needs. IT CAN BE DONE!!