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Thread: Does anyone have a child who's tics have gotten better?

  1. #1

    Default Does anyone have a child who's tics have gotten better?

    My son is about to turn 9 and has been ticcing since he was 4. He has been on Clonodine, Risperidal and now Abilify. The Abilify worked so well that his doctor reduced his dosage a few weeks ago and his tics have come back worse than ever. Two days ago we put him back up to his old dosage....I hope it takes effect soon.

    I could really use some hope right about now. I cannot see the light at the end of this very long tunnel. Neither my husband or myself have TS so not sure how this happened but here we are.

    Does anyone have a child or know of a child that had moderate TS and outgrew it? When did it peak? When did it start getting better?

    I am always reading negative stories.....anyone out there have a positive one?

  2. #2
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: Does anyone have a child who's tics have gotten better?

    Chloe,

    Welcome to the Forum and thank you for joining us. We hope you might find some direction and support in helping your son deal with his diagnosis.

    tics have gotten better?

    In the interests of not setting up yourself or your son for possible confusion, it would be better not to characterize his tics as being better or worse, good or bad, but rather increased or decreased frequency. It may not seem like much, but for a person with Tourette, whose tics are involuntary, suggesting the tics are "bad" suggests a voluntary behavioural problem, and this can lead to his insecurity about his disorder and diminished self esteem.

    Neither my husband or myself have TS so not sure how this happened
    The genetics of Tourette Syndrome are not yet fully understood, but it is likely there may have been some genetic influence along the family tree, but because awareness of Tourette was limited even two generations ago, it's possible it may not have been diagnosed.

    Other scenarios might have been that although old Uncle Ed (as a fictitious example) may have had Tourette, he may have learned to suppress his tics in the presence of the family, or Ed's Tourette may have been have been expressed in ways that were never noticed. For example, if old Ed continually cleared his throat, and if anyone asked he might have said, he's always got a frog in his throat...or maybe he blinked his eyes and did something with his hand, but was able to make it look like a cinder got in his eye.

    The point is, that there may have been Tourette or some associated disorders in the family history that were not noticed, or perhaps not discussed.

    I am always reading negative stories.....anyone out there have a positive one?
    Yes..you son is probably a great young man, creative, charming and full of hope for the future. He needs your support and encouragement for his own self confidence and ability to deal with his Tourette as he grows into an adult, regardless of how his Tourette may manifest itself in the future.

    He should not be identified by his Tourette, just like a child with a port wine stain, or one who stutters, or one whose head shape is a bit different from all the other kids, but by the person he is with his talents, and his abilities.

    Because Tourette is a neurological disorder, the way his brain is wired, it is part of who he is. Tourette is not a behavioural choice, so in your son's case his tics may lessen, but it should be accepted that Tourette tics wax and wane throughout life.

    Here's something else on the positive to consider:

    Doctors and therapists are now recommending a form of specialized cognitive therapy designed specifically for children of about your son's age that might help him gain some control over his tics. This form of therapy is called Cognitive Behavioural Intervention for Tics (CBIT) and has shown positive results in many children. By about ten years old, when your son is becoming self aware would be the appropriate time to investigate whether CBIT would be right for him.

    If you do a search for the term CBIT at the top right of the Forum page, Chloe, there are numerous articles explaining what it is and how it works.


    Does your son receive positive reinforcement from the family, his teachers and playmates with regard to his tics? Can he feel safe at home and does he have a safe place, like his room where he can express his tics without interference?

    Most important, does your son understand that his Tourette is not something he can willingly stop, and that his tics are involuntary because Tourette is a neurological disorder?

    Have you made contact with the local TSFC Chapter in your area for local support?

  3. #3
    Join Date
    Aug 2012
    Location
    USA
    Posts
    141

    Default Re: Does anyone have a child who's tics have gotten better?

    Does anyone have a child or know of a child that had moderate TS and outgrew it? When did it peak? When did it start getting better?

    I am always reading negative stories.....anyone out there have a positive one?


    Hi Chloe!

    Neither of my parents had Tourette's, yet they had 2 children with TS. My tics began at age 5 or 6 and peaked at about 9 or 10. At that time I was really ticcy, with OC behaviors, as well. Maybe OCD, even. By the time I graduated high school, the tics had decreased significantly. And close to my 30th birthday, I was practically tic free. Maybe about 1% or 2% of the level I'd been at as a child.

    The progression of my sibling's TS has been pretty much the same. We have another sibling who had tics as a child but did not continue ticcing into adolescence.

    Steve can answer better than I can, but I believe that, in most cases of TS, the severity of tics tend to decrease. And often to a level that's not even noticeable to outsiders. Also, your son may have learned to hide his tics, so that what you see at home is not the way he acts at school and other places away from his comfort environment.

    I hope your son will experience a similar decrease in tic severity as he gets older.

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