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Thread: New to the group

  1. #1
    Join Date
    Jan 2015
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    Winnipeg, MB
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    Default New to the group

    Hi!

    I am the mother of an 8 year old boy, very newly diagnosed with TS. I am a resource teacher and have supported students with TS in my career. Never the less, the diagnosis has caused some momma heartache this week. So far my boy is experiencing vocal ticks in the form of snorting, and motor ticks in the form of nose touching, blinking and grimacing. He is a happy guy, successful at school with lots of buddies. He can be impulsive and is having more difficultly following through with multi step directions. Lots of nail biting in grade 1, but better this year. No signs of ocd yet, except if I touch him on one side of his body, he asks that I touch the other side as well.

    Very glad to have found this group!


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  2. #2
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
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    Default Re: New to the group

    Welcome to the Forum, Tlpatzer, and thanks for joining us!

    Your concern about being recently diagnosed is understandable, so take the time you need to get used to the new diagnosis. Give yourself the time to learn and understand the facts about Tourette by using this Forum along with other reliable resources. You want to dispel the myths and to educate the others who are in your son's life such as other family members, teachers, coaches, and the parents of your son's friends.

    The good news, Tourette Syndrome isn't catching and it isn't life threatening.

    So far my boy is experiencing vocal ticks in the form of snorting, and motor ticks in the form of nose touching, blinking and grimacing.
    Yes, facial tics are usually where symptoms are first expressed.

    He can be impulsive and is having more difficultly following through with multi step directions
    It is best to keep instructions simple, as opposed to those multi step instructions and provide support by monitoring his progress when performing tasks to coach him or help keep him on track. Becoming distracted or overwhelmed with multiple instructions is not uncommon in kids and even us adults with Tourette.

    Symptoms, although they are involuntary, can be influenced by environmental factors, both internal and external. Being stressed, fatigued or excited are factors that can make tics more frequent and/or intense. Focused activity can make tics less frequent and intense.

    Does your son have any unaffected brothers or sisters? How have family members been reacting to your son's tic symptoms?

    He is a happy guy, successful at school with lots of buddies.
    Not surprising, as children with Tourette Syndrome are no different than other kids, as TS does not affect one's personality, intelligence, cognitive abilities or creativity.

    What are some of the other special qualities your son has? How is he in sports or creative pursuits?

    In your work as a resource teacher, have you ever had the opportunity to participate in any of the in=service training programs for educators provided by the Tourette Syndrome Foundation (Tourette Canada)?

    Do you have any immediate questions or concerns you would like addressed?

  3. #3
    Join Date
    Jan 2015
    Location
    Winnipeg, MB
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    33

    Default Re: New to the group

    Hi Steve,

    I am so impressed by your personal and detailed response. I told my husband that I feel like we have support day or night in this forum.

    I have not yet had the opportunity to have pd on the subject of tic disorders, but have done a lot of reading and engaged in professional dialogue with the clinicians I am fortunate to work alongside. My boy has been referred to the Manitoba Adolescent Treatment Centre. There he will learn about Tourette's and we will have access to support, as will my son's school. Phew!

    As far as my boy, he is joyful and sweet with his younger sister. He loves the Wii U, Lego, swimming and hockey. He was 10 weeks premature so he is a little guy with a very minor gross motor delay. This being said, he doesn't know it and he loves participating in any group activity. He also plays the piano and loves seeing his progress.

    Questions that my family members are asking are around the progression on Tourette's. Our tics seem mild at the moment, will they worsen over time? Is this a typical path? Blinking, nose twitching, grimacing, nose touching...what could be next?

    Thank you for all of your help. So appreciated.


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  4. #4
    Join Date
    Aug 2012
    Location
    USA
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    141

    Default Re: New to the group

    Hi Tipatzer!

    Glad you've found this website!

    Questions that my family members are asking are around the progression on Tourette's. Our tics seem mild at the moment, will they worsen over time? Is this a typical path? Blinking, nose twitching, grimacing, nose touching...what could be next?
    It's hard to say whether your son's tics will get better, worse or stay the same during his adolescence, but I believe that the long-term prognosis is that, by adulthood, most people with Tourette will have a significant decrease in symptoms.

    Not an expert here, just another person with Tourette. Welcome to the forum!

  5. #5
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
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    Default Re: New to the group

    Tlpatzer,

    Thank you for your kind words and commendations on your devoted interest in working to help your son.

    Questions that my family members are asking are around the progression on Tourette's. Our tics seem mild at the moment, will they worsen over time? Is this a typical path? Blinking, nose twitching, grimacing, nose touching...what could be next?
    As Twidget alludes to, it's hard to predict what the course of your son's Tourette symptoms might be, as the disorder is so different from one person to another, however here are some general observations on the the course of Tourette:

    • Most people with Tourette have multiple types of tics
    • Tics occur in waves (bouts) and vary in frequency and intensity from week to week and month to month
    • Tics Wax and Wane, and tend to worsen during times of stress
    • Starts in young children
    • Starts with motor tics, then vocal
    • Starts in the head and face, then in the body
    • Starts with simple tics, then more complex tics
    • Peak age of tics 10 – 10.5 years but this may not reflect a single individual’s history



    Rule of Thirds
    • As children grow into adulthood, tics resolve in about one third of cases
    • Tics become substantially less severe in another third
    • In the remainder of cases, Tourette Syndrome stabilizes (usually) without worsening
    • Adults may have a more chronic / severe form of the disorder


    You might also find this post interesting: Common Tics of Tourette Syndrome


    One of my favorite and most informative sources of learning are the free Wednesday webinars provided by the New Jersey Center for Tourette Syndrome (NJCTS).

    I would urge you to look through their archives, and even subscribe to their email notification of upcoming webinars, or follow our notices here on the Forum.

    In particular, have a look at the webinar by Lawrence W. Brown, MD Tourette Syndrome and Developmental Disabilities, April 23, 2014 which I think might address some of your present concerns.

    For the specifics you will need for viewing the archived webinar, including the codec download, please see HERE

  6. #6
    Join Date
    Jan 2015
    Location
    Winnipeg, MB
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    Default Re: New to the group

    This information is so timely and helpful. I am very lucky to have another mom in my neighbourhood with a little boy with Tourette's. We support each other as we discover more. Her little guy is really struggling with a head swinging tic, like he is flipping hair out of his eyes. It is constant, every second of the day. Both she and her husband are so so sad for their boy and seeking to know why this tic is so severe. This boy is in grade 1. They are wondering if he has step throat. Does this increase the severity of tics?? That would be
    New information to me.


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  7. #7
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
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    Default Re: New to the group

    Quote Originally Posted by tlpatzer View Post
    .... another mom in my neighbourhood with a little boy with Tourette's. .....Her little guy is really struggling with a head swinging tic, like he is flipping hair out of his eyes. It is constant, every second of the day. ..... They are wondering if he has step throat. Does this increase the severity of tics?....
    You are referring to PANDAS.

    “PANDAS” is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.

    Whether there is a causal relationship between streptococcal infections and Tourette Syndrome continues to be a hypothesis at this time, to my knowledge, however the mother may want to be responsibly cautious differential diagnosis on behalf of her son.

    The hypothesis suggests that a streptococcal infection attacks the area of the brain affecting movement, but the hypothesis is not well researched and requires further study.

    Specifically PANDAS is suspected when the tics are sudden and immediate following a step infection, so the child would have a strep infection Saturday and the tics would begin on Sunday.

    Having the boy assessed by his doctor, blood tests and additional diagnostic procedures might be ordered to rule out other potential causes for her son's tics, which is customary and responsible medical practice.

    To acquaint yourself with PANDAS I would point you to the following resources:

    PANDAS: Tourette/ Tics / OCD

    Brain Imaging Differences in Tourette and PANDAS

    Antibody binding to neuronal surface in Sydenham chorea, but not in... - PubMed - NCBI

    Overview: P.A.N.D.A.S. : Tourette Syndrome Leslie E. Packer, PhD

    Tourette’s syndrome: a cross sectional study to examine the PANDAS hypothesis

    as well as:

    Tourette's syndrome: a cross sectional study to examine the PANDAS ... - PubMed - NCBI

    If you are interested in additional information about Tourette and PANDAS, there is a NJCTS webinar on the subject by renowned Tourette specialist Dr. Roger Kurlan CAN STREP INFECTION CAUSE TS: IS PANDAS REAL?

    As far as my boy, he is joyful and sweet with his younger sister. He loves the Wii U, Lego, swimming and hockey. ..... he loves participating in any group activity. He also plays the piano and loves seeing his progress.
    I meant to comment on this the other day and omitted to do so..

    One of the interesting features of Tourette Syndrome is the effect on tic activity when the person (kid) is engaged in an activity requiring focused attention, such as playing a musical instrument, drawing, constructing, even juggling!

    What, if any change in your son's tic frequency or intensity have you noticed when he plays the piano, works at Lego construction etc?

    What about when he plays hockey or participating in a group activity?

  8. #8
    Join Date
    Jan 2015
    Location
    Winnipeg, MB
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    33

    Default Re: New to the group

    I am glad to know about PANDAS.

    My boy's tics disappear entirely when playing piano, when engaged in exciting conversation, and when playing video games. Nice that he has some relief, I've become very chill open screen time!


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  9. #9
    Join Date
    Apr 2005
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    Ottawa, Canada
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    Default Re: New to the group

    My boy's tics disappear entirely when playing piano, when engaged in exciting conversation, and when playing video games.
    Using that knowledge is one way that you can provide your son the ability to manage his symptoms.

    Additionally by being vigilant to identify what situations or occurrences tend to trigger tic activity, he can learn ways to either avoid those situations or learn ways to lessen their impact on him.

    Many times teaching your son specific relaxation techniques, such as diaphragmatic breathing, guided imagery and progressive muscle relaxation, he can have these tools available to him when he feels his tic activity increasing.

    None of these eradicates tic symptoms but rather provides your son some degree of control over his environment, which in turn can help manage some of his symptoms.

    These are some of the strategies taught by behavioural therapists (CBIT) in the form of a comprehensive approach to managing Tourette tics, something you may want to look into for your son in the coming years as his sense of self awareness matures at around the age of ten. A developed sense of self awareness is a prerequisite for a successful outcome with CBIT.

    Additional reading you may find informative on the topic of focused attention: Much More Being Learned About Tourette Syndrome

  10. #10
    Join Date
    Aug 2013
    Location
    upstate NY
    Posts
    370

    Default Re: New to the group

    I hope your neighbor joins the forum too -- the one whose son is having trouble with the incessant head swing.

    In your first post you mentioned the heartache you were feeling. How are you feeling now? How are extended family handling the information and the symptoms?

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