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Thread: New Here, for My 9yo Daughter

  1. #1
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    Default New Here, for My 9yo Daughter

    Hi everyone,

    Just wanted to introduce myself and more importantly, my daughter. M is 9 years old and we are on the verge of a TS diagnosis. She has had many of the signs (both simple and complex, verbal and motor) for as long as I can remember, but something just clicked in me last week that her tics (which were previously mild and which we attributed to her unique and quirky, sometimes picky, personality) may be signs of TS. I can't believe how much I didn't know about the syndrome, and am kicking myself about missing this for so long! Her tics have been getting more pronounced the past few weeks (currently squeezing her eyes shut, shrugging her shoulders, grunting, forceful exhaling, tilting her head back, clenching her finger and toes, and in the past she did a lot of sniffing, touching her face and hair, and picking at her clothes).

    Our family doc said it's "sounding like TS", but we're being referred to a paediatrician for a formal diagnosis.

    Needless to say, I have a ton of questions about how to help my daughter, and am so glad to read all of your wisdom and experiences. Sorry for the ranting intro. This has been a very unsettling week!

  2. #2
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    Default New Here (for My 9yo Daughter)

    I have a few questions I was hoping your collective wisdom can give me insight on.

    My daughter is 9 and on the verge of a TS diagnosis (family doc briefly said "it's sounding like TS", now we're being referred to a pediatrician for a formal diagnosis). She has had many signs from early childhood, which we always attributed to her unique and quirky personality. Currently, her tics include squeezing her eyes shut, shrugging her shoulders, tilting her head, grunting, clearing her throat, clenching hands and toes, and forceful exhaling her breath. They have changed over time, with some going away (sniffing everything), but some have gotten more pronounced, and some form of them have been exhibited since she was maybe 3 or 4 (along with sleep disturbances, namely night terrors and sleepwalking, and picky eating, and being very particular about her clothes). She says "I feel like I have to make claws with my hands, and my feet". We just clued in last week that it could be TS! I remember asking her to stop grunting and blinking so hard a few weeks ago, and she was able to stop for a few minutes and then it starts again, which I feel terrible about now, because I assumed it was behavioural before!

    Anyway, my questions, among many, include:

    1. How do we explain this to her in kid-friendly terms? How much info do we provide? Are there recommended books aimed at children about TS? I found some for parents at our local library, but nothing for kids. What do we tell her about this syndrome?

    2. Who/when/what do we tell family members and friends, her school, camps, activities? We don't know what the right route is. Do we tell everyone we know because they will notice it anyway, and it's better to preemptively name and normalize it, and to promote general societal education and acceptance, or do we not tell anyone and not make it a big deal, because for the most part the tics and behaviours don't seem to bother her (yet...they seem to be getting more obvious lately, and I've read tics can peak in early adolescence, so we are mentally prepared)?

    3. Is it better to investigate therapies now or wait until things get problematic? How do we know what therapies to investigate? Is there a list of things to start with? Basically, what are our next steps?

    I worry in general about her increased chance of developing OCD, anxiety disorders, and the usual poor coping mechanisms from stigma and social challenges (substance abuse, eating disorders, etc). Sorry for the long vent, but I am dealing with a lot of emotions this past week (guilt, worry, anxiety about the future, etc). I realize her issues are minor compared to the health challenges some kids struggle with, but it's just such a blow that we didn't see it for so long! Is it common to have symptoms years before diagnosis?

    Thanks for all and any comments and guidance.

  3. #3
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    Default Re: New Here, for My 9yo Daughter

    Welcome! I also am new here, but have found this place to be a wonderful source of information!
    I am glad you are getting your daughter in for a diagnosis so early. I am 46 and have had symptoms since
    I was 6 or 7, and just got diagnosed. I can't imagine how different my life would have been had I known what
    was happening with me, so I am very happy for you and your daughter! Best wishes for the future!

    Kerm

  4. #4
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    Default Re: New Here, for My 9yo Daughter

    Welcome to the Forum, Annadenomey! Thank you for joining us and commendations on your interest and dedication to gain the information and access the resources that can help your daughter.

    A formal and definitive TS diagnosis may take several months, to confirm, from the initial visit depending on symptoms, medical and family history.

    There may be some medical diagnostic tests ordered to rule out medical conditions that cause tics, and although there is no diagnostic test for Tourette, the diagnosis is made through observation and interview, preferably by a medical professional with training and clinical experience in movement disorders, and specifically in Tourette Syndrome.

    Not all medical professionals have this expertise, so for your daughter's benefit, ask the consultants who will be seeing her about their clincical experience with Tourette Syndrome.

    Because children will sometimes suppress their tic symptoms in front of the doctor, it can help to bring along some discreetly made videos of your daughter's symptoms, along with a detailed history (diary) of her symptoms over the years. This can be prepared at your leisure ahead of the actual visit, which will provide the consultant with important information about the evolution of her symptoms.

    Bear in mind that about one third of kids experience tics during their growing up years that don't develop into anything more as they mature.

    Also take note of any signs or symptoms of associated disorders, usually seen with a TS diagnosis, such as OCD, ADHD, mood or anxiety disorders, sensory issues, and opposition defiant disorder.

    If some of these are present, be sure to report them to the doctor, so necessary steps can be taken to address any of these associated conditions.

    Have a look around the Forum, and feel free to ask any questions, join in any of the ongoing discussions or start some of your own.

    Looking forward to continuing the conversation!

  5. #5
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    Default Re: New Here (for My 9yo Daughter)

    Annadenomey,

    Your questions are all important and relevant, and I would like to get back to them shortly. I have to be away for part of today, and will address each of your questions when I get back.

    Perhaps others on the Forum might offer their own insights.

    In the meantime have a look at this highly acclaimed HBO production about kids living with TS called I Have Tourettes, But Tourettes Doesn't Have Me


  6. #6
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    Default Re: New Here (for My 9yo Daughter)

    Quote Originally Posted by Annadenomey View Post
    Anyway, my questions, among many, include:

    1. How do we explain this to her in kid-friendly terms? How much info do we provide? Are there recommended books aimed at children about TS? I found some for parents at our local library, but nothing for kids. What do we tell her about this syndrome?
    Books for kids can be found in this extensive Forum thread: Reading Resources TS and Associated Disorders Frequent Updates specifically A Family's Guide to Tourette Syndrome (Kindle Version)

    View this video: Tourette Syndrome: Getting Started/Newly Diagnosed

    Read A letter to parents of children newly diagnosed with Tourette’s Syndrome as well as Educating Peers About Tourette’s Syndrome

    Also Tourette Syndrome and School: Your Child, His Tics and How To Tell his Classmates

    and finally, How do I tell my child he/she has tourette syndrome?

    2. Who/when/what do we tell family members and friends, her school, camps, activities? We don't know what the right route is. Do we tell everyone we know because they will notice it anyway, and it's better to preemptively name and normalize it, and to promote general societal education and acceptance, or do we not tell anyone and not make it a big deal, because for the most part the tics and behaviours don't seem to bother her (yet...they seem to be getting more obvious lately, and I've read tics can peak in early adolescence, so we are mentally prepared)?
    Tell people on a need to know basis, while preparing your daughter to advocate and negotiate for herself. These skills are crucial for a person with TS, to navigate the world as a student, a playmate, a classmate in higher education, and a colleague in the workplace.

    She needs to have an explanation ready to answer anyone who inquires about her symptoms, or when she needs to be proactive in a situation that requires it.

    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 a parent 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.

    3. Is it better to investigate therapies now or wait until things get problematic? How do we know what therapies to investigate? Is there a list of things to start with? Basically, what are our next steps?
    There is no need to investigate therapies unless a particular symptom causes impairment, difficulty or discomfort for your daughter. The focus should be on the needs of your daughter, as opposed to how family members feel, how the teacher feels or anyone else for that matter.

    Most common intervention is education and passage of time. If child is not affected by self esteem or social interaction, first line could be behavioral therapy
    Medical Treatments …. usually second options


    I worry in general about her increased chance of developing OCD, anxiety disorders, and the usual poor coping mechanisms from stigma and social challenges (substance abuse, eating disorders, etc).
    Your concern is well justified and worthy of consideration. Tourette is not just the tics, but is often a complex mixture of associated (comorbid) conditions that might include some or several of OCD, ADHD, anxiety and or mood disorders, sensory issues, learning disability and oppositional defiant disorder.

    It is often more important to address and seek intervention for the associated conditions than for the tics, as the associated conditions can be lifelong, whereas with cautious optimism, tics may subside.

    Rule of Thirds.jpg




    I would further point you to these final two, critically informative presentations that may address some of your concerns, as presented by two eminent authorities on Tourette Syndrome:

    1) TOURETTE SYNDROME AND DEVELOPMENTAL DISABILITIES Download and view this free online webinar from NJCTS archives Presenter: Lawrence W. Brown, MD

    2) Comprehensive Behavioral Intervention for Tics Part 1 by, Douglas Woods. Ph.D, Professor of Psychology. In this video you will learn about how involuntary tics are influenced by the environment. This is necessary learning for anyone new to Tourette.



  7. #7
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    Default Re: New Here (for My 9yo Daughter)

    Thank you so much for all the useful resources! I have been checking them out slowly and digesting all the info. It's very helpful.

  8. #8
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    Default Re: New Here, for My 9yo Daughter

    You are most welcome! I'll be looking forward to continuing the discussion when you're ready.

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