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Thread: Mom in Ottawa - New here

  1. #1

    Default Mom in Ottawa - New here

    Hello all,

    I'm a mom to a spirited 4 year old girl who has been having tics since atleast Oct. 2005. I say "atleast" because, in retrospect, I can now identify behaviours which were likely tics within this past year.
    Her behaviour baffles me most of the time. Her tics change very frequently, some only lastly 1-2 days, some sticking around for up to 2-3 weeks, some are more long term, lasting for months. She has had what I consider "typical tics"... throat clearing (the first tic we noticed), head/neck jerking, shoulder shrugging, some vocal squeaks, grimacing, other facial movements, sniffling... the list goes on and on. She has also had more complex tics involving the whole body... hopping, physically pausing, arm extending, twisting her body, touching things with her forehead, various arm movements, hand manipulating, clapping, tapping herself (face, chest, stomach, lap) with the thumb side of her hand, patting the couch, again.. the list is very long. She is very fidgety, constantly flipping back her hair, pulling up her pants, re-adjusting herself it seems. She appears totally aware of her tics.
    Over the past 6 months she has made a few remarks about her tics. She's told us she needs to do it to make herself perfect, if she doesn't do it then she'll have to do it lots and lots. Just last night my husband asked her stop sniffing during bedtime stories (he didn't realize this sniffing was a tic). She became upset, started crying and said she needed to do it to live.
    She also has developed some mild OC behaviours. The tics and OC behaviours have really increased over the past 6 weeks, especially this past week.
    We haven't been abl eto notice a pattern, other then that they may increase with anxiety and sometimes we see them a lot when she's relaxed (ie. watching TV or play) But the tics come at all times really.

    We have been to see the pediatrician, who made a referral to a ped. neurologist. We did see the neurologist, who simply spoke to me for maybe 7 minutes, asking questions and taking a history. He examined my daughter and determined that she was fine, and advised that she could have a transient disorder or possibly TS should the tics continue past 1 year. But that basically we won't do anything (now or should she be diagnosed w/ TS) for her unless the tics become disruptive or cause her problems (ie. school).
    I'm left feeling pretty alone now. I'm not interested in exploring medications at this point, but I'm still hoping to find her support and resources. Not sure if I shold wait that year myself before reaching out for support. I'm left wondering what the likelihood is that these tics are transient. Wondering about what to expect when she starts school in the fall.
    Right now I'm hoping to find families who have also dealt with similar tics and behaviours in thier children. This waiting and being in limbo is nerve wracking at times and I think it will help to know that we're not alone.
    We also have a beautiful and needy 4 month old girl and an almost 6 year old boy who is now possibly allergic to peanuts, so life is busy and overwhelming these days. Wow parenting is an adventure!

    Thanks for reading. This got fairly long! lol

    Jen

  2. #2

    Default Mom in Ottawa - New here

    Hi JenLGA,

    Welcome to the TSFC website, we are happy that you found us.

    There is Tourette Syndrome support groups all across Canada for support resources in your community and click Here for the address.

    Now that you have a possible diagnosis, how has your family been coping?

    Here is the criteria for What is Tourette Syndrome and it is common for tics to come and go.

    Even if your daughter does not talk about her tics, you could talk about it with her. By openly talking about her TS or OCD it might help her to know that it is ok and she might open up about it. By telling her that other people have it and her OCD behaviours are normal for that disease it gives a sense of acceptance.

    Here the TSFC have articles including the Nine Faces of TS Parent they are really interesting.

    We have many discussions on various tics throughout the body in the tic parade. Please jump into any discussion that you want or start a new one.

    You are not alone and we are always here to talk to and give support to you and your family.

    Looking forward to hearing from you.

  3. #3

    Default Mom in Ottawa - New here

    Hi Jen,

    I, too, am going through the same process as you are. My son is 5, and has had mild tics since last June. My daughter, 3, has had throat clearing for almost the past year, but has recently started with some more obvious tics -- severe and rapid blinking and neck and shoulder rolling.

    Last year, my family doctor referred my son to a pediatrician, who (too quickly, in my opinion) diagnosed him with TS. However, as I learned that she does not have a professional interest in Tourette's, I emailed the Tourette's Clinic at Toronto Western Hospital to set up an appt. for him there. They followed up with a call and an appt. for me after getting a referral from my pediatrician. I just felt better having my son seen by someone who specializes in TS. My son has seen a doctor there twice so far, and will see her again in July to get a final diagnosis, as July will be one full year that he has had the tics.

    Right now, he is not exhibiting any associated behaviours, and nor is my daughter. Just seems to be the tics so far.

    This website has been a great help to me, as it gives the opportunity to talk to and share with other parents going through the same things. Feel free to PM me if you like; sometimes it really helps to talk to someone who is going through the same things.

    Take care,

    Sandra

  4. #4
    Join Date
    Jun 2005
    Location
    St. John's NL
    Posts
    1,147

    Default Mom in Ottawa - New here

    Hi Jen

    Welcome to our forum. The feeling of being alone is natural. This is a great place to share short and long stories... we welcome them all. The professionals don't jump quickly to diagnosis because sometimes it can be transient tics... keep in mind that the best thing you have done is recognize at an early age that there may be a problem. When you talk about waiting for a year without support, what type of support do you feel you need for your daughter. She sounds quite comfortable with herself. The doctor was right in that they don't typically do anything ie (therapy) unless the tics are causing a negative impact on the child's life. I can relate to a busy household. You sound like you and your husband are very aware and your daughter sounds like she is a happy little girl. What do you think she would benefit from right now?
    Janet, mom of 4

    TSFC Homepage


    "Intelligence is always increasing; accommodation allows your intelligence to do what it has always done." Cassie Green, Washington College

  5. #5
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,886

    Default Mom in Ottawa - New here

    Hello JenLGA,

    There is an active Chapter of TSFC in Ottawa and the last support meeting before the summer break will take place in June.

    Click Here for The Chapter website and info on the meeting.

  6. #6
    Join Date
    Mar 2005
    Location
    Ontario
    Posts
    962

    Default Mom in Ottawa - New here

    Hello Jen:

    Welcome to our forum and I am glad you found us.

    All the concerns you are experiencing are very natural to feel and questioning what you should do or say can seem overwhelming at first.

    You have been provided some good links and sound advice and experiences.

    I would suggest that you contact the school in advance and let them know your concerns about the possible TS and tics. Schedule an in service program for staff from your local chapter and keep everyone informed but quiet to play it out and see how things fall into place. Once you contact the local chapter the principal can take over from there.

    Journalize experiences and frequencies of tics and which ones, monitor the anxiety your daughter appears to be having from time to time and see if there are "triggers".

    TV and games can increase tics in my son and computers also effect them while reading seems to slow them down.
    School can be a great experience and if the children around her and most importantly the staff are aware of what TS is her experience should be a good one.
    The in service program made a big difference for my son this year.

    Rest assure you are not alone and having the information you need about TS will help you better relate and explain it to your daughter when the time comes. We did it over a long period of time in short bursts that made him feel better about himself and better understand his TS.

    Look forward to you future posts.

    Take care,
    PJK

  7. #7

    Default Mom in Ottawa - New here

    Hola!
    I want to second Stephanie's suggestion about explaining tics to her in terms she can understand. for me, growing up, NOT knowing was really the part that made it hard. i thought it was a horrible character flaw and I think it affected my developing socialization skills as I thought I had this underlying flaw that people would be shocked to know about. Other adults with TS have told me they grew up wondering if they were crazy, or if they were ill and going to die...

    But also, it won't hurt to take a bit of time and get more comfortable with it yourself so that you can easily explain it to her. children will usually follow your lead. If you're able to be nonchalant about it, it will lead her to have a better outlook on it. And for MOST of us that tic, it's the outlook that determines the outcome. ;)

    Regarding your son, I hope the peanut allergy isn't turning out to be TOO serious of a peanut allergy? That could be scary. (((Hug)))

    Good to have you here.

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