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Thread: Hello

  1. #1
    Join Date
    Feb 2012
    Location
    ottawa
    Posts
    4

    Default Hello

    Hi there, I was told my son had tourettes at the age of four. Was told that it wasnt affecting is life so there was no follow up regarding his tourettes.

    He is now nine years old and experiencing co-morbid symptoms and have to start all over with neurologist and a pediatrician that isnt in half the time.

    He is failing school, stressed..his tics still have good days and bad but can get to a point where it looks painfull. I need information on getting him tutoring to suit his needs and perhaps financial aid since jsut the basics at one of the leading centres is going to cost 400.00 a month. plus assesment is an additional hundred.

    The school he is attening has an IEP being set up but not sure how this is going to catch himup since he is a full Year if not more behind. Help!! lol

    I tried leaving a message two weeks ago at the centre in ottawa but still have not had a reply.

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

    Default Re: Hello

    Martina,

    You've raised several issues that need to be addressed one at a time.

    was told my son had tourettes at the age of four. Was told that it wasnt affecting is life so there was no follow up regarding his tourettes
    Unfortunately the lack of training about Tourette Syndrome among some physicians leads to improper counseling as to available options for parents. It sounds like you are following up at the present time:

    start all over with neurologist and a pediatrician
    This sounds good and should be a positive development. Has your son been seen by one or the other and what is the plan of action for your son?

    his tics still have good days and bad but can get to a point where it looks painful
    Are his tics actually causing your son discomfort or pain or is it your perception when you see him expressing his tics that it looks painful? In fact, it may not be painful at all for him, and by expressing his tics, he might be experiencing some form of relief.

    What has your son told you about his tics?

    the basics at one of the leading centres is going to cost 400.00 a month
    Are you refering to a commercial service that provides tutoring? What services do they provide and are there any other alternatives?

    I tried leaving a message two weeks ago at the centre in ottawa but still have not had a reply.
    Are you saying you left a message at the tutoring center, and they have not called back after two weeks? Have you followed up to ask why they have not returned your call?

    On a general note, Martina, how is your family responding to your son's tic activity around the house? Is everyone supportive, or are his tics and perhaps other behaviours a source of tension among some family members?

    Also, have you been in contact with the local Ottawa Chapter of the TSFC for support and information about resources close to home?

  3. #3
    Join Date
    Feb 2012
    Location
    ottawa
    Posts
    4

    Default Re: Hello

    Hi Steve,
    I guess I was all over the road :subdued:.Thanks for responding. I spoke yesterday with a woman from the tourettes foundation and she was very helpfull. She is sending me via email more information which I appreciate greatly. He was seen by a neuologist at the age of four and at age six and no has not seen one since.

    I am attempting to get him seen again because now that he is having other difficulties I dont know what else to do.We are all very supportive at home regarding his tics , they do not seem to bother him except one he has devloped recently involving grimacing , pulling his face to one side.opening his eyes wide and followed by a gagging. This has only been the last week all of them together and it seems its the gagging that is most bothering though it is not everyday he is doing that.

    So I guess the others jsut look painful to me when the tics make his muscles spasm. I guess I am looking to just educate myself more which I have done through reading..a lot..but as I have come to realize tourettes has such a lare spectrum of things going on and obviously individual experience and opinions vary on the subject I think I am feeling oerwhelmed.

    I just want to help my son. The tics I really couldnt care less about as long as he is happy and it is not affecting him,, its now the learning issues and his anxiety that I am concerned about. He has never been medicated and the thought of going through that is intimidating to me for I have heard of personality changes and other unwanted side effects.

    I like him just the way he is !:subdued: Now that the Ottawa Tourettes foundation has contacted me and I can attend the next meeting I am feeling relieved.

  4. #4
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
    Posts
    5,939

    Default Re: Hello

    Hi Martina,

    I'm glad to hear about the progress you've made in contacting the TSFC and that you will be attending the support meeting in Ottawa.

    Use this Forum as a source of information and support as you need it.

    He has never been medicated and the thought of going through that is intimidating to me for I have heard of personality changes and other unwanted side effects.
    Medication options for Tourette and associated disorders depend on the severity of the symptoms and how the symptoms might affect quality of life. Many people with Tourette go through life not using any medications, especially for tic suppression. However, associated conditions such as OCD, ADD, anxiety or even depression are easily treatable with medications that are relatively easy to tolerate.

    As you allude to, no medication is 100% side effect free, however modern meds used for these conditions have been developed to be well tolerated, and decisions made with your doctor will always take into consideration the benefits vs the risks or inconveniences of the treatment plan.


    So I guess the others jsut look painful to me when the tics make his muscles spasm

    Chances aer the tics are not spasms, but muscle contractions your son is exercising as part of his tic urge. Have you asked him if he feels any pain or discomfort when exercising that particular tic?

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