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New here;Mum from the Niagara region

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  • New here;Mum from the Niagara region

    just thought i would say a quick hello... i will post a longer intro when i have more time.

    also- i am so used to writing shorthand with websites/supportgroups on disorders.. i hope you do it on this site too
    examples-SX= symptoms, DX= diganosis, RX= prescription PDOC= Psychiatrist etc...

    I am a mother to two special boys. Russell, 11 and Devon 5. Both have a mulitude of dx's but Devon is my child with ts. He wasnt dxd till recently 1) because he IS still so young and 2) because he has such overlapping sx of other dx's and 3) his motor tics- well we over looked most of them thinking he was just weird... alot of the facial expressions he had/has we assumed were just part of a very eccentric part of his personality... we were also very caught up in his bipolar dx and still are. The moods are horrendous so the tics just didnt seem important in the grand scheme of things and kind of well.. got overlooked... my older son never had them so i didnt know what i was seeing and my older son has a seperate dx of ocd so i assumed devon was headed there too with his obsessions/compulsion sx too..

    RUssell was dxd with bipolar at age 5 after i noticed since the age of 18 months things werent " right" Devon was dxd at 2 1/2 with bipolar.. and at still hadnt said more then 5 words by age 2 1/2 either. Hes also delayed. Right now at age 5 hes functioning at a level of age 2.5 years old overall. He recieves OT at school and recieved speech services till last year. They also are wondering if he has CAPS but cant test till next year. We are in the process of having him tested at sick kids in toronto for another psycho. developmental/ assessement. the last one was through the autism clinic in the niagara region but his pdoc and numerous other people including myself dont agree with the findings. He was seeing a dev. pediatriciatian up until 2 months ago who imo didnt know much... she mistook his constant eye rolling and grimacing for seizures... which is great to rule out.. but not 3 eegs later including a sleep deprived one.. without even thinking it was TS.. then got on the adhd band wagon and was really pushing stims on us.. thats when we went back and pushed our way into the pdocs office.. hard thing to do in the niagara region..

    right now both of my children are far from stable.. and MAY ( and november) i swear are the toughest times for bipolar... at least for my kids- and me anyhow.. every year its like clockwork..and the more devons frustrated and his anxiety and moods are out of whack.. the more his obsessions and tics are prounouced.. it took TWO ea's just to get him into school this morning.. CARRYING HIM :roll: he was like a wild animal... kicking biting screaming clawing.. i have to of course put on the whole june cleaver act.. and i am left emotionally and physically drained... this all after my older son had a 1/2 hour melt down before we even LEFT the house... i swear i need a vacation!

    btw.. did i mention I AM bipolar? :shock: lolol

    speaking of school and devon.. i have a 1/2 an hour before i have to get him again ( hes only in school from 9- 1120) so i think i am going to go try and catch up on my 200 emails lolol

    nice to be here :P

    Su

  • #2
    New here;Mum from the Niagara region

    Hi Suzanne 1972,

    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 diagnosis, how has your family been coping?

    I did have a difficult time reading your letter with the abbreviations. So please forgive me if I misinterpreted something differently.

    I am really glad that you are continuing to discuss Russell's diagnosis with his doctors. To be diagnosed at age 5 and Devon at age 2 1/2 with a serious medical condition such as bipolar is something that should probably be reassessed every year.

    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.

    Comment


    • #3
      New here;Mum from the Niagara region

      Hello Suzanne,

      Welcome to the TSFC Forum! Our Forum members rarely if ever use the style of abbreviations to which you are accustomed. Perhaps because some of the associated disorders we sometimes see involve difficulty in reading.

      For the benefit of our members would you use the full words?

      Feel free to join in any ongoing discussion of start as many as you wish.

      Hope you find our Forum helpful.
      Steve
      TouretteLinks Forum

      Comment


      • #4
        New here;Mum from the Niagara region

        Hi Su

        Welcome to our forum. We have lots of great people who pop online regularly to share a story or ask a question... I hope you make this a regular place to visit. Your knowledge and experience with living with Bi-polar may prove to be a real asset to this bb. Hope you join in again

        talk soon
        Janet

        TSFC Homepage

        Comment


        • #5
          New here;Mum from the Niagara region

          Hi Su

          Welcome to the TSFC forum and I am glad you popped in.

          Although you seem to have your hands full it sounds like you are handling it well.

          I've been through the stage you are going through with the kicking, screaming and it can rattle your nerves and make you feel like you need to dissolve into the pavement after it is over.

          I also learned from my experiences with my son that the "Joan Clever" front only feeds the response. I learned in my case to hold strong and show disapproval of the behavior calmly in tone and walk. The fire works will stop after he clues in that no one is happy with it including you.

          It is funny how the drama and melt downs can cause such havoc in the household, especially in the morning but if you hold strong they will subside as the boys mature and learn how to handle emotions better.

          We have some interesting posts about melt downs and rage attacks on the forum.

          I hope you can visit often and there are others here in your same position so I hope you don't feel alone.
          PJK

          Comment


          • #6
            New here;Mum from the Niagara region

            Hi! I hope now that it's June, things have settled down a bit? ;)

            Sounds like you have your hands full!! I hope you find some help in these forums.

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