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Re: [Parenting Children with Moyamoya] Samantha

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  • Ginny McCarthy
    Hi Laurie -- I saw your recent posts. I am so happy that things worked out for Samantha. My son is also 7 and was diagnosed with moyamoya back in May 2003.
    Message 1 of 2 , Aug 25, 2005
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      Hi Laurie -- I saw your recent posts. I am so happy that things worked out
      for Samantha.

      My son is also 7 and was diagnosed with moyamoya back in May 2003. We live
      right outside Boston and were blessed to find Dr. Scott so soon after his
      first TIA.

      Will has that "tingling" that you mentioned -- he had frequent episode
      following the surgeries but they are finally [and hopefully] tapering off
      now. He is most vulnerable when he cries or otherwise hyperventilates.

      I didn't have to deal with the PE issue so soon since Will was in
      Kindergarten for the surgeries and there was no PE. I did talk to Dr. Scott
      about limitations -- and -- he was and is okay with Will participating in
      physical activities [including recess on the playground.] . His continued
      advice is that he shouldn't get overheated and should be well hydrated. I
      only wish he suggested more limitations -- it would make me feel better.
      :-)))

      Will plays soccer, baseball and just got his purple belt in karate. He is
      going into 2nd grade soon. He will have a water bottle at his desk again
      this year and the teachers know to encourage him to drink,drink, drink. The
      school nurse is also aware of the issues. I leave a bottle of Motrin at
      school with instructions to give it to Will if he complains of any kind of
      headache.

      Ginny
    • Laurie Park
      Hi Ginny, Thank you so much for answering my questions about activities. I just want to put her in a bubble for about a year until those arteries have a good
      Message 2 of 2 , Aug 26, 2005
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        Hi Ginny,
        Thank you so much for answering my questions about activities. I just want to put her in a bubble for about a year until those arteries have a good chance to grow, but I know that's not realistic! It makes me feel better to know that other kids are active and doing just fine. I'll still be a little on the cautious side for a bit since she's only a month post surgery, but I'll be more relaxed about things as time goes on.

        Hope Will enjoys second grade!
        Laurie

        Ginny McCarthy <vamcc@...> wrote:
        Hi Laurie -- I saw your recent posts. I am so happy that things worked out
        for Samantha.

        My son is also 7 and was diagnosed with moyamoya back in May 2003. We live
        right outside Boston and were blessed to find Dr. Scott so soon after his
        first TIA.

        Will has that "tingling" that you mentioned -- he had frequent episode
        following the surgeries but they are finally [and hopefully] tapering off
        now. He is most vulnerable when he cries or otherwise hyperventilates.

        I didn't have to deal with the PE issue so soon since Will was in
        Kindergarten for the surgeries and there was no PE. I did talk to Dr. Scott
        about limitations -- and -- he was and is okay with Will participating in
        physical activities [including recess on the playground.] . His continued
        advice is that he shouldn't get overheated and should be well hydrated. I
        only wish he suggested more limitations -- it would make me feel better.
        :-)))

        Will plays soccer, baseball and just got his purple belt in karate. He is
        going into 2nd grade soon. He will have a water bottle at his desk again
        this year and the teachers know to encourage him to drink,drink, drink. The
        school nurse is also aware of the issues. I leave a bottle of Motrin at
        school with instructions to give it to Will if he complains of any kind of
        headache.

        Ginny



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