Loading ...
Sorry, an error occurred while loading the content.

Re: Later trouble

Expand Messages
  • chbrigger
    Long story....Katie our youngest suffered a stroke at 2 1/2 years, at that time she was diagnosed by a Pediatric Neurologist following an MRI/MRI. About 4
    Message 1 of 8 , Oct 17, 2002
    • 0 Attachment
      Long story....Katie our youngest suffered a stroke at 2 1/2 years, at
      that time she was diagnosed by a Pediatric Neurologist following an
      MRI/MRI. About 4 months after she had surgery our son Erik had a
      TIA. We realized right away what we thought it was and it was
      confirmed with a MRI/MRA also. If you have any other questions let
      me know. Heather

      --- In parentingchildrenwithmoyamoya@y..., harmonmandy
      <no_reply@y...> wrote:
      > I was wondering how each of you found out your child had moya moya-
      > just interested in the stories. Also have any of you had a child
      > later have a fall that caused a subdural hematoma (bleeding on the
      > brain)? Just curious.
      >
      > We are 2 years since our first surgery and 1 1/2 since our second.
      > Thanks Mandy
    • dareinhart@yahoo.com
      ... My daughter started having TIAs. We didn t know what they were at the time. Her pediatrician ordered an EEG and it came back abnormal, but they didn t
      Message 2 of 8 , Oct 18, 2002
      • 0 Attachment
        --- harmonmandy <no_reply@yahoogroups.com> wrote:
        > I was wondering how each of you found out your
        > child had moya moya-
        > just interested in the stories. Also have any of you
        > had a child
        > later have a fall that caused a subdural hematoma
        > (bleeding on the
        > brain)? Just curious.
        >
        > We are 2 years since our first surgery and 1 1/2
        > since our second.
        > Thanks Mandy
        >
        >
        My daughter started having TIAs. We didn't know what
        they were at the time. Her pediatrician ordered an
        EEG and it came back abnormal, but they didn't know
        why. We went to see a neurologist. Any time Maddie
        hyperventilated she would have a TIA so the
        neurologist had her breath deeply and in about 60
        seconds she couldn't walk. He ordered an MRI but it
        didn't show any thing. Then we went to see two
        neurologists at Johns Hopkins. They diagnosed Maddie
        with a migraine varient. Wrong diagnosis, but they
        put her on an aspirin a day, and I think that's why
        she didn't have a major stroke -- although she has had
        several smaller strokes on both sides of her brain.

        Things were getting worse so we went to yet another
        neurologist at Yale and she diagnosed my daughter with
        a seizure disorder. She was having seizures at this
        point. She ordered an MRI/MRA and that's when we
        found out about the moyamoya. It took 9 months of
        looking for an answer, with Maddie getting
        progressively worse.

        We went to Boston Children's for surgery in February
        1999.

        Maddie fell off the "big toy" at school and got a
        large goose egg on her head, but it went away just
        like any kid's would. I did take her to the doctor
        just in case. I don't really live in fear of her
        falling anymore, but when I watch her sleep and she
        twitches or looks funny I worry that she's going to
        have a seizure or another stroke. I don't know how
        not to worry, but I don't let it get in the way of her
        leading a normal life.

        Denyse

        __________________________________________________
        Do you Yahoo!?
        Faith Hill - Exclusive Performances, Videos & More
        http://faith.yahoo.com
      • djkrn2000
        ... Mandy- We found out about Geoff s moyamoya on January 21, 2000. He bagan having TIA s in September or October of 99, but at first it was just assumed to
        Message 3 of 8 , Oct 18, 2002
        • 0 Attachment
          --- In parentingchildrenwithmoyamoya@y..., harmonmandy
          <no_reply@y...> wrote:
          > I was wondering how each of you found out your child had moya moya-
          > just interested in the stories. Also have any of you had a child
          > later have a fall that caused a subdural hematoma (bleeding on the
          > brain)? Just curious.
          >
          > We are 2 years since our first surgery and 1 1/2 since our second.
          > Thanks Mandy

          Mandy-

          We found out about Geoff's moyamoya on January 21, 2000. He bagan
          having TIA"s in September or October of '99, but at first it was just
          assumed to be related to Mono which he also had at the time, as the
          TIA's continued to worsen in severity, and frequency, we continued to
          search for an answer, and as a nurse, I was getting more worried all
          the time. His symptoms were'nt clear cut TIA's, at first. He
          started by passing out, the numbness, weakness and tingling came
          later. After ct scans, eegs, x rays, etc, finally on January 21, and
          MRi/MrA diagnosed it and we were then on a search for a surgeon we
          were comfortable with. Dr. Scott was not available for quite a
          while, and we were referred to Dr. Jodi Smith in Indianapolis,
          Indiana,and she had us in her office by January 30. Once the workup
          was done, it was clear that he needed surgery and he needed it soon,
          so th first surgery was on Feb. 5, and the 2nd on the 9th. Both sides
          were equally bad and both severe and she didn't feel comfortable
          waiting the usual time between surgeries. He came through both
          without a problem and did not suffer a stroke. We count our
          blessings everyday. And thank God for Dr. Smith(who was trained by
          Dr. Scott, by the way.) We will celebrate 2 years in February.

          Deb
        • djkrn2000
          ... Thanks for the answers. I too even become paranoid at times about myself. I have migraines and it makes me worry. I watch my kids always. And Geoff
          Message 4 of 8 , Oct 18, 2002
          • 0 Attachment
            --- In parentingchildrenwithmoyamoya@y..., <dareinhart@y...> wrote:
            > --- djkrn2000 <no_reply@y...> wrote:
            > > Just a quick note...things are status quo
            > > here....for once since the
            > > surgeries two years ago. I think the medical bills
            > > will be under
            > > control finally within the month. Whew!!!!
            > >
            > > Geoff is doing much better in school this year,
            > > passing all classes
            > > with b's except for history....seems to be a
            > > recurring theme. Failing
            > > history. He has his 2 year follow-up MRI/MRA and
            > > angiogram in
            > > February. Last year things were great.
            > >
            >
            >
            > > Thanks for everyone's support. I keep trying to make
            > > it to the chat.
            > > I'm sure there are so many more things to talk
            > > about.
            > >
            > > I am still watching my other two children like a
            > > hawk. Does anyone
            > > one know how often more than one child in a family
            > > are affected?
            > >
            > > Deb
            > >
            > > Deb, I'm happy to see that Geoff is doing so well.
            > My daughter has made steady improvement each school
            > year. I'm hoping that by high school she'll have
            > caught up. Her main problem is with reading. Her
            > eyes don't naturally follow the words so it's very
            > challenging for her. She really needs to use a
            > straight edge or her finger, but she doesn't like to
            > do that. She also has word retrieval problems that
            > the school speech therapist is working on with her.
            >
            > Sometimes siblings also have moyamoya, but it's rare.
            > When I get really paranoid I worry that I have it!!!
            > I don't worry so much about my older daughter, because
            > she has never had any of the symptons my younger
            > daughter had/has.
            >
            > Denyse
            >
            > Denyse-

            Thanks for the answers. I too even become paranoid at times about
            myself. I have migraines and it makes me worry. I watch my kids
            always. And Geoff insists on doing things normal kids do,(with a
            helmet when warranted,) so that makes me nervous, but as he told
            me, " If i made through all of that surgery just to be miserable, it
            wouldn't have been worth it to me." He has a point, so I grin and
            bear it, and pray alot. :)

            Deb
            > __________________________________________________
            > Do you Yahoo!?
            > Faith Hill - Exclusive Performances, Videos & More
            > http://faith.yahoo.com
          Your message has been successfully submitted and would be delivered to recipients shortly.