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

Later trouble

Expand Messages
  • harmonmandy
    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
    Message 1 of 8 , Oct 17, 2002
    • 0 Attachment
      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
    • 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 2 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 3 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 4 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 5 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.