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catching up

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  • djkrn2000
    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
    Message 1 of 8 , Oct 16, 2002
      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
    • dareinhart@yahoo.com
      ... 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
      Message 2 of 8 , Oct 16, 2002
        --- djkrn2000 <no_reply@yahoogroups.com> 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


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      • chbrigger
        Deb - I am not sure if there is a statistic on how often Moyamoya is found in siblings. Unfortunately in our family we have two children with Moyamoya and one
        Message 3 of 8 , Oct 17, 2002
          Deb -

          I am not sure if there is a statistic on how often Moyamoya is found
          in siblings. Unfortunately in our family we have two children with
          Moyamoya and one without. I too still watch my older daughter like a
          hawk and we even had her get an MRI/MRA after our son was diagnosed,
          just to rule it out. Sometimes I think I would feel better if she
          received them yearly like her siblings. Just for my own piece of
          mind. I do know that when our son was diagnosed after his younger
          sister, Dr. Scott said it is extremely rare and he has only a few
          families like us.

          On a happy note, we celebrated Erik's two years since surgery with a
          cake that he picked out yesterday. It is our yearly tradition with
          both kids to have cake on that anniversary. Erik gets two a year, he
          had each side done seperately about 6 months apart. We stop to
          realize how lucky we are and thankful to all be together and have
          everyone doing so well, and to be thankful for our wonderful doctor,
          Dr. Scott, who Erik and Katie like to call the Greatest Doctor in the
          World.

          Hope everyone is doing well. Would love to chat sometime,
          unfortunately this Friday I signed up for a prayer vigil at church at
          9:30. Maybe next week.

          Heather
        • 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 4 of 8 , Oct 17, 2002
            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 5 of 8 , Oct 17, 2002
              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 6 of 8 , Oct 18, 2002
                --- 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

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              • 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 7 of 8 , Oct 18, 2002
                  --- 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 8 of 8 , Oct 18, 2002
                    --- 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
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