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Re: [Parenting Children with Moyamoya] Hello,Daughter 20

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  • ernestcatino
    Thank you for your response. I will be suggesting the Diamox to the neurologist. My daughter continues to experience spells of temporary hand and leg
    Message 1 of 3 , Oct 19, 2003
      Thank you for your response. I will be suggesting the Diamox to the
      neurologist. My daughter continues to experience spells of temporary
      hand and leg weakness/numbness with some trouble breathing and
      dizziness. I will also try emailing Scott. I believe he local
      neurologist is very sincere and concerned but a bit of a loss.

      --- In parentingchildrenwithmoyamoya@yahoogroups.com,
      <dareinhart@y...> wrote:
      > Headaches can be a real problem with moyamoya. My
      > daughter had awful headaches following surgery. Her
      > neurologist put her on 250 mgs of diamox. It is a
      > fairly benign drug (we were told) that attaches oxygen
      > molecules to the blood stream. People use it when
      > they are going to be in the mountains if they get
      > altitude sickness. It worked for my daughter and
      > after a few months we were able to take her off of it.
      > She still will get bad headaches once in a while, but
      > not like she had before. If the diamox hadn't worked,
      > her neurologist was going to try calcium channel
      > blockers next. She believed that the headaches were
      > related to blood flow so that traditional pain
      > killers/migraine meds would not help.
      > You didn't say how well your daughter did following
      > surgery, or if she had any strokes before and/or
      > after. It is my understanding that continued strokes
      > are what effect a moyamoya patient's future. In other
      > words, my daughter has had no new strokes since
      > surgery, and so we are very optimistic about her
      > future.
      > I would suggest seeing a neurologist in Philadelphia
      > and/or New York City who has experience with treating
      > moyamoya. The last thing your daughter needs is a
      > doctor who makes her feel worse. You could also
      > e-mail Dr. Scott, he is very good about answering
      > e-mails. We go back to see him once a year for follow
      > up, and it is well worth the trip to Boston.
      > Fyi, there's a mom I've corresponded with on another
      > bulletin board whose daughter was 19 when diagnosed
      > with moyamoya. She had successful surgery and didn't
      > find out until after surgery that she was pregnant.
      > This mom is now a grandmom and the last time I
      > corresponded with her both her daughter and
      > granddaughter were doing fine.
      > Denyse
      > --- ernestcatino <ernestcatino@y...> wrote:
      > > Hello, we are a family in Eastern Pa and my adopted
      > > Korean daughter
      > > was diagnosed with MoyaMoya last summer. She was 19
      > > at the time and
      > > started with numbness in her left hand and some
      > > minor speech
      > > problems. Our GP was clueless and through my wife's
      > > insistence we met
      > > with a local neurologist who was old school but was
      > > very thorough and
      > > would not accept any diagnosis unless he was
      > > completely satisfied
      > > with it.He diagnosed her with MoyaMoya. She has had
      > > surgery with Dr
      > > Scott in January and has had persistent headaches
      > > since then. Her new
      > > nuerologist in Hershey,PA(the original DR has
      > > retired)is very caring
      > > but unsure on how to proceed. Earlier this week, he
      > > has not given my
      > > daughter a very positive view of her future. So this
      > > is why I am on
      > > the net looking for some info and encouragement.
      > > Thank you
      > >
      > >
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