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195Re: [Parenting Children with Moyamoya] (unknown)

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  • LONNIE NORMAN
    Aug 1, 2003
    • 0 Attachment
      no just moya moya we are checking into other doctors. How young was your daughter when diagonsed





      dareinhart@... wrote:Lonnie, I am so sorry to hear about the difficulties
      you and your daughter have faced. I would strongly
      urge you to seek another opinion on your daughter.
      Does she have another disease/syndrome besides
      moyamoya? I have never heard of a 10 year life span.
      In fact, I was told that moyamoya is not usually
      fatal. My daughter is 11, she had surgery at 6.

      In terms of progress from the strokes, children's
      brains continue to rewire until at least the age of
      14, maybe longer in some cases. Is your daughter
      receiving therapies? While the stroke damage cannot be
      repaired, I would think your daughter would still
      benefit from therapies, especially if she's already
      done something -- i.e. talk -- that the doctors said
      she would never do.

      Keep fighting. Denyse

      --- LONNIE NORMAN <lnorman88@...> wrote:
      > Hello,
      > I have a six year old daughter who was diagnosed
      > with moya moya when she was 11months old they did
      > the EDA surgery on her and she had a massive stroke.
      > which she slowly recovered from then when she was 3
      > years old they did the other side of the brain. She
      > had another massive stroke and the doctors say she
      > would never speak again however they were wrong she
      > can talk but not like a normal 6 year old. Now
      > there is nothing the doctors say they can do. We
      > are wanting to know if someone has more information
      > on this disease and can give us some light into the
      > subject.. Thursday our neurologist told us the
      > lifespan for a small child is usually only up to
      > 10years. Does anyone know different. Is there any
      > hope out there for our Samantha?
      >
      >
      > ---------------------------------
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      > [Non-text portions of this message have been
      > removed]
      >
      >


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