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Re: [Parenting Children with Moyamoya] Mary Grace-Thank you

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  • RGrace5@aol.com
    Danette, Kathleen was diagnosed Jan.2002.She was four yrs. old(almost 5).She had surgeries at Boston Children s Hospital with Dr.Scott in April 2002.(have you
    Message 1 of 2 , Mar 8, 2004
      Danette, Kathleen was diagnosed Jan.2002.She was four yrs. old(almost 5).She
      had surgeries at Boston Children's Hospital with Dr.Scott in April 2002.(have
      you checked out his web site?) He is quite an authority on Moyamoya.He is
      considered one of the best for this surgery.He has patients from all over the
      world.We live about 3 hrs away from Boston (New York)but it was well worth the
      trip he was amazing as was the whole staff at Children's.She had two surgeries
      only days apart, they were to do both sides.He couldn't do both in one
      surgery.She wasn't tolerating it well and they had to stop.Kathleen has been on baby
      asprin since the day she was diagnosed.Is your daughter on asprin? Kathleen
      was born with Down Syndrome,supposedly this is a slightly higher risk group for
      getting Moyamoya. Have the Dr.'s told you about the dangers of dehydration or
      hyperventilation for chilldren with Moyamoya? I hope I've answered everything
      you asked so far.Please ask away anything else.My E-mail is RGrace5@...
      if you want to e-mail direct.
      Mary Grace


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    • RGrace5@aol.com
      Danette, I think you also asked what kinds of questions to ask the surgeon.Probably the biggest question for the neurosurgeon is, have they performed this
      Message 2 of 2 , Mar 8, 2004
        Danette, I think you also asked what kinds of questions to ask the
        surgeon.Probably the biggest question for the neurosurgeon is, have they performed this
        surgery and how many.There aren't many surgeons who have had a great amount of
        experience with this.If they haven't maybe there is another one not too far
        from you.Dr. Scott will also consult with other surgeons about the operation.
        He is a great Dr. and very caring man.Will she need surgery on both sides right
        away?I forgot has she had an angiogram? If I think of anything else I'll
        write it down.
        Mary Grace


        [Non-text portions of this message have been removed]
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