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Re: [Parenting Children with Moyamoya] Digest Number 71

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  • pmteet@cs.com
    HI!! THAT IS our case!!! I can NOT believe that they would want to WAIT!! Oh my goodness. I am glad to hear you have written to doctor Scott. Two of my 3 kids
    Message 1 of 1 , Sep 8, 2003
      HI!!

      THAT IS our case!!! I can NOT believe that they would want to WAIT!! Oh my
      goodness. I am glad to hear you have written to doctor Scott.

      Two of my 3 kids have NF1 as do I. My middle child has Moya Moya and was
      diagnoses at 2 1/2 after 3 strokes. I wish we had had a preliminary MRI maybe she
      would have been spared the strokes. All four of the carotid arteries are
      affected.


      The moya moya has also effected her kidney's arteries. So I would make sure
      your child does NOT have high blood pressure. High blood pressure is common in
      NF but make sure that you make them check it.

      Cheyenne is doing fine now 5 years after her surgeries. SHe is still in
      danger of losing her other kidney. We just got back an hour ago from having the
      little ones MRA's done. Hopefully it will be good news.


      Good luck feel free to e-mail me

      Michelle


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      No one can make you feel inferior with out your permission--- Eleanor
      Roosevelt





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