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  • jeffreyharpp
    My name is Jeffrey Harpp. On Dec 21, 2006 our lives changed like many of you. Our 7 month old son Cash had a stroke. He was a perfect, healthy baby until
    Message 1 of 3 , Jan 15, 2007
      My name is Jeffrey Harpp. On Dec 21, 2006 our lives changed like many
      of you. Our 7 month old son Cash had a stroke. He was a perfect,
      healthy baby until his stroke. We live in nw indiana and took our son
      to University of Chicago Comer's Children's Hospital. Dr. David Frim
      diagnosed Cash with moyamoya. He has limited function in his right
      side of his body, he can move his right leg and arm sometimes and
      doesn't move his hand or wrist at all. We were in ICU for about
      thirteen days over the holiday's sucky for Cash to spend his first
      Christmas. Cash will be having surgery this monday Jan.22nd. Is there
      anyone else who has a child with moyamoya and has anyone had surgery
      done by Dr David Frim? My wife and I are looking for someone to speak
      to in our area who has gone through this and what to expect long term.
      Thank you for getting back with us.
    • kevin_c86
      Our daughter Juliana also has Moya Moya disease. Juliana is seen at Children s Hospital of Philadelphia for her condition. Philadelphia and Boston have the
      Message 2 of 3 , Jan 15, 2007
        Our daughter Juliana also has Moya Moya disease. Juliana is seen at
        Children's Hospital of Philadelphia for her condition. Philadelphia
        and Boston have the best Children's Hospitals in the world. Even
        though we live very close to Philadelphia we choose to take our
        daughter to Boston instead. After interviewing the Doctors we did not
        feel that they had the experiance with this surgery. Dr Scott has done
        more surgeries on pediatric Moya Moya then anyone. Before getting
        surgery in Chicago I would find out how many of the exact same
        surgeries this Doctor has done. I would also send films to Dr Scotts
        office for his review. The people that work there are truly
        exceptional people and are very helpful.
      • Kevin Cave
        Hi Amanda, Juliana is now 5, she had the surgery when she was 4. June was the 1 year anniversary of her operation her last MRI showed she was responsive to
        Message 3 of 3 , Jan 17, 2007
          Hi Amanda,

          Juliana is now 5, she had the surgery when she was 4. June was the 1 year anniversary of her operation her last MRI showed she was responsive to the operation and has some positive development. Hope all goes well with your son, let me know his name so we can say a prayer.

          "mandyz94@..." <mandyz94@...> wrote:
          Hi my name is Amanda our son was seen at Childrens Hospital in
          Philadelphia also.. He will be 4 months old and was diagnosed with
          possible MoyaMoya. We are leaving for Boston to see Dr Scott on Thurs.
          He will receive his angiogram on Friday. How old is juliana and how is
          she doing??


          --- In parentingchildrenwithmoyamoya@yahoogroups.com, "kevin_c86"
          wrote:
          >
          > Our daughter Juliana also has Moya Moya disease. Juliana is seen at
          > Children's Hospital of Philadelphia for her condition. Philadelphia
          > and Boston have the best Children's Hospitals in the world. Even
          > though we live very close to Philadelphia we choose to take our
          > daughter to Boston instead. After interviewing the Doctors we did
          not
          > feel that they had the experiance with this surgery. Dr Scott has
          done
          > more surgeries on pediatric Moya Moya then anyone. Before getting
          > surgery in Chicago I would find out how many of the exact same
          > surgeries this Doctor has done. I would also send films to Dr Scotts
          > office for his review. The people that work there are truly
          > exceptional people and are very helpful.
          >





          Best Regards,

          Kevin M. Cave

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