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Re: [Parenting Children with Moyamoya] Question ASAP

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  • pmteet@cs.com
    Thanks, I am going to write to Dr. Scott today. We did not have surgery there but he was VERY helpful. To answer your question YES Chey is on meds. However it
    Message 1 of 5 , Oct 18, 2002
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      Thanks,
      I am going to write to Dr. Scott today. We did not have surgery there but he
      was VERY helpful.
      To answer your question YES Chey is on meds. However it gets a little
      confusing. She also has another genetic disease, that in rare cases causes
      renal problems. My son also has thedisorder but NOT MOYA MOYA. He has renal
      involvement also. SO they are leaning toward it NOT being the moya moya. I
      think it is as her abdominal Aorta is also narrow. But it doesn't really
      matter why it is the way it is as long as they can save it.

      Thanks again. It is nice to have others to speak too. I am a stay at home
      mom and do not really have any friends where I live

      Thanks
      Michelle


      ******************************************************************************

      *******

      No one can make you feel inferior with out your permission--- Eleanor
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      Check out my auction at...
      <A HREF="http://www.stores.ebay.com/justcheyamandas">Just Chey Amanda'seBay Store</A>


      [Non-text portions of this message have been removed]
    • harmonmandy
      ... also has another genetic disorder that is rare with moya moya. Dr. Scott answered all my questions with the anest. when we were going to another hospital.
      Message 2 of 5 , Oct 18, 2002
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        --- What other genetic disorder does your daughter have? My daughter
        also has another genetic disorder that is rare with moya moya. Dr.
        Scott answered all my questions with the anest. when we were going to
        another hospital. He told my what to ask and what to look for. Hope
        he helps you. Mandy








        In parentingchildrenwithmoyamoya@y..., pmteet@c... wrote:
        > Thanks,
        > I am going to write to Dr. Scott today. We did not have surgery
        there but he
        > was VERY helpful.
        > To answer your question YES Chey is on meds. However it gets a
        little
        > confusing. She also has another genetic disease, that in rare
        cases causes
        > renal problems. My son also has thedisorder but NOT MOYA MOYA. He
        has renal
        > involvement also. SO they are leaning toward it NOT being the moya
        moya. I
        > think it is as her abdominal Aorta is also narrow. But it doesn't
        really
        > matter why it is the way it is as long as they can save it.
        >
        > Thanks again. It is nice to have others to speak too. I am a stay
        at home
        > mom and do not really have any friends where I live
        >
        > Thanks
        > Michelle
        >
        >
        >
        **********************************************************************
        ********
        >
        > *******
        >
        > No one can make you feel inferior with out your permission---
        Eleanor
        > Roosevelt
        >
        >
        > Check out my auction at...
        > <A HREF="http://www.stores.ebay.com/justcheyamandas">Just Chey
        Amanda'seBay Store</A>
        >
        >
        > [Non-text portions of this message have been removed]
      • djkrn2000
        ... anything special ... have it done ... week. ... has already ... arterialgram ... already had ... Our 14 year old son had 2 surgeries, two years ago and we
        Message 3 of 5 , Oct 18, 2002
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          --- In parentingchildrenwithmoyamoya@y..., pmteet@c... wrote:
          >
          >
          > Just wondering what everyone was told about anesthesia? If
          anything special
          > should be done will they have tests/surgery. Chey hasn't Had to
          have it done
          > for 2 years so I want to refresh my memory. She is going in next
          week.
          > Iam kinda new so I will give a brief update.
          > She has a lot of problems. She has renal(kidney) involvement and
          has already
          > lost one kidney. The other artery is bad. So they are doing the
          arterialgram
          > to see how bad it is and what the next step should be. She has
          already had
          > surgery on it once.
          > Things are not looking good.
          > Thanks in advance
          > Michelle
          >Michelle-

          Our 14 year old son had 2 surgeries, two years ago and we too were
          told if they ever have any kind of anesthesia, there was a specific
          protocol to be followed, and it should be discussed prior to any
          surgery. Our surgeon was trained under Dr. Scott and is Dr. Jodi
          Smith in Indianapolis, Indiana. She too is wonderful. I am concerned
          about my son too because his blood pressure has a tendency to run
          high, although not high enough yet to check into anything else, I am
          concerned about the renal artery involvement too. otherwise, he is
          doing great. Good Luck.

          Deb
          **********************************************************************
          ********
          >
          > *******
          >
          > No one can make you feel inferior with out your permission---
          Eleanor
          > Roosevelt
          >
          >
          > Check out my auction at...
          > <A HREF="http://www.stores.ebay.com/justcheyamandas">Just Chey
          Amanda'seBay Store</A>
          >
          >
          > [Non-text portions of this message have been removed]
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