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Re: [Parenting Children with Moyamoya] My son'd diagnosis of MM

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  • mandy harmon
    Flight angel will help with flights for surgery also small airports have pilots that will fly patients free for medical reasons. Mandy Fly angel does require
    Message 1 of 5 , Mar 25, 2003
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      Flight angel will help with flights for surgery also small airports have
      pilots that will fly patients free for medical reasons. Mandy

      Fly angel does require more of a notice- web searching will find them.







      >From: "oneofakindco" <oneofakindco@...>
      >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
      >To: parentingchildrenwithmoyamoya@yahoogroups.com
      >Subject: [Parenting Children with Moyamoya] My son'd diagnosis of MM
      >Date: Tue, 25 Mar 2003 03:52:31 -0000
      >
      >Hi, I found this site through DJ's site moyamoya.com. My 11-year-old
      >son, Tyler, was recently thought to have Moya Moya. He was born with
      >mild Cerebral Palsy, so when he had a stroke (no TIA's before) the
      >doctors acted like there was nothing wrong with the fact that he
      >couldn't use his left arm. His CP was so mild that noone believed he
      >had it, but the Doctors in the ER didn't know him and wouldn't listen
      >when we told them he has never had a weaknees this severe on one side.
      >He was twitching and very lathargic (excuse my spelling) He twitched
      >for 9 hours before losing the use of his arm and the left side of his
      >face, all the hospital did was start an I.V. and tell us he was just
      >tired from the twitching. After 3 days in the hospital they started
      >wondering if maybe he had had a stroke (WOW what a concept). Anyways,
      >this all happened Dec. 21st to the 24th of 2002.
      >He has since had MRI's and MRA's finally they decided to do an
      >artiogram (spelling?) and still won't say the "MM" word. They just
      >say the test have shown the arteries on the right side of the brain
      >are closed (Duh) and that he has narrowing in the arteries on the
      >left side of the brain, he might need surgery, but he's stable right
      >now so there's no rush (What! My son was at 3 Christmas parties the
      >day before his Stroke and he wasn't stable then?) They say it will be
      >a month or two before they can do the surgery IF he needs it.
      >Needless to say, this single mom is very frustrated and going a
      >little crazy. Right now, I am trying to figure out how I can get him
      >to Boston (we live in CO) because it looks like it's the only way to
      >find him the help he needs.
      >Sorry this is so long. Just a very frustrated mom trying to get any
      >info out there. Rena
      >


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    • Rena
      Mandy, Thank you for the information. Rena mandy harmon wrote:Flight angel will help with flights for surgery also small airports
      Message 2 of 5 , Mar 25, 2003
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        Mandy,
        Thank you for the information.
        Rena
        mandy harmon <HarmonMandy@...> wrote:Flight angel will help with flights for surgery also small airports have
        pilots that will fly patients free for medical reasons. Mandy

        Fly angel does require more of a notice- web searching will find them.







        >From: "oneofakindco" <oneofakindco@...>
        >Reply-To: parentingchildrenwithmoyamoya@yahoogroups.com
        >To: parentingchildrenwithmoyamoya@yahoogroups.com
        >Subject: [Parenting Children with Moyamoya] My son'd diagnosis of MM
        >Date: Tue, 25 Mar 2003 03:52:31 -0000
        >
        >Hi, I found this site through DJ's site moyamoya.com. My 11-year-old
        >son, Tyler, was recently thought to have Moya Moya. He was born with
        >mild Cerebral Palsy, so when he had a stroke (no TIA's before) the
        >doctors acted like there was nothing wrong with the fact that he
        >couldn't use his left arm. His CP was so mild that noone believed he
        >had it, but the Doctors in the ER didn't know him and wouldn't listen
        >when we told them he has never had a weaknees this severe on one side.
        >He was twitching and very lathargic (excuse my spelling) He twitched
        >for 9 hours before losing the use of his arm and the left side of his
        >face, all the hospital did was start an I.V. and tell us he was just
        >tired from the twitching. After 3 days in the hospital they started
        >wondering if maybe he had had a stroke (WOW what a concept). Anyways,
        >this all happened Dec. 21st to the 24th of 2002.
        >He has since had MRI's and MRA's finally they decided to do an
        >artiogram (spelling?) and still won't say the "MM" word. They just
        >say the test have shown the arteries on the right side of the brain
        >are closed (Duh) and that he has narrowing in the arteries on the
        >left side of the brain, he might need surgery, but he's stable right
        >now so there's no rush (What! My son was at 3 Christmas parties the
        >day before his Stroke and he wasn't stable then?) They say it will be
        >a month or two before they can do the surgery IF he needs it.
        >Needless to say, this single mom is very frustrated and going a
        >little crazy. Right now, I am trying to figure out how I can get him
        >to Boston (we live in CO) because it looks like it's the only way to
        >find him the help he needs.
        >Sorry this is so long. Just a very frustrated mom trying to get any
        >info out there. Rena
        >


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      • Rhonda Gasiorowski
        Where is Dr. Steinberg from? Rhonda [Non-text portions of this message have been removed]
        Message 3 of 5 , Mar 25, 2003
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          Where is Dr. Steinberg from? Rhonda

          [Non-text portions of this message have been removed]
        • Rena
          Rhonda, He s in Stanford CA. There is a link to his site and email on www.moyamoya.com if you need anymore info, it s a great site and helped me alot. Rena
          Message 4 of 5 , Mar 25, 2003
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            Rhonda,
            He's in Stanford CA. There is a link to his site and email on www.moyamoya.com if you need anymore info, it's a great site and helped me alot.
            Rena
            Rhonda Gasiorowski <lovemom@...> wrote:Where is Dr. Steinberg from? Rhonda

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


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          • katdogden
            ... www.moyamoya.com if you need anymore info, it s a great site and helped me alot. ... from? Rhonda ... Service. ... desktop! ... I hope all goes well
            Message 5 of 5 , Mar 28, 2003
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              --- In parentingchildrenwithmoyamoya@yahoogroups.com, Rena
              <oneofakindco@y...> wrote:
              >
              > Rhonda,
              > He's in Stanford CA. There is a link to his site and email on
              www.moyamoya.com if you need anymore info, it's a great site and
              helped me alot.
              > Rena
              > Rhonda Gasiorowski <lovemom@w...> wrote:Where is Dr. Steinberg
              from? Rhonda
              >
              > [Non-text portions of this message have been removed]
              >
              >
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              >
              >Hi Rena:
              I hope all goes well with Steinberg. He performed my son's surgeries
              and is just fantastic. Brian is doing very well. We spent almost 6
              weeks at Ronald McDonald HOuse and had incredible support from all
              there. Please give me a holler if you want to talk about Stanford
              and the way everything works............Kathy



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