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  • mikeiz12
    Hi everyone. Thank you all for being so forthcoming. I was so excited to find this site. I read the last 65 messages. I am so thirsty for information. My son
    Message 1 of 2 , May 9, 2002
      Hi everyone. Thank you all for being so forthcoming. I was so
      excited to find this site. I read the last 65 messages. I am so
      thirsty for information. My son Charlie, 13 months, was just
      diagnosed with mm after suffering a stroke in March 2002. He was
      diagnosed with Neurofibromatosis in December but the stroke came as a
      huge suprise. I thought he was teething.

      I live outside Boston; we are being followed by Dr. Scott. He has
      recently recommended surgery to the left side of Charlie's brain
      which is the only effected side as of yet. It is encouraging to hear
      what nice things you all say about Dr. Scott-his reputation makes it
      difficult to find a second opinion. Dr. Scott suggested Dr.
      Steinberg at Stamford. Has anyone ever seen him? I didn't notice
      his name on the mm info page. We are waiting for his comments on
      Charlie's mri and angiogram (is that a mra?)
      I feel like I am still in crisis mode-no time for feelings. Sorry if
      this sounds cold.

      I would appreciate any suggestions.

      thank you, sheila
    • leilei543
      Hi Sheila and welcome to Parenting Children with Moyamoya, I am sorry to hear that your son has suffered a stroke so young but the good news is that you are
      Message 2 of 2 , May 17, 2002
        Hi Sheila and welcome to Parenting Children with Moyamoya,
        I am sorry to hear that your son has suffered a stroke so young
        but the good news is that you are working with Dr. Scott and from my
        experience and from all of the comments I have heard from other
        parents I would say that he is one of the best out there. I have not
        heard of the doctor at Stamford, however I do know that Dr. Scott has
        traveled around the country teaching other neurologists his technique
        and would have to trust that if Dr. Scott recommended him he is
        definitely qualified.
        Although, my son was 5 when he was diagnosed and had his surgery
        I can truly understand your sense of urgency and fear but can tell
        you that children recover amazingly faster than adults. When my son
        was @ Children's in Boston I met a woman whose daughter was diagnosed
        around 1 year and had her surgery by 18 months and she told me that
        her daughter was up and about by the second day. My son only had
        surgery on one side (like your son the other side has not be
        affected) and so far so good. He was having serious headaches and
        TIA's on a regular basis and I would say over the last three months
        they have reduced to 0 TIA's and maybe a slight headache 1 time a
        month if that. Pray and have faith...
        Feel free to email me Leilei543@...

        -Leigh

        --- In parentingchildrenwithmoyamoya@y..., "mikeiz12" <mikeiz12@y...>
        wrote:
        > Hi everyone. Thank you all for being so forthcoming. I was so
        > excited to find this site. I read the last 65 messages. I am so
        > thirsty for information. My son Charlie, 13 months, was just
        > diagnosed with mm after suffering a stroke in March 2002. He was
        > diagnosed with Neurofibromatosis in December but the stroke came as
        a
        > huge suprise. I thought he was teething.
        >
        > I live outside Boston; we are being followed by Dr. Scott. He has
        > recently recommended surgery to the left side of Charlie's brain
        > which is the only effected side as of yet. It is encouraging to
        hear
        > what nice things you all say about Dr. Scott-his reputation makes
        it
        > difficult to find a second opinion. Dr. Scott suggested Dr.
        > Steinberg at Stamford. Has anyone ever seen him? I didn't notice
        > his name on the mm info page. We are waiting for his comments on
        > Charlie's mri and angiogram (is that a mra?)
        > I feel like I am still in crisis mode-no time for feelings. Sorry
        if
        > this sounds cold.
        >
        > I would appreciate any suggestions.
        >
        > thank you, sheila
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