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68Re: I am new too

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  • leilei543
    May 17 9:17 AM
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      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@...


      --- In parentingchildrenwithmoyamoya@y..., "mikeiz12" <mikeiz12@y...>
      > 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
      > 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
      > what nice things you all say about Dr. Scott-his reputation makes
      > 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
      > this sounds cold.
      > I would appreciate any suggestions.
      > thank you, sheila
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