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Just Diagnosed

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  • Steve
    Our 3 1/2 yr old son was just diagnosed with Moyamoya today. One of his docs suspected it last Friday so we have done much research and tried to educate
    Message 1 of 1 , Aug 31, 2004
      Our 3 1/2 yr old son was just diagnosed with Moyamoya today. One of
      his docs suspected it last Friday so we have done much research and
      tried to educate ourselves on it over the past 4 days. His symptoms
      started with left arm limpness on Wed., followed by left foor
      dragging and left mouth sagging on Friday. ER on Friday with xrays,
      CT and MRI ... admitted to the hospital, then followup Monday with
      MRI/MRA and CTA to confirm diagnosis.

      We contacted Dr. Scott in Boston by email and he has already called
      and emailed back with more info. Will be scheduling surgery in
      about 4 to 6 weeks.

      Our son has Down Syndrome, was born addicted to cocaine and has a
      history of SCD (sickle cell) in his bio-family. He has a long
      history of respiratory issues (mostly resolved) and just had his
      trach removed 2 months ago.

      Can anyone give us an idea of what to expect:
      Length of time in Boston
      Pain post-op (he cant communicate very well)
      Recovery time until he regains what he does have
      What does/doesn't insurance cover?

      THis is a lot for a first post, but after reading what some of you
      have been through, hope that you understand.

      Steve & Liz
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