- 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