My wife and I have received the diagnosis for our 10 month old Son today. Teddy has had several strokes over the past week and they will be looking at completing the surgery in the next week or so. We believe we have received all or most of the information we need. Where do we go from here? Our main concern is worrying about the next several months in which we have to worry about the possibility of strokes.

Does anyone have any tips on what would help us along the way?

Hi Ted,

Sorry to hear about your son. My daughter is 10 now--we are 3yrs post surgery, post stroke...she had 2 surgeries and 2 strokes--is progressing well........
My biggest advice is to write everything down....so you can keep track of info, appts--ask as many questions as you need to, get a second opinion if necessary-be a strong advocate for your child etc. Also, take it a day sometimes an hour at a time......use all your family/friend/social worker/child-life worker resources for support as at times it can be overwhelming, and just LOVE your child through it all. Post surgery, keep your child hydrated and well-rested....stick to routines that work for your child/family.Best of luck and please keep us posted!!! Sending you and yours lots of good wishes!!!
Dawn

Hi Ted,

Why 2nd surgery? My daughter's first moyamoya was for unilateral moyamoya (one side) and my question to the surgeon  was...I know it progresses so let's do both sides. Our surgeon and stroke team thought it was best to do only the side affected. My understanding at the time was, to do the other side when it's not affected yet, may not work as well (rightly or wrongly that was the thought at the time 5 yrs ago). 
My daughter did have a stroke after each surgery....within 12 hrs of the first surgery and 5 days after the 2nd surgery. They are not sure why. My daughter had a blood coagulation disorder too.  Again, it was a stressful time and yes we worried about stroke for quite a while...sometimes still do..........but the kids are amazingly resilient.

any questions, feel free to ask.

Good-luck
Dawn

Dawn, we were told the same thing.  If you do the surgery as a preventative it doesn't work because the brain already has blood flow.  Then later when you need to do it you can't.  sounds like you just have to wait until it progresses enough that the brain is looking for a different blood supply and before it gets too serious.