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?

I'm so sorry to hear of your son's strokes and diagnosis.  My son who has moyamoya is a teen so I can't help you much.  I do understand the fear and stress and worry while waiting.  We did our best to keep stress down and he didn't exert himself---much easier to do with a teen than a baby.

I will pray for you, your wife and your son.  Please keep us updated on how your son is doing.

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

Lynn and Dawn,

Thank you so much for the insight and tips. We have had 3 radiologists and 4 neurologists confirm the diagnosis - that was the big part for me - to confirm what we are facing. We have a good support group with family and friends and have been trying to document all our questions up until this point. May I ask Dawn, why would a second surgery be required?

Ted Sr.

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

Sorry Ted....I should have said that approx 18,mos to 2 yrs after first surgery, my daughter developed symptoms again and MRI/CVR showed progession and they did a second surgery on the opposite side which was quite extensive to get to the PCA too...not sure if you are in the States?we are in Canada...our surgeon perhaps not experienced as some in the States but he was amazing.

Dawn

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.