hi brittie--check your messages.

I forgot to ask if she had surgery on both sides? I was told that w/ true MM, both sides are generally affected. and I know this is certainly no consolation, but my son STILL has headaches: mild ones every day, occasional migraines, but if he takes Depakote, he doesn't have the migraines. this 17 yrs post stroke/surgeries.

I wish y'all all the best! Give your daughter a hug for me
Have you seen the videos of Dr. Diane Milliwicz on YouTube? She is heading research being done at the Univ of Tx Health Science Ctr that is trying to determine if there is a genetic cause for MM as well as other vascular disorders (there seems to be a connection). If you haven't, I highly recommend it.  each of the 5 videos are only about 20 min long so you can watch a little or all. I believe this website has a link, but you can just search for her on YouTube.com. Their work is showing progress and hope!

My six year old also has Moyamoya. She had surgery on both sides in September of 2013, shortly after she was diagnosed. She had a stroke right after the surgery but now, five months later, has regained much of what she lost. We were doing really really well, but lately she's had some symptoms again and it's discouraging. Trying to stay positive, but some days it's just so hard. I find it especially difficult not knowing what the triggers are. What causes the headaches. What we should be avoiding. But most of our days are lovely, and I'm trying to keep my mind there rather than letting it go to the dark side. Hugs to you all.

Hi, Jane
so glad you found this site. there is so much info here. as one mom to another with this experience, I know  how scary it is.
you don't mention what has been affected (paralysis, speech, cognitive issues), but know that the fact that he is so young, but has most likely already developed his major skills (gross motor, fine motor, speech, etc), with good therapy (re-training), he should be able to regain most of those skills. my son was dx'd after a major stroke at the age of 3 1/2 yr, had paralysis on the upper rt side (his dominant side at the time), loss of speech.  his speech return was very good w/in 6 mo. and he moved out of ST after 2 1/2 yrs. He had been very active, athletically before the stroke and was still interested in sports, so swimming, soccer, baseball, golf, tennis were activities we engaged him in along with his PT & occupational therapy.  The fine motor skills for him were the hardest to regain, but by the end of 6th grade, he moved out of education assistance. He completed his Eagle Scout rank & is now a Jr. in a highly acclaimed Tx univ. studying Exercise Physiology.  He doesn't type with both hands, but who does these days?  He manages just fine.
One thing I will mention is to ask your neurologist/surgeon what area of the brain was affected and what things should you look for that may be affected but would not be obvious.  We found out in 1st gr that b/c the language center had been an area affected, he was having much difficulty reading even though he was above avg intelligence & knew all his phonics sounds.  With special attention to reading, he was able to overcome this, but it would have been easier had it been caught beforehand.
another thing to discuss w/ Dr's is the effect the reduced blood flow may have had on internal organs and what to watch for.  My son's arms/legs were only slightly smaller on the affected side than the other, but when he was 13 it was discovered that his kidney on the rt side was also smaller, thus causing an abnormal release of renin that controls blood pressure (his was too high). this was controlled by meds, not sure if there could have been anything to prevent it, but something  that should be monitored (BP).  In addition, anyone with any type of brain injury is prone to issues with attention, so request suggestions for help with this as well.
hope this helps. I'll monitor replies to this so if you have any other concerns, don't hesitate to write. For me, my faith that God is in control got me thru it all -continues to - we moms never stop worrying.  I wish my son had not had to go thru all this, but I will say there is very little he was not able to do that any other normal boy did. Lots of his peers went thru ST and reading help.  In hindsight, the one thing I wish I had done was held him back a year in starting school and gotten more private tutoring for him rather than relying on the public school assistance.
God blesss you all.
sue