Hi all.  Just joined the group a day or two ago, but this is the first time I could find time to post.  I have four children in total, the younger two twins now 9 years old.  One of the twins, Patrick, has a long medical history.  To sum it up, he has spastic diplegic cerebral palsy and shunted hydrocephalus.  In February he had a couple of seizures for the first time.  Lots of visits to the ER, CT scans, x-rays, EEG, etc. until his neurologist ordered an MRI.  That's when we got the devastating news that he might have Moyamoya, now confirmed from an MRA and cerebral angiogram.  Luckily we live within pretty close driving distance to Children's Hospital Boston, so we are obviously seeing Dr. Smith and Dr. Scott.  His surgery is scheduled for May 6.  He has Moyamoya on both sides, but interestingly, we found out from his angiogram that he already has a whole new network of blood vessels on the right side (the side that shows 2 strokes, and is also the side with the shunt), so I'm not sure what they will do now.

Anyway, glad to find a group I can talk to!

Wow, that's a lot to handle! I have a son with Down Syndrome, and Autism and just diagnosed with Moyamoya.

It's great that you are so close to Children's Hospital in Boston. I have read nothing but great things about the hospital and doctors. Hopefully, I will also be travelling there from Philadelphia to have them treat my son.

Good luck and best wishes to your son and family. He will be in great hands from what I hear.

Karen

Patricksmom,

Thinking of you today as your son has his surgery.  He will be in my prayers, as will you & your family.

Best regards,

Jennifer