Our 7 year old son was diagnosed with Moyamoya after having two strokes. He had surgery at Children's Hospital Boston on 1/12/2012 by Dr. Scott and Smith.  It went well, but now trying to get rehab, therapy, and dealing with his emotional state. In researching I found an article from 2004 by Dr. Scott and he mentioned a correlation with facial hemangiomas. Our 6 year old daughter was treated for extensive cervicofacial hemangiomas after birth. Today I mentioned this to Dr. Scott and he said we should get an MRI of our daughter. Has anyone had multiple kids with Moyamoya? Anyone with hemangiomas and Moyamoya?

Hi SKO,

Sorry you had to find us but I'm glad we could be here for you!

There are several families that are part of this community that have multiple children/siblings with moyamoya.

There is a group of specialists from the University of Texas at Houston that have done extensive research on the genetics of moyamoya.  Dr. Dianna Milewicz and her team have published several papers in conjunction with institutions such as Stanford University which identify the moyamoya gene(s).  It's now possible to have loved ones tested to see if they are at risk!

Dr. Milewicz will be in Kansas City in June, 2012 for the Moyamoya.com Gathering and will be offering tests for moyamoya patients and their families.  You can read more about her research in this post: http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1325823430

Welcome to the family.  I hope this info helps!

Hang in there...

DJ

Yes my daughter has unilateral moyamoya and had hemangiomas. Her hemangiomas started on her chin, then the inside of her lip, under her tongue and down the back of her throat. They were all on the left side and it was the left side of her brain that was affected by moyamoya. Her neurosurgeon was quite interested in seeing photos.
Good luck with your son. Hope he gets the rehab he needs.
Fingers crossed your daughter will be fine. Please let us know the outcome of the MRI.
Take care.