I hope no one minds me putting this here but a friend of mine started a support forum on the internet for this condition because she couldn't find much info about it herself.
The website is:
http://www.craniokids.org/

Hope it helps someone!

Michal
B - 11 years old and BGBG quads 7 years old

Another good site: http://www.cappskids.org/CAPPSORG.htm

~Melissa mom to Sarah, Ryan, & Emma. Post 26 weekers weighing 1lb 7 oz each. Visit our web sites at: http://www.tracheostomy.com/trachkids/kids17/emma.htm , http://www.gkmom.org