We thought my oldest DS might have it, but after doing a CT scan and MRI it wasn't. It was nerve racking b/c of the surgery involved. Does your DS have it for sure? Good luck with all of it. There are some great resources out there.
One of my Kindergarten students had cranio and surgery as an infant. My DS had plagiocephaly and wore a helmet to correct it, my student's mom gave me this website for information - it has info on both cranio and plagio.
My DS had bicoronal cranio. He had surgery in June at the age of 9 months. You can read my blog (lots of pictures) http://www.babyjwo.blogspot.com/
Also I found the gals on this website incredibly helpful and friendly. A way better place to do research than Google! You can read about their stories and see before and after pics. www.craniokids.org
Where do you live? We are in Seattle and the Children's Hospital Cranio team has been awesome to us. Good luck! And please email me if you want to talk! I was scared when I first found out about my DS's condition. amberellen79 @ yahoo .com