AOSupport

Hello there, happy to have stumbled upon this site.

Our oldest son Collin (31 months old) has AOS. He has a large patch of ACC right on top of his head running over the sagittal area. He also has fused toes/short toes/missing toenails, and a little brother who is 1.5 and has bigger feet than his big brother already.

Collin had his third Cat Scan yesterday and we found that his underlying large skull defect has closed completely. Oddly though, the sagittal suture has also completely fused prematurely. There is a good deal of information about scaphocephaly in infants, but nothing about it happening at age 2. Does anyone have any experience with this? Our doctors told us we just need to monitor his skull growth, the pressure on his brain, and to watch for headaches, seizures, trouble with vision etc. Especially as he hits puberty.  Not very reassuring.