My dd has Saethre-chotzen and as far as we know no cranio, her head is still growing so thats good but they only did x-rays around 5 months to check things out (she's 12 mo now). We saw the geneticists last month and she was really commenting on how dd's hair was growing, something about how the sutures are closing. Were going back at the end of next month, do I need to insist on an MRI/CT or something to make sure everything is ok? I really don't even know what to look for with cranio problems.