x-rays only?

[Satori]

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.

[Lori]

I would ask to see a neurologist. If this doc says the sutures may be closing a scan would tell. Are you going to the ped doc at the end of the month? He or she can send you to a neuro doc to get it checked out in light of this docs comments, however I do not see what the hair growth has to do with it. Check out some of the pictures and stories on this site, and best of luck to you single mom!

[jenniferh]

Satori, I love your pic. I'm not a doctor, so I can't answer your question fully. I do know that we had an appointment yesterday with a craniofacial surgeon and after seeing my daughter said that he wouldn't have ordered x-rays or a CT scan because he could tell just by looking at her that she had sagittal synostosis. Things may be different for your daughter. On the other hand, through this whole journey the one thing that I have learned is to always follow what your feeling. If you think your daughter needs a CT scan, then go with it. You truly do know what is best for your daughter. Don't question yourself :) Hope that helps.