Tests say ok, but still have concerns

[xl1200c]

Hi everyone. We are new to this, and still have lots to learn. My son is 4 months old. He has a metopic ridge down his forhead and his head comes to a peak in that area. His doctor was concerned so we went for X-ray which did not clearly show if the suture was closed.

Then we went for CAT scan and were told everything was fine. One the one hand its a huge relief, but on the other hand a part of me is still very concerned because his head shape so clearly looks like craniosynostosis.

Does anyone else have experience like this, or know of a reason for head to have cranio shape but no evidence of cranio? I'm just not sure if I should count my blessings and back off or continue to persue. I'm concerned that if there is an issue I would want to deal with it sooner rather than later.

Any input greatly welcomed.

[charliesmummy]

Hiya, a friend of mine has a son with the Metopic ridge and no cranio but he does not have the beaking as your son appears to have. My son Charlie has the same shape head and he deffinately has Metopic cranio. Would it be worth you getting a second opinion? It would be fantastic if your son doesnt have cranio and i hope he doesnt but the head shape is so familiar. Welcome to CranioKids by the way x

[Jennifer]

I'm not a metopic expert. I see something, but it could be nothing. (I know- not so helpful at all!) Who read the CT Scan. I would ensure it was read by a neurosurgeon who handles cranio cases regularly. No offense to the CT techs, but you want the expert of experts to be reading it. If it was a NS and your still not comfortable, get a second opinion- hopefully they also say it's not cranio- if 2 say it's not, that should ease your mind more. Or if the first one can explain why it appears to look so much like cranio?

I should have said it first-- WELCOME! I'm glad you've found us. Even if it ends up not being cranio- I hope we can help. Getting the diagnosis or waiting for one is a very scary time.... :hugg

[Katie]

Welcome to Cranio Kids! What a cutie you have there! i agree with the others, I would seek a second opinion by someone who is knowledgable in craniosynostosis. Was is a neurosurgeon who told you that it wasn't cranio, or was that on the radiology report. If so, did the NS read the report, or actually view the scan? Good luck to you, please keep us updated. I hope your Dr. is right and it's not cranio, but we're all here for you either way :hugg

[xl1200c]

Hi everyone. Thanks for the welcome. So far we have only dealt with his pediatrician. He had planned for us to see a neurosurgeon if the tests results showed cranio. I wishing we had gone to the neuro regardless.

[mom2zach]

If it were me, I think I would ask for a referral to a neurosurgeon anyway - just to put my mind at ease. When my son was 2 weeks old I pointed out that I felt a ridge on the top of his head. My pediatrician said that it could still just be from the birth, but she was going to refer me anyway just to be on the safe side. She wasn't even going to try to diagnose it on her own. In my son's case it did turn out to be cranio (sagittal) - hopefully it wouldn't be in your case - but I always figure it's better to get the second opinion even if it is just to put your mind at ease.