Anyone's LO have craniostynosis?

KRT · September 2011

Just curious if anyone's LO has or had this? I am concerned my 9 month old son may have it.

Maywed05 · September 2011

My son does. He was diagnosed at about a month old and had surgery at 5 months. What makes you think your DS has it?

KRT · September 2011

Just as some background, DD had plagiocephaly and wore a DOC Band for 12 weeks. Due to the literature we got when she was an infant I was familiar with craniostynosis. Fast foward to now....

This past weekend, DH rubbed DS's head and then asked me to come check out his skull. I rubbed my hand over his head and felt a ridge. I was surprised by it and have no idea how long it has been there. I am assuming this is new since his 6 month appt as the pedi didnt' mention it. The ridge starts at the top of his forehead at his hairline and runs back to his soft spot. He still has his soft spot and it is not bulging. The ridge does not run down his forehead so it doesn't seem to be a metopic ridge and his head shape looks fine to me. I made the HUGE mistake of googling this and what I found was of course quite scary. I had one of my friends who is a mom of 2 feel it lat night and she freaked when she felt it, which also didn't help.

We have his 9 month appt tonight and it is definitely on my list of things to ask about.

wellfleet04 · September 2011

My son has/had the exact same ridge you are concerned about from forehead to fontanel. His soft spot was also quite small and closed much earlier than my older child's. I also have an older DD who was CAT scanned for cranio (which she does not have, she has hydrocephaly), so I was familiar and also freaked out. We felt his ridge around 4ish months. My pedi was also felt it was atypical, as did his neurologist (who we were seeing for an issue with his pupils) so we went to see a neurosurgeon at Boston Childrens Hospital.

Turns out his metopic ridge DID fuse prematurely, but he did NOT need surgery. Now that he has more hair, you can't tell AT ALL. You can still feel it if you know what to look for, but it is not causing any problems, either neurological or cosmetic.

KRT · September 2011

wellfleet04:

My son has/had the exact same ridge you are concerned about from forehead to fontanel. His soft spot was also quite small and closed much earlier than my older child's. I also have an older DD who was CAT scanned for cranio (which she does not have, she has hydrocephaly), so I was familiar and also freaked out. We felt his ridge around 4ish months. My pedi was also felt it was atypical, as did his neurologist (who we were seeing for an issue with his pupils) so we went to see a neurosurgeon at Boston Childrens Hospital.

Turns out his metopic ridge DID fuse prematurely, but he did NOT need surgery. Now that he has more hair, you can't tell AT ALL. You can still feel it if you know what to look for, but it is not causing any problems, either neurological or cosmetic.

This is encouraging news. I am hoping that DS's turns out to be nothing and that he will just have to make sure he keeps his hair longer!

Did your DS have to have a CT Scan? What all did the neurosurgeon do as part of his exam?

Maywed05 · September 2011

My son's had a ridge but his head was not a normal shape. From what I have read sometimes a ridge is just the plates over lapping. I wouldn't worry too much if his fontanel is still open and his head is a normal shape. I would ask your pedi though what he or she thought. Maybe they will want to do a CT scan to make sure. I spent a lot of time on craniokids.org when my son was diagnosed. There is a lot of great info on their forums.

KRT · September 2011

Thanks everyone for the responses. I am keeping my fingers crossed that this is nothing...

Anyone's LO have craniostynosis?

Re: Anyone's LO have craniostynosis?

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