Craniosynostosis??

[Marlana]

Hey everyone, It's been awhile since I've been on but I have a few questions for my Spina Bifida Family...

We just moved and were seen today in the neurosurgeon department for the first time with the new doctor and so far I hate it...

Without getting into all the details and I will try not to name drop (but if you ask, I will tell).. This doctor came to me with something new to add to my medical vocabulary.. well of course I googled the life out of it but I wanted to know if I just won the lotto twice now??

Craniosynostosis??? Apparently this doctor assumes my son has this and we are scheduling CT and Xrays and all the good stuff to confirm but I wanted to know if this was something else children with SB have or if I really have some luck here?? research says 1 out of 2,500 babies have it..

Please let me know everything you all know about this..
I have learned more from reading all of your threads about SB (from a parent/family member/ or person with spina bifidas' perspective)

I'm sorry if my thread makes no sense to you, I'm never good at writing, it may make sense in my head but it never comes out right.. lol

Thank you in advance!!!!!!

[excitedmom]

Craniosynostosis is defined by the premature closure of the sutures (the boundaries of the bone edges) of the skull. When this occurs, a bony ridge can sometimes be palpable or visible over this suture, but more apparent over time is the development of an abnormal head shape. On average, 1 in 2,000 children will be diagnosed with a craniosynostosis. It should be noted that this condition is primarily a problem of head shape and that the underyling brain structure and function are normal. In rare instances of multiple suture closure, the space within the skull becomes insufficient as the child grows and the intracranial pressure can increase. For either correction of head shape or relief of high pressure, surgery is corrective. I have never heard of this, but from what it sounds like, it isn't a major issue unless he has multiple suture closure. Hopefully someone else may chime in with experience. Good luck :)

[PhotogNica]

Just curious how old your son is? Mac had almost no remaining frontal fontanel at three months. The left side of his head DID close early, but it hasn't caused him any "problems" other than you can see a little bit of a "corner" right at the apex of the curve on his side (where it starts curving and being the top of his head vs. the side). Brain development etc. is normal.

[Marlana]

He is 15 months now, and I have seen a new neurosurgeon! She said it wasn't Craniosynostosis and that quite a few children with SB have a sort of "toaster" shape head as they develop and that it is normal.

[PhotogNica]

Oh good, I'm glad your NS reassured you! Yeah, at 15 months my other kids (non SB) had very small, negligible fontanels, and Mac only has a very small frontal fontanel at 5 mo. It's not even something they can use at all for ultrasounds of his ventricles (which they used to do quite often).