Wednesday, December 12, 2007

Cranio-what?!

So, I have been putting off this post, but I guess that I should write about it. A little over two months ago when we went to Nathan's first appointment our doctor said that his head was a little funny shaped, and that the bones in his head looked like they were fusing prematurely. He also told us that they were going to monitor it until his 2 month appointment. Well, last week when he went to his appointment the doctor referred us to a neurosurgeon! Yikes!

So, today we went to the neurosurgeon and he took his hands and felt his head and said that the plates aren't all the way fused together (a positive thing) but that it is some type of craniosynosis (the premature fusion of plates in his head). He has now referred us to a plastic surgeon/craniosynosis specialist in West LA. We don't have an appointment yet (hopefully tomorrow we'll be able to call and get one) but we'll keep you posted.

It's not certain that he'll have to have an operation to fix it, but if they do they'll cut his skull open and make it so that his head can expand and he won't have brain/eye problems! The positive side of all of this is that they have found it early, and the websites say that it's best if it's found and operated on before 3 months of age when their heads can make bone and repair themselves!! After the operation he'd probably have some kind of protective helmet to keep his head forming correctly...

:{ It sounds too scary and crazy for my sweet little Nathan who doesn't look like he needs a neurosurgeon!!!! At least he's happy and healthy (well, besides the head thing) and eating--he looks like a normal baby I think!!

I'll keep you posted...until then, keep us (especially him) in your prayers. We need all the help we can get!

Here's a little video of him...he loves to coo and gurgle and talk to you. It's quite fun! :)
video

3 comments:

Jen Kesler said...

Huge bummer that the little guy might have to go through surgery, but like you said, it's better that they found it now and not later!

You guys will definitely be in our prayers!

Glo said...

Hi!
I stumbled across your family's blog while searching on the internet for craniosyntosis. We are in L.A., too.
You have a very beautiful family, and I'm so glad to hear that your son's surgery went well.
I am going through a similar situation. My son is 11 months now, and a ridge on the top of his head manifested itself when he was around 6 months old. At his 9 month check up with the pediatrician, she referred us to the neurologist and CT scans were done. Aiden's case is not so straightfoward. They tell me that his sutures are partially closed. So, we went to the plastic surgeon and he says that his sutures are completely open and that his head shape looks fine. I'm so confused now, so I'm going another set of opinions at UCLA (hopefully next week). Have you read anything in your research about partially closed sutures?

Allison said...

@Glo...I don't have a way to contact you so hopefully you see this. I am sure that I would go and get a second or a third opinion because you DON'T want to find out when he's 18 or 24 months that he should have had the surgery because then it will be much harder on him. I've not read too much about partial closures but I know that we knew that it was time to do the surgery when he started having "thumbprints" on his brain from the pressure caused by the fusion and a growing brain! Please feel free to contact me at marcroftfam (at) verizon (dot) net if I can be of any more help!

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