Craniosyntosis (Premature Skull Fusion)

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Craniosyntosis (Premature Skull Fusion)

Postby jansonirene » Sat Aug 14, 2010 2:34 am

My girl was diagnosed with craniosyntosis when she was 7 mths old. This is a condition whereby the sutures in the skull fused prematurely. Babies are supposed to have a soft spot on the head, and hers closed too early, thus restricting the growth of brain.

She went through an op at one year old and another recently at 6 years old, to break up the skull to create more room to accomodate the brain growth.

Any parents with children of such condition?

jansonirene
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Re: Craniosyntosis (Premature Skull Fusion)

Postby Inagaki » Tue Aug 17, 2010 10:07 pm

jansonirene wrote:My girl was diagnosed with craniosyntosis when she was 7 mths old. This is a condition whereby the sutures in the skull fused prematurely. Babies are supposed to have a soft spot on the head, and hers closed too early, thus restricting the growth of brain.

She went through an op at one year old and another recently at 6 years old, to break up the skull to create more room to accomodate the brain growth.

Any parents with children of such condition?


Hi, it's good to here from another parent with a cranio kid. Yes, my boy was born with this condition too. It was detected a week after birth and he had his surgery at 3 months. Were you getting treatment at KK? He was under Dr Vincent Yeow.

He is 5 years old now. It didn't affect him very much. All's normal except for the zig zag scar on his head.

How old is you girl now?

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Re: Craniosyntosis (Premature Skull Fusion)

Postby jansonirene » Wed Aug 18, 2010 11:22 pm

Inagaki wrote:
jansonirene wrote:My girl was diagnosed with craniosyntosis when she was 7 mths old. This is a condition whereby the sutures in the skull fused prematurely. Babies are supposed to have a soft spot on the head, and hers closed too early, thus restricting the growth of brain.

She went through an op at one year old and another recently at 6 years old, to break up the skull to create more room to accomodate the brain growth.

Any parents with children of such condition?


Hi, it's good to here from another parent with a cranio kid. Yes, my boy was born with this condition too. It was detected a week after birth and he had his surgery at 3 months. Were you getting treatment at KK? He was under Dr Vincent Yeow.

He is 5 years old now. It didn't affect him very much. All's normal except for the zig zag scar on his head.

How old is you girl now?


Did your boy have the multi-sutural craniosyntosis?

Yes, my girl was operated by Dr Vincent Yeow too twice, once at 1 year old and the 2nd time at 6 years old, which was a month ago. I was told that the cranial pressure has built up again after a CT-scan and that's why she has to go under the knife again.

Did Dr Yeow advise you to do further surgery on the face? The condition has caused my girl's mid-face to be more sunken, and the eyes look protruding.

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Postby Inagaki » Fri Aug 20, 2010 12:35 am

Oh? I'm really surprise to hear it will build up again. Somewhere about 2 years back, they stopped calling us back for review. And seeing that my son seems absolutely ok, we have never reminded them. Now that I hear from you, I think we have better get a review again.

I'm thankful I talk to you again.

Each time we went, it was like a chit-chat session, how did Dr Yeow get your girl to go for CT again. Was it obvious that her features, as you mentioned was showing more pronounce?

For my boy, I think his may have been a mild case. Because his looks is totally not affected. Hmm, from what I know, his is only one side, not multi. his forehead still abit kok kok, but other than that, all other features are not affected.

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Postby jansonirene » Fri Aug 20, 2010 2:09 pm

My girl was never discharged since day 1, and her follow up visit to Dr Yeow used to be half-yearly, before moving on to yearly. Like what you say, it is usually a chit-chat session. You mean your boy was discharged, or you decided to discontinue?

But, during her last visit, Dr Yeow found her forehead to be more protruding and arranged for a CT scan. That's where Dr Seow WT (the neurosurgeon) assessed that her cranial pressure was building up. So this time round, they broke the top part of the skull; previously they broke and remolded her forehead. I did ask what are the chances of having to go for another op a few years down the road, but the assessment was that the size of her brain is now 80% of that of an adult. So hopefully, less chance to go under the knife again.

My girl will be seeing Dr Yeow again next Tuesday.
Shall we keep in touch on our children's progress?

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