update on 14-week old with craniosynostosis

[Guest guest]

Well, he's now a 15-week old. We met with the plastic surgeon

yesterday and, unfortunately, he thinks Jack has coronal

synostosis. We have a 3D CAT scan scheduled for next week to

verify. I am still in shock, really. But I'm also thinking ahead

and am concerned b/c this plastic surgeon wants to wait until Jack

is 1 year old to do the surgery in order to allow the bones to

calcify more. He thinks this prevents having to have a second

surgery as sometimes happens. I'm not sure how I feel about that.

Anyway, I'll report back after the CAT scan next week.

[Guest guest]

Please keep us posted. I am saying my prayers and a pray that the

scan comes back good. Let us know how next week goes.

Angie and Jenna(STAR grad)

> Well, he's now a 15-week old. We met with the plastic surgeon

> yesterday and, unfortunately, he thinks Jack has coronal

> synostosis. We have a 3D CAT scan scheduled for next week to

> verify. I am still in shock, really. But I'm also thinking ahead

> and am concerned b/c this plastic surgeon wants to wait until Jack

> is 1 year old to do the surgery in order to allow the bones to

> calcify more. He thinks this prevents having to have a second

> surgery as sometimes happens. I'm not sure how I feel about that.

>

> Anyway, I'll report back after the CAT scan next week.

[Guest guest]

umm all the research i have done does not suggest that is the normal coarse of treatment there is a cranio board on CranioandParentsSupport/ i would really recommend talking to some of them before doing that and get a second opinion most i know have surgery around 3 to 4 mos ideally they evauled my son for cranio at one time saying that if he did have it not to worry he was 8 wks and they dont do surgery until around 3 -4mos soo i would really not wait a year get a second or third opinoin and be sure.

good luck

[Guest guest]

Hi,

I'm so sorry to hear they think it's cranio. Please, do get a second

opinion! Good luck at the CT scan appt. Please let us know how you

make out.

There is an excellent Cranio group you could look into, maybe

someone over there will be in your area. If your interested the URL

is:

http://www.cappskids.org/board/

Just click on register.

> Well, he's now a 15-week old. We met with the plastic surgeon

> yesterday and, unfortunately, he thinks Jack has coronal

> synostosis. We have a 3D CAT scan scheduled for next week to

> verify. I am still in shock, really. But I'm also thinking ahead

> and am concerned b/c this plastic surgeon wants to wait until Jack

> is 1 year old to do the surgery in order to allow the bones to

> calcify more. He thinks this prevents having to have a second

> surgery as sometimes happens. I'm not sure how I feel about that.

>

> Anyway, I'll report back after the CAT scan next week.

[Guest guest]

I'm sorry you didn't get such good news . I would definitely get

a second opinion though and join some of the cranio boards to talk

to other moms who have been in your situation. Good luck with

everything. Keep us updated on Jack.

, mom to Hannah, DOCgrad

Cape Cod, Ma

> Well, he's now a 15-week old. We met with the plastic surgeon

> yesterday and, unfortunately, he thinks Jack has coronal

> synostosis. We have a 3D CAT scan scheduled for next week to

> verify. I am still in shock, really. But I'm also thinking ahead

> and am concerned b/c this plastic surgeon wants to wait until Jack

> is 1 year old to do the surgery in order to allow the bones to

> calcify more. He thinks this prevents having to have a second

> surgery as sometimes happens. I'm not sure how I feel about that.

>

> Anyway, I'll report back after the CAT scan next week.