Re: Surgery for Metopic Synostosis

[Guest guest]

I'm so very sorry to hear that your baby has to have surgery. I don't

have experience with it but wanted to direct you to www.cappskids.com

for support and info.

Good luck and I wish the best to you and your family.

Jen

(17 mo), tort resolved, Hanger Band Grad

(almost 4yrs)

--- In Plagiocephaly , " jenbarrier " <jenbarrier@y...>

wrote:

>

> Does anyone have any experience with this surgery? We just found out

> that one of our twins has to have surgery for this condition. We were

> really shocked to find out it was this serious. I am looking for any

> support groups that deal with Craniosynostosis. Just a very concerned

> mother......

>

[Guest guest]

I'm so very sorry to hear that your baby has to have surgery. I don't

have experience with it but wanted to direct you to www.cappskids.com

for support and info.

Good luck and I wish the best to you and your family.

Jen

(17 mo), tort resolved, Hanger Band Grad

(almost 4yrs)

--- In Plagiocephaly , " jenbarrier " <jenbarrier@y...>

wrote:

>

> Does anyone have any experience with this surgery? We just found out

> that one of our twins has to have surgery for this condition. We were

> really shocked to find out it was this serious. I am looking for any

> support groups that deal with Craniosynostosis. Just a very concerned

> mother......

>

[Guest guest]

There is a Cranio and Parents support group through , very

similar to this one. Not sure if this link will work, but here it is.

CranioandParentsSupport/

Amy

--- In Plagiocephaly , " jenbarrier " <jenbarrier@y...>

wrote:

>

> Does anyone have any experience with this surgery? We just found out

> that one of our twins has to have surgery for this condition. We

were

> really shocked to find out it was this serious. I am looking for any

> support groups that deal with Craniosynostosis. Just a very

concerned

> mother......

>

[Guest guest]

There is a Cranio and Parents support group through , very

similar to this one. Not sure if this link will work, but here it is.

CranioandParentsSupport/

Amy

--- In Plagiocephaly , " jenbarrier " <jenbarrier@y...>

wrote:

>

> Does anyone have any experience with this surgery? We just found out

> that one of our twins has to have surgery for this condition. We

were

> really shocked to find out it was this serious. I am looking for any

> support groups that deal with Craniosynostosis. Just a very

concerned

> mother......

>

[Guest guest]

Jen,

CAPPSKIDS.ORG is a great website. Craniosynostosis and positional

plagiocephaly kids support group. They have a wealth of info and a

section just for cranio parents. I am so sorry to hear about the

surgery. Please let us know how things go. Get your second opinions and

look into post operative banding so that the surgeon can work with a

band provider. My prayers are with you.

CAROLG

--- In Plagiocephaly , " jenbarrier " <jenbarrier@y...>

wrote:

>

> Does anyone have any experience with this surgery? We just found out

> that one of our twins has to have surgery for this condition. We were

> really shocked to find out it was this serious. I am looking for any

> support groups that deal with Craniosynostosis. Just a very concerned

> mother......

>

[Guest guest]

Jen,

CAPPSKIDS.ORG is a great website. Craniosynostosis and positional

plagiocephaly kids support group. They have a wealth of info and a

section just for cranio parents. I am so sorry to hear about the

surgery. Please let us know how things go. Get your second opinions and

look into post operative banding so that the surgeon can work with a

band provider. My prayers are with you.

CAROLG

--- In Plagiocephaly , " jenbarrier " <jenbarrier@y...>

wrote:

>

> Does anyone have any experience with this surgery? We just found out

> that one of our twins has to have surgery for this condition. We were

> really shocked to find out it was this serious. I am looking for any

> support groups that deal with Craniosynostosis. Just a very concerned

> mother......

>