Craniosynostosis

small

My little girl potentially has Craniosynostosis - still to be 100% confirmed by the specialist unit. The only cure is surgery to split the fused bones in her skull.

Obviously the wife and I are a bit scared by it. I was wondering if anyone on here had gone through it before.

Many thanks in advance

SaraSeahorse

I am sure you habve had a hunt around web but if not I found this

http://answers.google.com/answers/threadview?id=56910

at bottom it lists UK support group and online group

B. Online Groups and Mailing Lists

Yahoo! Groups - Craniosynostosis and Parents Support (Associated with
CAPPS) (590 members)
http://groups.yahoo.com/group/cranioandparentssupport/

Yahoo! Groups - Children with Craniosynostosis (91 members)
http://groups.yahoo.com/group/childrenwithcraniosynostosis/

Craniosupport.com - Offers a members-only group. (88 members)
Yahoo! Groups – CranioSupport
http://groups.yahoo.com/group/CranioChat/

Glad

I'm sorry not to be able to give any specific help, but just wanted to send big *hugs* to all of you,
hopefully someone on here can offer more help but at least know there is always someone to chat with here,

alison6692

The Great ormond street website is excellent for information on paediatric illness and care within the uk.

It does have some info on craniosynostosis - but also loads of other info too e.g. what info to give your child before they go into hospital.etc.



p.s. I have pm'ed you.

macchicken

perhaps your local hospital or gp could put you in touch with a local support group, it will help speaking to others in your position.
hope all goes well!

Ticklemouse

Hi

Can't say anything specific other than I know 2 children who have had this (not related). The elder is now 16, the younger is coming up 3. Both are fine now and you wouldn't know the elder one had had anything wrong with him. The younger one still has a few marks left, but these are fading fast - he is a big, bright and active lad ;D

All the best to you and yours

TM

small

Many thanks to all for your messages.

We have our appointment for next week to see the Craniofacial Clinic in Oxford. We will know the outcome then.

small

My daughter had her first (of two) operations a couple of weeks ago. They reconstructed the back of her skull!!! WOW!!! She is OK - a bit out of her sleep pattern at the moment. She bounced back very quickly - we went home after only 4 days!!! It would be weeks if it was me.

rchddap1

Forunately kids tend to bounce back pretty quick. I'm glad that the operation went well and I'm sure your daughter will be causing no end of havoc before very long.

Glad

small wrote:

My daughter had her first (of two) operations a couple of weeks ago. They reconstructed the back of her skull!!! WOW!!! She is OK - a bit out of her sleep pattern at the moment. She bounced back very quickly - we went home after only 4 days!!! It would be weeks if it was me.

I'm so pleased she's ok
keep us up to date

Ted_Hutchinson

I am sure that Small would not want anyone else to go through this experience and so I'd like to point out
A mild but significant association was found between several specific malformations (oral cleft, gastroschisis and craniosynostosis) and maternal smoking. Though the odds ratios were very low for these associations, the change in absolute number, especially for facial clefts, is important due to high prevalence of smoking during pregnancy. These findings should be taken into account in preconceptional counselling.
The extra risk is only very low and I am sure that in small's case didn't apply at all however for those smokers considering pregnancy any reduction of avoidable risks is worth it.