My son was diagnosed yesterday with cranial saggital synostosis at gosh in London. We bumped Into a lovely couple who told us about this website and gave us some advice and reassurance.
My son was diagnosed yesterday with cranial saggital synostosis at gosh in London. We bumped Into a lovely couple who told us about this website and gave us some advice and reassurance.
I was scared and confused and just looked at so many websites and this one popped up and I click on it right away.
There is hope and comfort in each and every story. I am the grandmother to a beautiful 8 month baby boy named Landon.
He has Metophic Cranio and was scheduled for surgery today. The plastic surgeon cancelled and we are just devistated. No new surgery date yet. I just know that everyone that has responded to my cry has helped me so much. What a wonderful safe place for anyone facing this surgery. I will be so glad to say "We are on the other side"
We found the site from a google search the day we heard our son might have cranio.
Hello, I am new here, found this site while trying to find out just what it was that Bub had. Glad I found it. Bub was born with a cone on the back of his head. Everyone was saying it was from the birth and that it will fix its self. After two weeks and seeing that bub's head was getting pointer I started to nag people to get some opinions. Finally I was advised Bub had saggital craniosynostosis. We have had our first consultation and spring crainoplasty was advised as the best option for Bub. Given that it has been out there for a few years now, does anyone have information they can share with me regarding their experiences on this procedure.
Jacbetty mum of PJ 12/05/12 - diagnosed 19/08/12. Saggital cranio Op - tba
Hi everyone. I am new here. This site was recommended to be by another Australian cranio Mum. We are two weeks post op and super glad to be on the other side!
Mum to Sammy - Lambdoid Craniosynostosis and Positional Plagiocephaly
Helmet from 5 months to 14 months ~ CVR 08/09/12 - we are on the other side!!
After my baby was diagnosed with sagittal craniosynostosis (completely unexpected at his two month checkup)... I (like all everyone else it appears) immediately spent hours researching it panic stricken. This site popped up and I didn't register right away because I didn't think I needed outside support. My mom found the site also while googling the condition and suggested -in a subtle way- that I spend some time on it. Now that we are a week away from the endoscopic procedure for my 14 week old, I suddenly feel panicked and a strong need to connect with others who have been where I am at now. Holy smokes.. this is scary.
-Erin
When I noticed a ridge on my son's head I started to google some pictures and they leading here. :) I was already a member of a UK group called Headlines and they recommended this site as well.
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