Guest guest Posted December 9, 2009 Report Share Posted December 9, 2009 I got the news the other day I was dreading. My 2 1/2 month old daughter Gwen has craniosynostosis. I know this group is for positional plagio, but does anyone here have expreience with Cranio? My daughter will be seen at Childrens Hospital in Philly in 2 weeks and will probably be having surgery and I imagine a helmet afterwards. She has one suture closed and I am hoping it's not too complex a surgery.. My son had misshaping and had a helmet from tort so I was hoping her flatness was caused by womb positioning...but here we are. I'm overwhelmed to say the least, but I'm glad I had a lot of knowledge about plagio that I pointed this out to her doctor asap and got the needed tests. Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2009 Report Share Posted December 9, 2009 Hello and sorry to hear about your little one. There is a group specifically for cranio support - it is cappskids here is a link: http://www.cappskids.org/board/ I have seen posting from cranio moms here, but not recently (I've been in this group 3 yrs). Babies usually do great wit the surgery and heal very quickly. I'm glad you found the problem so early and hope that soon it will all be behind you. -christine sydney, 3.5 yrs, starband grad > > I got the news the other day I was dreading. My 2 1/2 month old daughter Gwen has craniosynostosis. I know this group is for positional plagio, but does anyone here have expreience with Cranio? My daughter will be seen at Childrens Hospital in Philly in 2 weeks and will probably be having surgery and I imagine a helmet afterwards. She has one suture closed and I am hoping it's not too complex a surgery.. > My son had misshaping and had a helmet from tort so I was hoping her flatness was caused by womb positioning...but here we are. I'm overwhelmed to say the least, but I'm glad I had a lot of knowledge about plagio that I pointed this out to her doctor asap and got the needed tests. > > Kate > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2009 Report Share Posted December 9, 2009 Hi Kate - My nephew had craniosynostosis as well - mainly of only the frontal suture and he underwent surgery when he was 9 months old in Richmond, Va. He did very very well through his surgery - he spent a couple nights in the ICU and then went to the regular floor for a night and went home in 3 days - and my sister had a hard time keeping him from going 100% afterwards. He has not had any problems since and is a thriving 4 year old today. Craniosynostosis can vary in its severity depending on how many sutures have fused - but from what you describe it sounds like your daughter's case is on the the more mild side - but the surgeon can tell you more. I agree with going to the cranio group as they will have much more information to share with you - but I wish you and your daughter the best of luck and I am glad you caught it early. - Meg mom to Lucy 18m, STARband grad 1/09 Milwaukee, WI > > I got the news the other day I was dreading. My 2 1/2 month old daughter Gwen has craniosynostosis. I know this group is for positional plagio, but does anyone here have expreience with Cranio? My daughter will be seen at Childrens Hospital in Philly in 2 weeks and will probably be having surgery and I imagine a helmet afterwards. She has one suture closed and I am hoping it's not too complex a surgery.. > My son had misshaping and had a helmet from tort so I was hoping her flatness was caused by womb positioning...but here we are. I'm overwhelmed to say the least, but I'm glad I had a lot of knowledge about plagio that I pointed this out to her doctor asap and got the needed tests. > > Kate > Quote Link to comment Share on other sites More sharing options...
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