Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 hi my name is larae and my son who is 9 months old now has plagiocephaly. he however could not get the band. he had to have surgery when he was 6 months old. it was horrible. his fontenals had even formed together prematurely. i still feel bad about this whole thing. i was going to start a group about plagiocepholy thinking their wasn't any but there was. i am glad that their is support out there. well anyways. i have pictures and all to share. i would love to hear from you if your sons or daughters have had the same surgery for plagiocephaly. its called craniofacial reconstruction surgery. thank you in advanced. larae Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 WELCOME LARAE GLAD THAT YOU HAVE JOINED US. RANAE SPENCER'S MOM! :-} Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 Hi your child had craniosynostosis and it is a form called Plagiocephaly but not Positional Plagiocephaly which is what this group is about. Your child had Coronal Craniosynostosis. But we have a support group for that. You can go to www.caps2000.org and join under Craniosynostosis or email me at CAPSORG@... if I can help with anything. My son had surgery and he is doing great! Look forward to talking with you. Pitchke Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2001 Report Share Posted March 15, 2001 Larae, Welcome to the group and thank you for sharing your story with us. There are some members here whose babies have craniosynostosis and are facing surgery to correct it. Some of those babies will then wear helmets during the recovery period so they have that in common with us moms whose children have plagio and only require the helmet/band and not surgery. I'm glad you joined us and I look forward to seeing your pictures. This is an AWESOME group - I could never have gotten through this experience without them. Has your son fully recovered from the surgery now? Welcome! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2001 Report Share Posted March 16, 2001 Hi Larae! My name is Kim and my son might be facing possible surgery in the near future. Is your son wearing a band now after the surgery? This is a great group and we are so glad you are here! We share the good and the bad times together. Please let us know how your son is doing! Kim, Raleigh, NC -----Original Message----- From: LaRae [mailto:bittersweet43244@...] Sent: Thursday, March 15, 2001 12:29 AM Plagiocephaly Subject: hello new plagio member hi my name is larae and my son who is 9 months old now has plagiocephaly. he however could not get the band. he had to have surgery when he was 6 months old. it was horrible. his fontenals had even formed together prematurely. i still feel bad about this whole thing. i was going to start a group about plagiocepholy thinking their wasn't any but there was. i am glad that their is support out there. well anyways. i have pictures and all to share. i would love to hear from you if your sons or daughters have had the same surgery for plagiocephaly. its called craniofacial reconstruction surgery. thank you in advanced. larae Quote Link to comment Share on other sites More sharing options...
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