My son has craniosynostosis...

Tammie - posted on 01/27/2013

Yes, my daughter was 2 months old when we found out she had surgery 2weeks later. She is now 25 years old, I had never heard of craniosynostosis, they cut her head from one ear to the other, she was in hospital 4 day's. She did great. I wish I had known someone to talk to about this. Iwas so afraid. You would never know anything was wrong with her she is beautiful, and very smart. I think God we have Doctors who know about this.I am thankful we had it done and my daughter is to. She has a little boy 3 years and he is fine. I pray everything goes good for Blake, i'm sure he will do great.

Nicole - posted on 06/16/2012

my son who is 5 years old,the doctor had said today that he might have Craniosynostosis hes also going to have a mri scan in 2 weeks because he has headaches all the time,just want to know why they havent picked up on this b4,asked me weather i thought about his head shape b4 and i said well no i just thought everyone head shape is diff but when he pointed it out i was gobsmacked,hes reached all his milstones and is very clever at school so i really dont know what to expect as ive only read to have surgry done if infants ?

Heidi - posted on 02/20/2012

hi my name is heidi and iam so glad i find some1 with a child with craniosynostosis iv have 2 kids with craniosynostosis my first boy is 9 had sugery when he was 18 months old was told he was i in a million that its not gernitic so i went a head with another birth and my 4 year old just went thought sugery last april had rods in his skull for 5 months and then had them removed his hole skull was closed they where hoping it worked but we dont think it has as we are going back to westmead this friday for more scans it a on going thing never has stop with my kids they both have learning and behavour problem and schools and preschool have alot of problems with then hoping to talk to some1 that goes though the some thing and support though the hard and good times .my 2nd boy was the hardest as they had to keep him awake the hole time it was very hard as iv got no family to help or support me and the kids it was very hard and still is its an ongoing progress but we get though it hoping to talk more with u

Dana - posted on 03/05/2009

Hi I know what you are going through.  My sone, now 3 was diagnosed with craniosynostosis at 3 months old.  He had his first surgery at 6 months and his second at 2 years 4 months.  He is doing amazing and you would never know looking at him that he went through such an ordeal.  I would love to talk to you more about the process, I do have photos if htat would help.  I didn't have anyone to talk to at this scary time so if there is anything that I can do I would be so happy to. 

Amee - posted on 01/13/2009

my son had sagittal synostosis and had surgery when he was 9 months. he had a sagittal craniectomy with a barrel stave procedure and then wore a helmet for quite a while afterwards. if you have any questions about this procedure or would like to see any pics to kind of know what to expect, let me know!

Danielle - posted on 01/13/2009

My daughter had surgery for Metopic Synostosis or trigonocephaly.  A low percentage of kids have that type of craniosynostosis.  We noticed it right at birth because of her triangular shaped forehead.  Surgery was done at 9 months.  She is now 7 and although they said she may need further surgery she has not.

Danielle - posted on 01/13/2009

My daughter had surgery for Metopic Synostosis or trigonocephaly.  A low percentage of kids have that type of craniosynostosis.  We noticed it right at birth because of her triangular shaped forehead.  Surgery was done at 9 months.  She is now 7 and although they said she may need further surgery she has not.

Amy - posted on 01/12/2009

I would recommend getting a 2nd opinion and consulting a neurologist before jumping into a surgery..and here's why:

My son was diagnosised as having craniosynostosis by our pediatrician and scheduled to meet a surgeon before we really knew what was happening! My husband and I were very reluctant to have a surgery done and so we got a 2nd opinion from another pediatrician who then referred us to a neurologist. We had xrays and ct scans done and come to find out the first doctor had mis-diagnosed it and our son actually had positional plagiocephaly which is the flattening of the head which creates a "ridge" as well because the plates are misaligned. All he had to do was wear a craniofacial helmet for about 3 months straight and it solved the problem. The neurologist we saw told us that it's can be very tricky to tell the difference between the two because the both present the same signs.

So definitely, I recommend getting some ct scans and xrays done and meeting with a neurologist because with the xrays they can see whether or not the sutures have closed prematurely or not . If it is craniosynostosis though, it does require surgery, but from what I researched, it's an easy surgery and very fixable, but we just personally didn't want to jump straight to surgery.

Judy - posted on 01/12/2009

I am a mother of not only one, but two craniosynostosis boys. Both of my boys had surgery at 2 1/2 to 3 months old and I'm soooooooooo glad that we did it. What type of craniosynostosis has he been diagnosed with? Ours were both Sagittal. If it is this same type I should be able to help you a lot. My boys are now 6 and 3 and you can't tell they every had surgery. Keep in mind that you really are lucky that it's a 'fixable' thing...kids with cancer aren't so lucky...!