Craniosynostosis & Plagiocephaly Support Group

Craniosynostosis is a medical condition in which some or all of the sutures in the skull of an infant close too early, causing problems with normal brain and skull growth. Plagiocephaly is a condition characterized by an asymmetrical distortion (flattening of one side) of the skull. It is a common finding at birth and may be the result of a restrictive intrauterine environment.

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  • Hi, I have 3 girls the youngest, who is almost nine was born with Left Coronal Craniosynostosis. She had surgery when she was 9 months and is now an intelligent and very beautiful if somewhat spoiled little girl. I just thought maybe I could give someone some support.
  • i just found out my 3 month old has metopic synostosis.We are in the process of the first step of ct scan on the 24th.then to see the pediatric plastic surgeon the 28th. i was hoping anyone out there with a child with metopic could shed some light on your experience so scared for him and the surgery and recovery,and advice or incite would be greatly appreciated.
  • Hi all. My 4 1/2 month son was just diagnosed with sagittal craniosynostosis. We saw the surgeon yesterday. I had a hard time absorbing all the info. because I was upset. Has anyone been through this? What surgical procedure do you recommend (open vs minimally invasive)? We live in Ohio and have a wonderful Nationwide Children's Hospital. Any info is much appreciated. Thank you
  • I was wondering if any one else out there is post-craniosynostosis. I had my surgery in 1975.
  • I'm 37 years old and am trying to find out information regarding treatment for a mild craniosynostosis. I have searched but find only resources for children. It's very lonely being an adult with craniosynostosis. I have multiple degrees and have been in the same job for the past decade, so I appear well adjusted, but I experience a great deal of prejudice and don't like to go to public places...
  • deleted_user

    concerned mum

    my daughter is 19 months old and she was born with the back of her head completly flat and her eyes look pushed into her head, i raised it with my health visitor and she sed it was normal but took my daughter to the docs and they referred her to the hospital and the pediatrtion sed she had neva seen a head that as stayed flat frm birth, my daughter got referred for a head xray which she had...
  • my son just turned 7 he is very impulsive we are wondering if it could be a result of the pressure on his frontal lobe. He had his surgey 5 years ago we just dont no. he doesnt seem to be able to determine right or wrong and is in trouble a school alot HELP HELP
  • I just found out that I an expecting my 5 child.. my other 3 who are 19,16,14 didnt have Cranio but my 18 mo did...he had Sagittal...I am afraid that he/she will have it..not sure if I can go through that again..I wonder what the percentage of having another Cranio baby is...I guess this time around..we can check to make sure the sutures are closed before birth..but my son after surgery just...
  • Hello, I am a very proud Grandma of a 3 year old and a 3 month old. I am concerned about the 3 month old grandson. When my daughter and family came over for Easter I noticed that my grandson had a mis shaped head. I ask my daughter if he was laying down to much and she said you have to be kidding Mom. His head has 2 large mumps on the right side. It looks like when you go to the fair and look...
  • deleted_user

    crainosynostosis surgery

    my 8 month old son is going in for surgery on the 17th of may, he was born with crainosynostosis. He is have surgery on his head, if anyone has any info or advice about it please message me or email me @ angelgurl0406@yahoo.comthanx and god bless...
  • deleted_user

    Anyone here?

    Just wondering if anyone actually visits this board. My son has positional plagiocephaly, and is currently being treated with a CranioCap. Given the higher incidence of positional plagiocephaly since the back to sleep campaign, I guess I expected this board to be a little more active!
  • deleted_user

    Neuropathy Group

    I think that this site will help you with resources and links, not only on pain management but how others have dealt with it. There are new topics everyday - a lot of research goes into the Neuropathyteam posts which provides many resources and links. Thought we could help.. Sincerely, NeuropathyTEAM
  • deleted_user

    positional plagiocephaly

    Would like to know parents\' experiences with helmets, bands, and repositioning.