Discussions and questions about syndrome related craniosynostosis.
We have a sticky with a bunch of links and such, but I thought that I would make a short list here for reference. If you have any syndromes to add...
We can use this thread to share links with helpful syndrome information! If you have a link to share, please reply with it! Here is a chart...
Our daughter now has confirmed bicoronal, we are going up to Oxford for our fist consultation next Tuesday, don't know whether I'm dreading it, or...
We have decided to have our son Joey evaluated by EI. He is 16 months old (corrected age 15 mo.) and he doesn't babble, doesn't say mama or dada w/o...
Good news: Daughter is out of her helmet. Bad news: She is going in to a spica cast on Monday, we just found out today, for her hip dysplasia -...
Is what the Dr's currently think my son has. We're going to see the Geneticist in Dec and will hopefully be able to get a confirmed diagnosis (if...
This article talks about the discovery at Oxford University of two more genes associated with cranio. In the ERF gene mutation, complications...
Just wondering for those childeren with Muenke which required more surgeries how did you know, Georgias nose and mouth are starting to grow to one...
Hello, My little boy (11 weeks) has metopic cranio and will have surgery on his skull between 12-18 months because that's when they perform the...
Earlier this year my 5 year old daughter who has been diagnosed with Muenke had what we thought was a absent seizure, since then she has had 3 more...
http://www.eurekalert.org/pub_releases/2012-11/uoc--itd111512.php
Often we hear as parents that multiple sutures means syndrome. Mark had multiple closed suture - coronal and sagittal. He is not syndromic, has...
Is it common for metopic kids to have syndromes and/ or genetic issues? Our CFS says he thinks something is going on with Hunter and wants us to see...
My son was just diagnosed with this. Anyone else's little one get diagnosed with this that's willing to share their story with me? I am trying to...
Hi all, Just noticed that my post for Reece's Rainbow kids with Apert's syndrome (http://reecesrainbow.org/?s=apert ) and Saethre-Chotzen Syndrome...
Hi. My daughter Jamie was diagnosed at birth (a week and a half ago) with bilateral coronal craniosyntosis. they think it's likely that it is a...
My daughter, Rylee, is 6 months old and we have been on a roller coaster ride since she was born. One month they're doing CT scans, measurements, and...
Hi! My name is Tracey. I am brand new to Craniokids but am so happy to have found it! You all seem so incredibly supportive of each other and it...
hi mamas i'm new here i think my daughter has cranio no diagnosis yet but her soft spot is close she is 5 months old she will turn 6 months at the...
I posted this on the FB page, How many of you did genetic testing? We went for the appt in March, we did the bloodwork in September when she had her...
So we got the results last week and this is what they say: The SNP microarray is the test used to detect very small differences in genetic...
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