Discussions and questions about syndrome related craniosynostosis.
http://wcbstv.com/local/local_story_336121610.html
This is an article from the Tampa Tribune about a mother's fight to receive care for her son born with Pfeiffer Syndrome. ...
Hi everyone! Amanda will be undergoing her eye muscle surgery on Wednesday morning. Hoping for your support and prayers.
We just found out that my husband's cousin has a son who also had cranio. My question is-Are all genetic cases syndromes? I've read that all...
We just got the results of genetic testing today and Callum has Meunke syndrome. We left the appointment with stacks of info on Meunke syndrome....
The testing for SCS was negative, but Dr. Aughton was very clear in stating that it doesn't mean he doesn't have it. From the results letter: ...
Well I just got off the phone with our genetics counselor and I don't know if it is good news or bad. I guess it more good, but frustrating! It turns...
Hi, everyone, here's an overdue update on things. Two big doctors' appointments and a decision in the end. Enjoy the reading...:) The other week...
We picked up the check for Dillon's Saethre-Chotzen SYndrome testing the other day and had the blood drawn this morning (it was an absolute...
Has anyone heard of this? Vance had a genetics appointment yesterday. After he reviewed his records from Ohio he said that all of his chromosome work...
Hi, everyone, I finally heard back from the genetics clinic yesterday regarding my test results for Saethre-Chotzen syndrome. It’s really...
That the check for Dillon's SCS testing is on the way, the funding was approved :woohoo
Can anyone help me find more information on genetic conditions that would involve an elongated skull? We are adopting a baby who may have...
Hi, everyone, Well, my husband and I went to our first genetics counseling appointment Wednesday. It was an extremely interesting experience. ...
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