There is another group that has started. It is called SticklerSyndromeSupport. The link is http://groups.yahoo.com/group/SticklerSyndromeSupport/ We plan to...
I have been having problems with my left eye off and on for quite some time. A few months ago I noticed a feeling of something in my eye, and when I looked at...
I have a son w/cleft lip & palate & am trying to find a live chat room to chat w/other parents. Can you do that on here? Every time I go into chat, no one...
Hiya I don't find that there is many messages on this group. Try this link http://groups.msn.com/CLAPParents where you will find a group for parents
of kids...
Hi, I have a son who was born on oct. 8th and has what they call a pierre robin syndrome. I was wondering if anyone can share any experiences/wisdom on whats...
Hi Kristin i was born with prs and cleft palate in the 60's, my cleft was fixed when i was less than a year old. I was never given a trach either but was...
hi, Thanks for the information right now things are a little hetic with Andy b/c he suddenly they think developed an infection but all the tests came back neg....
I thought this may be a good and safe place to vent. I'm 23 I was born with a cleft I had the surgery at age 3, my speech I'll be blunt less then par till...
hi, I have the same problem. I am 21yrs old and a stay at home mom of two. Well I was born with a cleft palate and I had surgery at the age of 1. And also my...
Kristin, Thank you for your emai, I have a question for you I was recently advised agaisnt having kids because my current doctor feels that the cleft is 100%...
Elana, Hi, all the genetic counselors i have been seen and talked to about the cleft's say that it is not 100% genetic. But even though genetics play a part in...
my daughter sarah is 13 months old. she recently had her palet repaired, she had a cleft of the hard and soft palet. when her dr. did the surgery he just...
Hello, my name is Casie, some of you may know me and my family from PRN I just found this group and hope to learn a little more about sticklers to help my...
hi, Being a person who was born with a cleft palate of the hard and soft. I can tell that the hole that is still in your daughters mouth after the repair does...
hi, When I had my daughter I seen a genetic counselor and she told me that cleft palate isn't really all the genetic. That yes genetic does play a part but a...
Hello, My name is Macy Dinger. I am 19 and because of special circumstances i am just starting surgeries. When i was young they repaired the lip but that is...
Hello everyone! My name is Andy , I am a 32 year old Microbiologist from Glasgow, here in Scotland. I was surfing and found this page.I was interested to read...
Hello, I just read the post and wanted to say it was nice and I thought that how u motivated yourself was interesting...LOL...Take Care and hope everyone...
Here are some recent pics of our skyguy...thanks for letting us share with you. ~Casie and Mike Casie Caughlin has invited you to see photos at the Walmart.com...
http://www.thesandiegochannel.com/news/2878850/detail.html Troubleshooter Changes Toddler's Perspective Of Life LensCrafters Donates Glasses To Allrunner ...
Another good link to check out is: http://www.secretservice.gov/alert419.shtml Shelly Moore President - Oregon Chapter National Marfan Foundation (Self & all 3...
Sorry for the mis-post - Wrong Stickler's list - opps :-0 Shelly Moore President - Oregon Chapter National Marfan Foundation (Self & all 3 kids Stickler's...
I know most of the group members here are mothers of sticklers children. But Iam a sticklers child. Im 14 and live in colorado I found out I had the syndrom in...
Welcome Amber, My name is Casie I have an almost 20 month old little boy named skyler. He too has Sticklers along with another condition called Pierre Robin...
Hi, I'm the mom of a 7 year old recently diagnosed with Stickler Syndrome. She was diagnosed at birth with Pierre Robin Sequence and has had a couple of cleft...
I e-mailed you & I added my family's pic to the photo section.~Amber ... little boy named skyler. He too has Sticklers along with another condition called...
Hello there, My name is Casie, I have an 20 month old son who also has prs and ss. At his birth we expected a cleft palate due to my family history. But that...
Where about are you from? One place that i would recommend is Shriners Hospitals and Clinics if you are having any problems with insurance.. They specialize...
Thanks Melanie. We live in K.C. and all her care so far has been at Children's Mercy Hospital. They're a great place to go, but there are so many specialties...
