Well today my 7 year old son with Sticklers had reconstructive ear surgery at St. Louis Childrens Hospital. I was wondering if any of you have had any problems...
Hi Val - hope that all has gone well with the surgery. What type of surgery was it? My son has severe hearing loss and there is a problem I guess with the...
My son had Otoplasy done because his ears had no cartilage in them and they were growing down and out and it would eventually cause him deafness but he has...
Hi there, I have been a member of this group for a while now but haven't actually posted a message. Both myself and my son were born with Pierre Robin...
Hello I was told by a doctor in St. Louis at Childrens that it is common because my son experiences it. He is on a antidepressent now and it is of course...
Hi Fay, re the testing - it is very important to note that there is no test for Stickler syndrome. They can test to see if a couple of the known mutations...
Hi Val, as I just put in my post to Fay, Ty is going through this now too. We are going to homeschool him for awhile, he has just been through too much...
Hi I am Kay. I have been married to Stephen for almost 10 years. He was born with Marshall Syndrome which is very close to Sticklers. We have 3 beautiful...
Hello!! I am new to the board. I was diagnosed with Stickler-Marshall Syndrome a few years ago. A little about myself...I am 23 and from Minnesota. Look...
Welcome! My husband is Stephen who has Marshall Syndrome. In turn 2 of my children do too. Ashlyn is 5 and Aaron 8 months. Kay aka mom2three Wife to Stephen...
Hi, a big welcome to the new members, it is interesting to hear your stories. I know that depression isn't a symptom of sticklers, however as has been...
Hi Kay- Can you tell me more about how your family is affected by marshall syndrome? Are all the symptoms like stickler syndrome? Did you get tested for...
There is no real "test" for Marshall. We saw Dr. Day ,genetics, who now works with Dr. Salyer here in Dallas. Dr. Salyer was my husbands surgeon but never...
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...
