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Hi..I have a 5 month old with SS. He has the joint popping problem as an infant. Has anyone ever heard of or know another baby that has joint problems? I cant...
Hello Carole, I live in London , my daughter is now three and she has glasses since she was 10 months. In the UK there is a support group for SS. I will give...
Dear Carole, I just read Amy told you about the support group and the book The Elusive Syndrome ,I read it and I really reccomend it. My daughter is going to...
Hello. I have had the cryotherapy in Cambridge on both eyes. It worked successfully on my left eye but my right eye has since detached twice and now I have...
Hi Carole, I wore glasses when I was 6 months old. If you can get your son glasses it will be to his benefit. If the Dr says no I would check with a diff dr....
Hi everyone... I have been searching for answers for the last 2 yers with my almosst 4 year old boy.. About 6 months ago a doc diagnosed my son with SS.. he...
My daughter has SS and noone in the family has SS. MYself and my husband had the test done , They say she is the first in the family. The only thingh I can say...
Thanks.... Its nice to know I am not the only one.. On top of SS is is believed that my son has SID as well... sensory intergrative dysfunction... When was...
Me and My sister both have sticklers. My sister is trying for a baby, she was wondering if anyone knowingly had sticklers and has had a baby. Her main worry...
My name is Valerie and i have sticklers but didnt know it until my daughter was diagnosed. I had an epidural with her and everything was fine, me and my family...
Hello Lisa, my daughter was born with Pierre Robin sequence (cleft palate, small chin breathing and feeding problem................................all gone now...
my name is Faith and I m a mom to Jessica 11 yrs old : Migraines and is on Topamax 25mg daily & Antonio 7 : Pierre Robin Syndrome, Gerd, Pulmonary stenosis,...
Hello Does anyone have or know any babies under 1 year old with joint problems? I heard with SS that the joints come later in life. My name is Jacqui and my...
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Hello to all My name is Cathy I am 33 years old. I am married with no children. I do have 6 cats. I was adopted by a very nice family. My family couldn't take...
Hi I am interested in hearing people's experiences re child birth. I am considering having children but have drawn the following conclusions: there is a 50:50...
Hello Bev. My name is Cathy. I am 33 with no children. I was born with a cleft palate and had ear tubes and a detached retna at age 11 in my left eye. So far...
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I have my own personal story. I do not have Sticklers but my husband does. When I was pregnant, I didnt know what I was in for. I told my doctor that there...
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Hi Bev. My names is Amy and I am currently looking into the possibilities of having IVF and PGD so that I can have a child without SS. I have discovered that...
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Hi All, Thiis is the awesome support groups for the anxious parents like me. My son was born with a cleft palate. which is associted with Pierre Robin...
Hi I have a 9 month old with SS. He doesnt have any eye problems as of right now. He does have mild/moderate hearing loss and has been since birth. Samuel...
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