Hi there, I know how you feel, i to am here in Australia, and it feels as though we are the only ones, can be difficult at times. I have a 4 year old daughter,...
I am a 35 yr old mom of 2 (1 son, who is 4 and a brand new daughter that is 1 month old). I was diagnosed with sticklers while pregnant with my daughter. She ...
Hi Jennifer, I have a little girl also with PRS and sticklers, Kait has been tube fed her entire life to date, she is nearly 5 years old. We have probably had...
Hello!!! Our daughter also has a g-tube. She has had one her whole life. She was born with a bi-lat cleft and PRS. She has always had the mic-key button...
This four step guide will give you the foundation you always wanted. Learning the basics in handling stocks. This guide will help anyone, interested in getting...
I want to thank everyone that posted and replied. It's so nice to know that I am the only one that has a child with a mic-key. Now, for my question..... How...
Hi Jennifer, There should be a bolus feeding tube that comes with the mic key set, i generally vent Kait first, by attaching the tube along with a 60cc tube...
Hi I have a 5 month old little boy who has been dignosed with stickler syndrome. I have been told that it runs in his fathers side of the family but I have...
... Hi Carole I am Amy, the best thing I would suggest is just use some good search engines and put Stickler syndrome in and you should have lots of sites come...
Hi everyone. I am Amy and new to the group. I was wondering if anyone out there who had been diagnosed with SS before having children had discussed the...
Hi How good is it to have someone to chat to in the UK about SS as most people I have found are from Aus or USA and their way of treating people id so...
I have a 4 month old with SS also. He got it from his fathers side as well. His eyes seem good at the moment but he has low frequency hearing loss. He also...
My name is Sarah and my son Ryan has PRS and Stickler. He is now five years old. Ryan has had the mandibular distraction (at 3 weeks old) that brought his...
... weeks ... trickiest ... may ... had ... there ... hi sarah, my daughter, now 19 was born with a cleft palate, PRS,and stickler syndrome.My other daughter,...
Hi Sarah! I to live in Indiana. I sure don't know of any support groups around here. I have 2 daughters with Stickler. I also have it as well. My oldest...
Thank God I am not the lone one in the state! Right now Ryan's care has been at Riley. While I find a certain measure of relief that they are familiar with...
Hi Debby I am so glad I am not the only one! Is she still having platelet issues? When I saw Ryan begin to bruise it was a very scary thing. We were still so...
im from indiana i dont know of any support groups email me at valeriemartin5@... ... Check out the New Yahoo! Mail - Fire up a more powerful email and...
hi carole. glad you found the info, that can be most useful. Are you on about wendy hughes' book? i have not actually read it bt can highly recommend it and i...
Hi Sarah and Heather, I also have a form of SS. I am 43 and live in the Chicago area. I was diagnosed with it when I was about 29 or 30 as I developed...
I found a best place for Older Women and Younger Men, or Older men and Younger women to interact with each other. Generation gap is not a problem here, but a...
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...
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