hi, my name is Mandy and I have a son, Little Dean, who has prs. He is 7 weeks old. I have never spent so much time in hospitals in my life! We spent 9 days...
Hi mandy - i was born with prs 35 years ago, and i have sticklers syndrome. There is a very good site you could try, www.pierrerobin.org this should help you...
well i have been off-line for a while but am back now - i hope everyone is well and a big hello to the new members. i am still waiting the orthopaedic surgeon...
my son is 11 weeks old and has prs. he also has a button, but no trach. he doesn't have a bridge to his nose and has wide set eyes. his speech therapist...
Dear Mandy, Firstly welcome to this group. Sticklers is an inherited fault on a collagen gene, it is often associated with prs and cleft palate. Classic...
Dear Mandy, Firstly welcome to this group. Sticklers is an inherited fault on a collagen gene, it is often associated with prs and cleft palate. Classic...
hi val - i am fine at the moment, still waiting to see my new surgeon about new hips (surface replacements, Birmingham hips) and have seen an eye doc today...
HI, Im new to this site, but i have 2 children with sticklers and the cleft palates. my daughter was in the NICU for 6 wks, they did a new surgery on her, (she...
Hello Sara - if you try the widesmiles web site - do a search for the address i'm sure someone there will be able to help you. best of luck with your daughter,...
Hi Megan - welcome to the group - i'm afraid it is quite quiet here but hope to meet you soon how old are you, and what symptoms of sticklers do you have? love...
Hi, this is Mandy and I had the 7 week old with prs. He is now 5 months old and doing very well. He has a g-button and although he is still not thriving as...
I have 2 nipples and only one ring thing...if you want to e-mail me privately, I can send them to you. I get mine for free through the cleft palate clinic. I...
Hi there, thought I'd have a nose at this group and see what yous are like :) I'm Fay, 25 married to Steve with two kids, Éile who is 3yrs odl and Brendan who...
Hi there, we used habermans with Brendan. I don't know if where you are, but if you're in the UK I can give you the details of where to get them :) Fay xxx ......
Nice to meet you. Where in the uk are you? I am living in Wales on the shropshire borders but am originally from Wirral. I was also born with prs and have lots...
Last wednesday, I took Little Dean to see the opthamologist, I was expecting a clean bill of eye health. Instead, the doctor told me that Little Dean is...
Awhile back I had posted that my 5 month old baby needed glasses...well, now he has them and I posted a picture of him and another picture of him and his...
Hi to all..my sorrow goes out to all of you who were cursed with this..my name is Meggan and i have stickler syndrome..i was diagnosed with it in 1994 when i...
I just wanted to let all know I have built a Stickler's Outreach page, in the hopes of connecting with those affected with Stickler's on the West Coast,...
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...
