STICKLERS SYNDROME&PIERRE ROBIN,

[Tracy e-mail, littlebear@]

We have two boys with sticklers( 8 and 9 ) , would like to hear from others,they also have pierre robin.Not many doctors here in canada that now much. one son has had his lower jaw extended but has not grown since then. Currently dealing with alot of orthodontics stuff(expanders, teeth pulling,C,B,J???.Both boys had cleft palates, one is still very hyper nasal(gets picked on alot at school)lots of jiont pain does it get any better????this is getting to be very emotional for all of us.ANY ONE WISH TO TALK PLEASE E-MAILlittlebear@telus.net

[Kent]

I can see by your e-mail that you are from my area. My sister gave birth 2 days ago to a boy with a unilateral cleft and hairlip. I have little knowledge about Sticklers & Pierre Robin, but will learn more about it i'm sure because i will be coming here often. In fact i want to know more about what you are facing and am planning to find out after i send this message. Obviously i have been clicking on ones about my nephew. The reason I am responding is to find out some info on the surgeons in Western Canada. We live in Edmonton. I also responded to wish luck to a fellow Canadian who is going through very tough times also. I'm gonna pray for your family that all goes well. I look forward to hearing more from you on here or by e-mail....kent.gregory@home.com


Take care and have faith

[Kent]

I went back to read your post and was saddened to find that you children get ridiculed. Children can be so cruel at times. This wont help you to hear this but after i read that i thought that with the technology we have right now my nephew may not get the hard times your children are receiving. it doesn't seem fair! I TRULY hope your family can start getting some positive results. I'm new to all this but plan on learning diligently. As i said i know very little, but you now have another set of eyes and ears on your team that is eager to learn.......i just pray that someday i can help you in some way....be it big or small..please take care.
kent.gregory@home.com

[KENT]

I IMAGINE YOU ALREADY KNOW THIS BUT IN CASE YOU DIDN'T....WHICH I DOUBT....HERE IT IS.....WWW.PIERREROBIN.ORG

[maria sherman]

my daughter has a cleft palate, and piere roban syndrome now sticklers. she is hyper nasal also even though her palate is fixed she is gonna have more surgery to fix the problem so she wont be hyper nasal.

[clydene email]

Well I have three girls first age 4 had pierre robin and every thing to do with Sticklers only not the heart problems from birth had the Trach to breath and the G tube to eat only about a year ago she got all that out and the secound girl is fine no disabilities showing on the out side inside is yet to be found. Test were done on the first and test came back to be just a number that it happen to her, Then thrid born just 4 months ago has all the same problems as first. Now how can it be the two girls land on the same number cant be. Now in the state of Hawaii we no longer have a genetic Dr. so now we come across the problem of how do we do this now not only for my husband and myself but knowing for the three girls future I dont think it will be fair to them if they went through the same thing that we are now not knowing any thing because parents never followed up with the problems. I want to know the most I can now they are growing fast ages 4 1 and 4 months before I know it they will be 18 and asking questions and I would feel alot better if I have ancwers for them. If any one out there is willing so share any thing at all about pierre robin and Sticklers Syndrome feel free to contact me. I'm open to all options because like I say my 4 year old is dealing with every thing right now the hearing loss, near sight, knock knees, soft cleft, also thescars of all the surgerys that she had. It will be nice to hear if the future gets brighter or worst from first hand people. People that is going through the same things.
Much aloha Clydene lhqd@bigisland.com