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My daughter was born with Pierre Robin Syndrome - Please
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Posted:
Thu Jul 29, 1999 3:44 pmby jeske4@triton.net
My daughter was born on July 2, 1999 with Pierre Robin
Syndrome. Feedings have become extremely difficult for us. I am
extremely frustrated and would appreciate any advise. If anyone
can provide me with more information on Pierre-Robin Syndrome,
that would be appreciated also. Thanks for your support.
Re: My daughter was born with Pierre Robin Syndrome - Please
Posted:
Fri Nov 05, 1999 2:53 pmby AN EXPERIENCED MOM
PLEASE TRY A LAMBS NIPPLE. THEY CAN BE PURCHASED AT FEED STORES, AND PERHAPS SOME DRUG STORES. THEY ARE LARGER THAN NORMAL AND THE FLUID BYPASSES THE CLEFT. HOPE THIS HELPS/
Re: My daughter was born with Pierre Robin Syndrome - Please
Posted:
Sun Nov 07, 1999 4:01 pmby Anonymous
Hi
My daughter was born in September of 1998, and diagnosed with PRS at birth. So far we have had some problems with feeding that we have overcome. If we can be any help please email me on
stymanr@mpx.com.auWe would only be too happy to share our knowledge and experiences with you and help you succeed in feeding your daugher.
Bella
Re: My daughter was born with Pierre Robin Syndrome - Please
Posted:
Sun Nov 07, 1999 4:02 pmby stymanr@mpx.com.au
Hi
My daughter was born in September of 1998, and diagnosed with PRS at birth. So far we have had some problems with feeding that we have overcome. If we can be any help please email me on
stymanr@mpx.com.auWe would only be too happy to share our knowledge and experiences with you and help you succeed in feeding your daugher.
Bella
Re: My daughter was born with Pierre Robin Syndrome - Please
Posted:
Thu Nov 18, 1999 7:03 amby Mandy Shore
Hi... I can understand how you are feeling... my son Jason was born on Oct.1, 99 with Pierre Robin and it has been a very difficult time as well. Have you tried using the Haberman Feeder? Please try it.... it is great! Hope things go better for you.... take care and good luck.
Re: My daughter was born with Pierre Robin Syndrome - Please
Posted:
Mon Aug 21, 2000 1:13 pmby jane
my daughter natasha was born september 28 1999 with prs. she was in hospital for 5 weeks and it was very difficult trying to feed her and learning how to insert her nasal gastric tube. it was a terribly emotional time. if anyone would like to write with advice etc. please contact
janeandnatasha@hotmail.comshe is the most lovely and happy baby and will be having her cleft repair operation this october which is a big worry for me.
Re: My daughter was born with Pierre Robin Syndrome - Please
Posted:
Mon Mar 19, 2001 1:47 amby wendyward@bigpond.com.au
MY SON BRADLEY WHO WAS BORN 18/11/96 HAS PIERRE ROBIN SYNDROME. BRADLEY IS NOW 4 YEARS OLD AND GETTING READY TO GO TO SCHOOL NEXT YEAR.
MY ADVISE TO YOU IS FEED TO HOW YOUR CHILD IS COMFORTABLE AND LEARN AS MUCH AS YOU CAN ABOUT THIS SYNDROME SO YOU CAN TALK TO THE DOCTORS ON THEIR LEVELS AND STAND UP FOR HOW YOU FEEL.
IT DOES GET EASIER, BRADLEY HAS HAD 4 MAJOR OPERATIONS AND STILL BEATHES WITH CPAP MACHINE BUT HE IS A WONDERFUL HAPPY AND HEALTHY BOY.....
GOOD LUCK