Pierre Robin Syndrome

[Heather at andrew@nltc.ne]

I am a therapist seeing a 5 week old child with Pierre Robin
syndrome and need some information on feeding difficulties--any
information would be great--please e-mail me at andrew@nltc.net

[stymanr@mpx.com.au]

Dear Heather,



I am the mother of a 5month old child with Pierre Robin
Syndrome. I am not sure what in the way of feeding difficulties
you require help wiht but i am more than willing to help in any
way that i can. If you have the questions i can answer them to
the best of my ability. We have suvived the feeding difficulties
and are now a successfull feeding team.



Isabell

[djgreen@jps.net]

I have a 4 1/2 month PRS baby and have been to heck and back
with feeding problems and finally found a way to feed my son with
a Haberman feeder holding his face. Then a month later the
cranialfacial team at Lucile Packer Childrens Hosp. said he has a
mild form of PRS. And I had figured it out alone If I had gotten
my appointment sooner they could have helped. So needless to say
I Have tried many different ways to feed. If I can share my
experience with anyone I Would LOVE to do so, so that my
knowledge is used and not wasted without sharing.