Hi, I'm Mandy and my son Dean is now 6.  He has pierre-robin sequence and
marshall's syndrome (which is very close to sticklers).  I remember feeling just
the way you are...its horrible!!  But, there is hope and things should hopefully
calm down for you!!  I live in Florida and I drive about 5 hours to visit our
craniofacial team...that is what you will need.  Also, if there is a Ronald
McDonald house attached to the hospital you are at, do everything you can to get
a room...they ask for donations only and you will have a "home" while your baby
is in the hospital.  I can tell you that this first year is very rough...you are
at the absolute hardest today and it will get easier day by day.  Try to stay
upbeat, and realize that everything will be okay!!  Sticklers syndrome is a
connective tissue disorder and pierre robin sequence is a result of the
sticklers syndrome.  As far as feeding issues...ask for a speech therapist to
start working with you
immediately.  You need to use a pacifier (mams work well for the u shaped
cleft) when baby is feeding.  You want to avoid what is called "oral aversion". 
Basically this means you want baby to always associate using the suckling motion
with getting his belly full.  You might want to ask about a G-button.  It is a
feeding tube that goes directly into babys tummy from outside the belly.  Also
ask the nurses to allow you to breast feed (or at least try if you had planned
to...there are devices that can be used like a tube that you run along your
breast or even finger that simulates normal feeding).  As far as how baby should
lay...on his belly.  The reason for this is that his tongue will tend to "fall
back" and constrict his airway.  Some babies end up with a trach (tube or button
into the wind pipe).  I didn't have to go through this but I know of other PRS
babies that had them.  They aren't able to vocalize very well, if at all.  Some
babies
need apnea monitors, I chose to let Dean sleep in my bed and we avoided the
monitors and the trach.  I spent 3 months sleeping in an upright chair, well
Dean slept and I very lightly dozed anyways, LOL!  Trust your instincts...It is
true that mommy knows best!!!!  Please feel free to e-mail me away from the
group and I will give you my phone number.  The most helpful people to me when
my son was born was not the professionals (and there were a TON of those) but
this group the the Pierre-Robin Group on yahoo groups...you are fortunate to
have found these groups so fast...it took me a few months!
Much Love and I hope this helps,
Mandy Gianotti
--- On Thu, 4/16/09, calientecrystal <calientecrystal@...> wrote:


From: calientecrystal <calientecrystal@...>
Subject: [Stickler Syndrome ] hELP!
To: sticklersyndrome@yahoogroups.com
Date: Thursday, April 16, 2009, 1:26 PM








hI MY NAME IS CRYSTAL AND MY SON IS 24 hOURS OLD AND HAS BEIN DIAGNOSED WITH
STICKLERS, hE HAS A U SHAPED CLEFT PALLETE AND SMALL CHIN ETC. HE IS ON
BREATHING TUBES, HAD TO TAKE OUT FEEDING TUBE DUE TO BLOOD IN THE STOMACH WHICH
HAS STOPPED BUT THEY DONT KNOW WHAT HAS CAUSED IT. i;M A MESS AND WOULD LIKE TO
TALK WITH SOMEONE OR PEOPLE THAT HAS BEEN THREW THIS AND CAN HELP ME GET THREW
THIS TIME. ALSO ANY SUGGESTIOND ON HOW TO LAY HIM SO HIS AIRWAYS WILL OPEN UP
BETTER WOULD BE GREAT!!



















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