Pierre Robin

[sbbrunn@aasdcat.com]

My daughter is 8 weeks old and has PRS. She is currently using
a Haberman feeder and improving but very slowly. Whatever she
doesn't take by bottle, we give her through an NG tube. I am
looking for any suggestions anyone might have for feeding.

[Nancy B]

Hi, I have an 11 year old son with PRS. Feedings are very
tough, because the baby wears out so easily. She will continue to
improve and take more by bottle, but it is a slow process. We
used the Mead Johnson Cleft Palate Nurser and made the cross cut
lines longer and squeezed it. David also used a sippy cup, which
we punched more holes in, for a long time. Many of these babies
end up with g-tubes just for these reasons. It has been a long
time since I faced feeding issues, but I will ask some other PRS
moms of younger kids for their input and post my results here.

[gram@aol.com]

I am a 66yo grandmother w/cp,cl repaired. Several ofmy
children and 2 of my grandchildren have cleft palate/lip to
varying degrees. I am mistified by the diagnosis of Pierre Robin
Syndrome. Is this something new? One of my daughters had a great
deal of respiratory problems when an infant and was in the
hospital 12 times w/in 2yrs. I took my girls to a clinic here in
Milwaukee especially for Cleft Palate children but never heard
about PRS. The daughter I am referring to also had eye problems
and a rather small chin which was added to as a young adult. She
is 40yr old now and I'm wondering if she would have been
diagnosed w/PRS if she had been born recently? I find this
website very interesting and unfortunately two generations
late.Regards to all.

[rkelli2532]

When my daughter was on the n/g tube I was using breast milk
which was fortified with powdered formula (1 1/2 tsp per 100cc).
At about 8 weeks she began having problems with acid reflux
(which I hear is common with PRS), and began using zantac and
Malox. She's now 4 1/2 months, off of the ng tube, and gaining
weight slowly with a few really great spurts. She's a peanut, but
4.5 lbs over birth weight.



I here that PRS kids are slow growers, and the feedings are a
challenge, but we're a real feeding team now and things are
getting easier!

[bella]

Our daughter was born with PRS 9/7/98. She was feed by a tube
for 3days, but we made a decision, not to allow this to continue,
as in the long term it can be detrimental to the development. It
was alot of hard work and a long time, but she now is feeding
with a chuchu teat, with no assistance. It took 3 months before
she regained birthweight. We had to fortify her formula to 30
cals per ounce, and have only recently cut it down slightly.



The decisions you are faced with are not easy, but look at
the long term outcomes. Tube feeding in any form is not good,
because it retards the development of the lower jaw, prolonging
hte problems. Also the childs system grows dependent on these
methods and become lazy with there sucking (why suck when you can
get a full stomach with no work) Our daughter did for a while.



The other thing to consider is does your child really require
these extra traumas.



In Australia we have what is called Queensland bottles, which
are soft enough to squeeze along with chuchu teats. The teat has
a hard top, which creates a psuedo palate. All that is required
is a chewing motion, or a sucking motion if your child has
one(something that tube fed babys do not develop). The bottles
are soft, so that as the baby is sucking on hte teat you can
squeeze the formula into their mouth. It works well, and gives
the baby a good start for post surgery feeding.



It is alot of ahrd work but it is worth while.



I hope this all helps in some way, or atleast gives you some
more to think about.



If there is anything else i can help with just email me at
mad-one@excite.com