As some of you may recall, I posted earlier this yr about an infant born
with Turners Syndrome.  This is a chromosomal disorder (all TS babies are
girls) which presents with some physical anomalies at birth (puffy,
misshapen feet, widely spaced nipples, large, rather low-set ears, channel
palates) and results in very short stature and sterility in adulthood.
Feeding problems are associated with the disorder.

I always follow my unusual cases forever because I learn so much from them.
I went to visit the mother and baby yest. as the baby (now 9 mo) has only
gained 1 oz per week for the last 13 weeks, and gained nothing during the
last week. She is currently 15.15oz. The MD is concerned, and has been
pushing the addition of solids.  She has not suggested formula.  Mother has
always been a poor pumper, and baby is very reluctant to take solids.  She
also hates formula.  I did a test weight for what mother described as a very
typical feed, and the intake was very low -- about 2 oz.  Baby is a fitful,
distractable nurser, teething, typical for this age.  She feeds about 7 x a
day.  The problem is that I feel some pressure to maximize all this child's
options for available growth.  We spent several hours prowling around the
kitchen looking for ways to add calories to the  diet.  Baby will take about
1 tbsp. of vanilla flavored live-culture yogurt.  I added 1 tbsp. of canola
oil (which contains 160 calories) to this and she ate it right up.  But I am
not versed in dietetics.  Is there any advantage in terms of her growth or
any risks in terms of feeding this to her?  Are these advantageous calories?
We tried egg yolk, meat, etc and all refused. TS babies often have issues
with textures (gagging easily.)

 I pumped mom and obtained (as she described) very little milk.  However I
have suggested she begin post feed pumping at least 5x a day to augment
stim. to see if we can supplement with hindmilk or at least use some hind
milk to cut the taste of formula.  Milks are more calorie dense than cereals
and fruits and veges which MD is suggesting.  I can't see that they would be
as advantageous as something denser.

I would be most grateful for any advice from the astute RDs on the list.  I
am, of course, referring this mother to a local nutritionist.  The
nutritionist is a client of mine and is married to a gastroenterologist.
Baby needs ref. to gastroenterologist too.  I am hoping to get everyone
paired up so they can talk about the baby over dinner and really be
interested in her.

Developmentally baby is great -- all age appropriate and charming. Healthy,
as one would expect except for the very slow growth.
Barbara

Barbara Wilson-Clay, BS, IBCLC
Private Practice, Austin, Texas
Owner, Lactnews On-Line Conference Page
http://moontower.com/bwc/lactnews.html