Dear Patty,
    You described the baby at 4 1/2 weeks diagnosed with CF and asked for
comments as to whether these babies tended to be more fussy or colicky.  You
also mentioned this baby was "content" but cried for "30-45 minutes" after
feedings. That confused me a little.
    Also, the mother's milk supply seems to be in question and her perception
is that he is still hungry.
    If he presented with meconium ileus at birth I am wondering if he had
surgery or a bowel resection?   Since he is taking pancreatic enzymes, she
could try dosing him before and mid-way during the feedings to make sure his
discomfort isn't stemming from gas and cramping from  malabsorption.
    If you have been following the reflux thread-that is another possiblity.
One recent study from Melbourne, Australia of 20 breastfed infants of 26
concluded 20% of babies under 6 months have a degree of GER.
    It has been my experience that these babies can be fussier because of the
gas produced by malabsorption and/or maldigestion, even when on enzymes.
Pancreatic insufficiency is progressive and enzymes should be titrated by
baby's changing weight to be most effective.
    The real bug-a-boo is to weed out what is CF related and what is just
baby crabbiness (and mom's focus on growth etc/vulnerable child
theory)..These babies also have higher caloric needs and many believe, higher
resting energy expenditures.
    Please contact me if I can be of any other assistance.  Good luck with
this family....remind her if the baby is fussy on her milk, formula would
probably be a nightmare (and breastmilk has the enzyme lipase built right
in!).  And forewarn her of  Pregestamil ("but it's predigested!") being
foisted on her if she mentions it to the docs.  Her best bet may be the GI
doc at her CF center.

Heine, Button et al . Gastro-oesophageal reflux in infants under 6 months
with cystic fibrosis Arch Dis Child 1998: 78:44-48

Jan Ellen Brown RDH IBCLC
Charlotte, NC

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