Just a note to all lactnetters to confirm the need for severe carefulness
regarding poor or no weight gain in the breastfed baby.  I had two children
with cystic fibrosis before any doctor would take me seriously about poor
weight gain!  If someone had listened to me (5 pediatricians later) and
paid attention to the symptoms (copious poop, stinky poop, ravenously
hungry baby, poor growth) maybe my breastfed babies would have been
diagnosed before 4 and 2 years of age.  By that time they were both under
0% on the growth curve.  And I am NOT small nor is my husband.  Remember,
though, that many pediatricians still think its not a good idea to
breastfeed a baby with CF.  And that is not what the recommendation is by
the CF docs who are well educated, the babies do need special care, but
actually do better (duh...) on breastmilk.

So if you refer a patient to a doc. and the baby turns out to have CF,
don't stand for it if the doctor says the baby needs to come off the
breast.  Find a second opinion, at least, or send the mother and baby to a
certified CF center.

libby, mother of Peter, 12 y/o with CF and Roy, 9 y/0 with CF

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