There are two treatment strategies with PKU in bf infants, one is to 
start adding lofenalac (low phenylalanine formula) until phenylalanine 
levels come down to normal, the other is to feed only lofenalac until 
phenylalanine levels come down (causes a more rapid drop) and then add 
back breastmilk (or regular abm) until the baby's phenylalanine levels 
are in the normal range. Mom could potentially bf from a pumped breast 
with a Lact Aid or SNS of lofenalac, and maintain a breastfeeding 
relationship, but docs are generally less comfortable with this 
approach, since it's harder to measure the amount of breastmilk 
consumed.  Of course, one could use a digital scale and weigh the baby 
and the filled LA/SNS container, then weigh the baby and the empty 
container, and the difference is the amount of human milk consumed.
I hope you can be a great support to this mom, who must be really 
worried and shocked right now.
Catherine Watson Genna, IBCLC  NYC

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