Babies who are breastfed with PKU before diagnosis, and continuing after 
diagnosis along with low phenylalanine formula have higher IQ's than 
those who receive standard formula before and with low phe formula.

There are several ways to help the baby get the low phe abm in the right 
amounts:

- feed it at breast in a supplementer
- give some breastfeeds and some low phe feeds (at different feedings)
- use test weighing or examining the baby's swallowing pattern to figure 
how much human milk she's getting at breast. The first MER usually gives 
about an ounce, according to research done in Peter Hartmann's lab. (1.1 
to 1.3 oz). Mom can control the amount of milk the baby gets by watching 
for the MER and the slower, deeper sucking.

A good IBCLC should be included on the team caring for this baby, 
because other HCP's don't usually know these things are options. Often a 
lot of low phe formula is required in the first few weeks to get the 
baby's phe level down, and then more human milk can be given. It's 
important that mom does some pumping to calibrate her milk supply 
properly with this in mind. And of course the baby needs to learn to bf!

Catherine Watson Genna, BS, IBCLC  NYC

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