In a message dated 97-03-18 15:02:12 EST, you write:

<< Date:    Tue, 18 Mar 1997 13:48:43 -0600
 From:    Brenda Lee Hoverson <[log in to unmask]>
 Subject: PKU and breastfeeding

 I would appreciate it if anyone can give me any information about
 breastfeeding and PKU. Has anyone been able to successfully maintain
 breastfeeding with a PKU infant? My interest being my niece was diagnosed
 with PKU in May. Her mothers wish was to breastfeed and began doing so.
 But because of the disorder of Kaylin and the fluctuation of her PKU
 blood levels she quit. My goals is to find out as much as possible so
 that mothers of PKU infants could maintain and continue to feed their
 infants.
                         Thanks for your help,
                         Brenda Hoverson >>

Dear Brenda,  I had my first encounter with a baby with PKU this year.  The
neo who is treating her is very probreastfeeding and initially had her
pumping so they could calculate the percentage of EBM to the special formula.
 They do regular blood sampling to watch the levels.  After about 4-6 weeks
they started letting her breastfeed in the am's and pm's and use the special
formula during the day while she's at work.  This particular mom-dad-and baby
are doing super and I can't say enough about the doc.  Some of you may
remember my post some time ago about the baby with citrulinemia (inability to
process the amino acid argenine).  He also has the same neo and likewise has
been maintained primarily on EBM.  Hope this helps.
Liz Flight, RN, CLE, IBCLC  in sunny Jacksonville Florida