Dear Kathy:

I am aware of a dietitian who worked with a mother of a PKU infant who
breastfed for about 8-9 months, I think.  I was unable to reach the dietitian
tonight (she no longer works at Childrens).  I believe that they planned to
write up the case study and publish it.  I will try to get the citation for
you.  Also will see if the mother is open to corresponding with another
mother in similar circumstances.  I do know that they used PHE-free formula
so that the baby could get more HM.  I got references from your book for
them, initially.  The dietitian had consulted with other metabolic dietitians
who told her to have the mother wean (!!).  I was delighted that she
(dietitian) chose to call me instead so that they could preserve the BF
relationship.  (This happened a couple of weeks after I spoke at the local
dietetic association meeting on Breastfeeding in a bottlefeeding world.  That
was another story and will be told another time....)

Do you have the article "Breast-feeding in the management of the newborn with
phenylketonuria:  a practical approach to dietary therapy from JADA " 1994
94: 305-9.

I will keep trying to get in touch with that dietitian.  I also can try her
replacement at Childrens.

I would think that dietitians who work in metabolic clinics would be aware of
the food end of things.  It is one of those things that you don't learn
unless your job requires it. (mine doesn't).

Martha Grodrian Brower RD LD IBCLC