ellen, yes, you have hit all the nails on the head with this case.  All of
the questions you raised are troubling regarding this baby diagnosed with
"borderline" galactosemia.  The fact is that this case is not presenting
like the classic condition described--the baby seems fine.  The level of the
enzyme that "digests" galactose has been tested, and is indeed lower than
normal.  There seems to be no information available on this type of case,
where the tests are apparently true positives, but the baby appears healthy.

You can see that the decision as to diet would be clear cut if the baby were
either severely galactosemic (cut out all milk, stop breastfeeding), or were
definitely not galactosemic (continue to breastfeed).  But there seems to be
no basis for treatment of this in between condition.  The mother somehow
needs some information on which to base her decisions, or some guidelines
for treatment that let her know how much breast milk is safe.

Based on common sense, it seems to me that she should continue to
breastfeed, because of all the benefits it provides, as well as because of
this baby's dependence on it.  At the same time, they should monitor the
child's blood galactose levels regularly in order to decide if the diet of
breastmilk plus solids is working.

Can any of our physicians shed some light on this?

Margaret K.K. Radcliffe               [log in to unmask]
Dept. of Mining & Minerals Engr.
Virginia Tech, Blacksburg, VA