Lactnetters,
     A client who has a 3 week old is concerned because her daughter has
undergone three tests for what the parents think is blood levels of an
enzyme involving glucose and the ped has told them the test is
"positive".  The first one of these blood tests was messed up, the second
was "positive", so they have now done a third test to verify the result of
the second.  According to the mom, the test (done in VA) is a "new"
addition to the routine newborn screening tests.  They are now anxiously
awaiting another test, which they say is genetic, within the next couple of
weeks.  The parents are clearly upset, but are unclear about what tests
these might mean for their baby.
     They asked the ped. what the treatment would be for the baby if the
genetic test is "positive", and he replied "soy abm" because lactose in the
baby's diet would be a danger to the baby.  The mom asked the ped what
symptoms to watch for, but she can't remember being given a definitive
answer about that.  In the meantime, they are waiting for two more weeks,
and the ped. did not tell the mom to temporarily wean from the breast until
the results are in.
    The dad mentioned lactose intolerance, but when did lactose intolerance
become life-threatening?  I can't imagine screening for that, but I bet the
formula companies would love for parents to be think that lactose might
harm their babies so they (abm companies) could rush in to "save" babies
from the "danger" of lactose.  I've already seen plenty of cases when gas
has been "treated" with a trial of lactose-free formula.
    Is this screening for galactosemia?  If so, is screening for it
routine, or would there have been a red flag?  What's the window with that
condition before a baby is at risk from brain damage and bf must be
discontinued?

Thanks for any insight.

Sara Reuning, MS, IBCLC in Bristol, TN

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