Betty Crase (then, the Director of
the Center for Breastfeeding Info, now at the AAP)
emailed me to inform me
that there was NEW research (publishe about the same
time as my article)
housed at the CBI (now run by Carol Kolar, I believe)
stating that
Galactosemia is NOT an absolute contraindcation to bf.
The solution
proposed in the new research (sorry, I cannot find the
citation, but I bet
the CBI has it or you might try Betty Crase at AAP)
leads us in the
direction of having moms pump formilk to reduce the
galactose content and
then give baby hindmilk and perhaps giving
supplemental enzymes.
------------------------------------
Chris- I spent some time looking into this after
hearing rumors of the supplemental enzyme possibility,
and got *nowhere*. Well, almost nowhere.
There are two forms of Galactosemia- classic and
Duarte'. Classic is generally assumed to mean there
is *no* enzyme activity (lactose -> galactose ->
glucose) and breastfeeding is considered to be not
possible. Duarte' can have very limited to very high
levels of enzyme activity so it is important to
measure the actual enzyme activity- as well as to know
which form of galactosemia is present, through genetic
screening. If the parents both possess the trait or
have had a previous child with galactosemia, they can
sample cord blood for the enzyme.
If you look further on the LLL website there is/was an
article by a mom whose child had Duarte', she
breastfed and introduced solids earlier than she would
have otherwise. Her child is healthy.
wrt enzyme digestion of pumped milk or
supplementation, I wasn't able to find anything in the
literature. I spent some time on a galactosemia
message board, and was mostly severely flamed for even
suggesting that this option might exist- many of the
parents seem to feel a great deal of anger at human
milk and wouldn't be willing to try it at all and
suggested that I had a wish to kill babies. :-( I
emailed and called as many physicians and geneticists
who were mentioned on the board as I could, but got
the usual "there is no benefit to breastfeeding
outside of 3rd world countries, just give soy". I
eventually found someone who runs a British website
who had heard of it, but could provide no references.
I can dig her up if you're interested in persuing it
further- or you might want to check the archives. I
felt very burned by my efforts and am not sure I want
to go back to that area of research right now, but
I'll certainly help anyone who wants to.
My Advantages of Formula site may have some links, but
I might have removed them when I re-worded my
paragraph on galactosemia. As always, input is
welcome. (I hope all this is clear- my placenta is
pushing on my brain, and I'm awake too late waiting to
finish playing Santa- IOW- my daughters need to be
sound asleep before the presents come out!)
=====
Kate Hallberg, mom to Ursula (6!), Sage (3) and "Cinderella" (1-6-01)http://www.cs.colorado.edu/~kolina/ Ideas that need venture capital: How about a DVD-based, flat screen LCD video unit embedded in a granite tombstone, for perpetual replay of highlights of the dearly departed's life?
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