I have a friend, who lost 3 children to galactosemia back in the 1960's
when I presume less was known about this inborn error of metabolism.

I have noticed 2 posts recently, which mentioned galactosemia in a way
that I don't think reflects the correct understanding or the seriousness
of the condition. I wonder if anyone else reacted in the same way. I feel
it is imperative for the LC community to understand a little more about
it.

<It's very rare for a baby to have primary lactose intolerance
(aka galactosemia)>

I questioned this privately with the poster, and was unsatisfied with the
reply and the website given, which BTW was a perfectly great website
article about lactose intolerance.

Of course, there was absolutely no mention of galactosemia, which as I
understand it, it involves genetic lack of a completely different enzyme
than does primary lactose intolerance.

It seems to me to be far too serious a condition to be cavalierly
"lumped" together with even the rare primary lactose intolerance, let
alone any lactose intolerance that is secondary, temporary or due to
imbalances in the lactose load among our clients that are so commonly
misunderstood by mothers and HCP's alike.

< The mother who is now breastfeeding - or was - is being screened for
> galactosemia . . . . .>

I have been trying to look up more about it in Lawrence and Lawrence,
which, on p. 524 even has a section about a mother with the condition.

But my limited understanding of chemistry doesn't get too far past
galactose as a component of the disaccharide lactose, and into the
chemical names of the enzymes before I begin losing the larger picture.

Given it is potentially fatal if not discovered and breastfeeding
stopped, I would like to have a correct understanding of the condition as
it might come up in caring for breastfeeding dyads. I will continue to
read, but I would also like to hear what others know about it.

Jean
**********
K. Jean Cotterman RNC, IBCLC
Dayton, Ohio USA

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