If one had a mother who had a baby who previously showed a positive for the 'galctosemia' on the newborn screen but is now known to have the Duarte Variant, low levels inlabs for Gal-1-p, what would you do with the second baby? If this said 'first baby' had no s/s of reactions to berastmilk typical to galactosemia babies but said baby was discontinued from all breastmilk once newborn screen came back prior to family knowledge of the possibility that there are variations in galactosemia, levels for Gal-1-p, and they can get lab done that are now more sophisticated. 

For potential second baby would you have special labs ordered at birth and where would you get them from, names of labs also would be helpful. For second baby would you withhold breastfeeding knowing that first baby had low levels of Gal-1-p and was duarte variant and no reactions...or would you advise breastfeeding with close monitoring for the immediate negative reactions that 'true' galactosemia can create? (My thought is the risks of not breastfeeding outweight the risks of breastfeeding given the history and chances, but what do I know :) )

Any advice on this would be helpful and guidance towards a geneticist in LA or San Diego would be great as well. I am interested to hear what the neonatologists have to say on this one as well (Dr. Nancy Wight?)

I read the article in clinical lactation and enjoyed every word of it, but more 'physician' resources (in person or email or phone) would be greatly appreciated. http://www.clinicallactation.org/content/galactosemia-and-continuation-breastfeeding-variant-form

Thank you again,
Lisa Weinshenker, RN, IBCLC
Las Vegas, NV
((Current in 1990 (see I advanced us by 5 years for the moment:) ) )

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