I've searched the archives and found several queries about duarte variant galactosemia, 
but other than one short response - no details about it that answer my questions...


I have a mother friend who has 2 children - child #1 has duarte variant galactosemia 
(10% enzyme function) and youngest does not. Both she and her husband carry the gene 
(she said her husband is 70% and she is 50% - although I don't know enough about this 
to know what that means).

They use a specialist at Shands Hospital in Gainsville, FL. The standard procedure when 
they have another child will be to delay breastfeeding until the newborn screening results 
are back - Is this absolutely necessary? Is there any testing that can be done in utero to 
find out if any subsequent child is also this form of galactosemia?

Her first daughter nursed exclusively and is still nursing at almost 4 years old... We were 
just talking about this the other day and she mentioned it and that she really doesn't 
know as much about it from a breastfeeding standpoint as she'd like. 

She never eliminated dairy from her diet while exclusively breastfeeding, so the amount 
of enzyme her daughter is producing was sufficient to allow her to develop normally. I 
just found it odd that in all the counseling she received about eliminating all sources of 
dairy from her daughter's diet for the first two years (then they retested her) - no one 
ever mentioned her eliminating dairy from her diet as well...

please contact me off-list as I don't get a chance to read on the forum much these days. 
Too busy chasing still specialists for my little boy....

thanks!

Anne Hinze
[log in to unmask]

Lactation Educator and Counselor
Niceville, FL

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