I have permission from mother to post this info. 

I am working with a client with a 5 1/2 week old baby girl, who tested positive for Duarte Galactosemia (DG). This was confirmed with two newborn screenings, and one further lab work done that broke down enzyme and glactose levels. (Below is what the test results showed. ) So far, baby has been exclusively breastfeed, but the genetics counselor is telling her that every DG patient is automatically told to go on soy formula. She has not seen a metabolic physician yet, her appointment is Thursday, so we are trying to rather any and all information possible to see if she can continue breastfeeding at least partially.  At this point, the baby is showing no classical symptoms of Glactosemia, the mom has noted, however that she feels the baby is sleepier than should be, although baby is gaining weight normally. She was 9-14 at birth and at last weight was 10-15 (at 5 weeks).

So, the main questions that I have is:

Does anyone know of any research that points to EBF, or at least partially while supplementing with soy or lactose-free formula. 

If mom cuts out all dairy (including hidden) will this lower the glactose in her milk and make it easier for baby to process, and lower baby's Gal 1-P levels.

If all research points to mom having to use formula, is their one that is better than the other (in regards to soy or lactose-free)


Please post all info to entire group, as this is something that others may find beneficial. 

Thank you so much for any information you can share.

Lisa Mascio-Thompson
IBCLC



Enclosed is the information you requested after our call including the lab results on xxxx which confirms that she is affected with Duarte Galactosemia.
 
DNA : 2 mutations (N314D – Duarte variant and Q188R- classical mutation)
 
Gal-1-P level: 1.25 umol/g (normal is 0.00-0.20)
 
Enzyme level: 6.4 U/g (normal is 14.7-25.4)
 
Gal-1-P is high; therefore, it is important that she be switch to alternating between soy formula or some other non-cow based formula and breast milk.

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