Dear Heidi,
I have had one experience in 2001 with a baby diagnosed with Duarte
Galactosemia and mom went on to breastfeed exclusively. At the time I communicated
with Drs Newman, Wight, Gartner, Smillie and Dermer, all of whom said that
exclusive breastfeeding is usually possible as long as galactose levels in the blood
are monitored. I have saved all the correspondence from the above mentioned
docs, as well as info from other Lactnetters. I'm including your entire post
as I didn't see any responses and perhaps others would like to chime in, too.
If you wish to discuss this further with me, feel free to email me privately.
Barbara Latterner, BSN, RN, IBCLC
Date: Thu, 31 May 2007 09:29:26 -0400
From: Heidi Chavers <[log in to unmask]>
Subject: Duarte Variant Galactosemia
Dearest Wise Ones, Physicians, Nutritionist
I have permission to post regarding a family I am currently seeking help =
and information for.
This is mom's 2nd baby. Her son, and first child had significant jaundice =
up to the 20's his first week of life. She nursed, and pumped and was =
able to resolve it well. He is 18mo old now, and tandem nursed.=20
Sweet little sister, born at term good weight, uneventful, fast labor & =
delivery, no meds. Started off breastfeeding with a bang, did not have =
the cephalohematoma her brother had and breastfed well back to birth wt =
within one week. Mystery bili up to @ 19, mom kept breastfeeding during =
readmission with phototherapy. It resolved slowly, then went back up =
significantly. Absolutely no other symptoms other than elevated billi.
In the mean time, the Metabolic screaning for galactosemia came back =
positive. Due to the Florida summertime heat, the Dr. had it repeated to =
eliminate false positive. Her physician instructed her to discontinue =
breastfeeding immediately and begin using soy. After third test came back =
it revealed the Durate variant, which seems to have different and perhaps =
less severe overall consequences and long-term impact. It seems that some =
with the variant actually improve their enzyme production capabilities to =
the point of being able to eventually have an unrestricted diet after a =
year or so.
My question to you all is if any of you are aware of long term studies =
demonstrating the safety of offering some breast milk and or use of =
Nutramagin vs. soy.
Mom is a nurse practitioner and is very conscientious. She would like to =
avoid soy if at all possible but does not want to jeopardize her baby's =
health. The "Metabolic Nutritionist" she spoke to was not able to really
provide much in the way of information other than to give Soy.
(That answer just doesn't feel right.)=20
The Mead Johnson website info on Nutramagin lists use for baby's with =
galacotsemia.
Because I have never counseled anyone with this concern, I am calling to =
all who may have experience with this situation.
Mom has continued to pump to preserve her supply. She does have a one =
month old and an 18 mo old though.=20
She has asked me to find out if the amount of lactose she consumes has an =
impact on the amount in her breast milk.=20
Would using something like lactaid nutralize the lactose in the milk she =
consumes or that of her baby? Is there any way treating her milk with =
lactaid or something else could make it acceptable for baby to consume?
=20
We have read the article linked to LLL from Kellymom.com. which seems very =
encouraging but the question of continuing with breastmilk, vs. use of =
Nutramagin or soy is heavy as she does not want to compromise her baby's =
health.=20
I just want to make sure I am not missing any knowledge and experience =
that might shed more light to help this family feel good about their =
decisions.
Thanks to all who care and share,
blessings,
Heidi Chavers RNC, IBCLC, LMT, CIMI, LCCE
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