I posted a couple of weeks ago about an 11 month old with FPIES. I want to
post updates here so information can be found in the archives since so
little information is available.
http://fpiesfoundation.org/

First of all, the information I posted was not complete as I am not
involved in the healthcare side of things with this family. I am a
Breastfeeding Peer Counselor at WIC. I've been in a supportive role with
this bf dyad.

Allergist agreed for mother to continue bf without introducing formula.
Baby passed her first food challenge with bananas. They will now continue
with this food trial for a few weeks before it is considered a "safe" food.
Sometimes FPIES reactions come much later.

They want to put baby on Vitamin D drops but they all have caramel color
which they don't want to offer. If anyone knows of Vitamin D w/o caramel
color, please let me know, pharmacist has not been able to locate. I've
suggested Mom have her Vit D level checked considering the possibility of
supplementing Mom instead of baby.

Mom asked if there is a way to increase the protein content of her milk.
I'm not aware of a way to do this. They are concerned w/long term protein
intake. They are hoping to get a protein source as a "safe" food eventually.

Since dairy is a common trigger for FPIES, I would think that beef should
be avoided as well. Does anyone agree or disagree?

Thank you to those that responded and offered information, opinions and
support. The community we have here is invaluable. You helped empower a
family during a very difficult time.

All the best and so thankful for this list.

Allison Laverty Montag BA, IBCLC, RLC
Wisconsin, USA

-- 
"Our doubts are traitors and make us lose the good we often might win, by
fearing to attempt."
William Shakespeare
Measure for Measure

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