Perhaps the story of Lacy Smith can be of some reference:
http://news.google.com/newspapers?nid=861&dat=19870104&id=XMBdAAAAIBAJ&sjid=JV4NAAAAIBAJ&pg=6504,764556
She had more complicated problems than FPIES, or at least other problems in
addition to FPIES, as far as I understand.
I recently looked up for news and she survived on BM alone for at least 8
years, after that there are no further news.

This does not answer the question of the superiority of BM vs Formula, I'll
leave that to someone more knowledgeable than me, but gives an idea that it
is possible.
The bottleneck is the quantity of BM required, that, when the child grows
up, is met with difficulty by the mother's production alone.

I had contact with a mother of a 2 yo child with FPIES and he gradually was
able to introduce some simple food to his diet.
We can hope that this will happen for this child as well.

My best wishes for a difficult situation.
Micaela
Italy


On Tue, Nov 12, 2013 at 6:58 PM, Allison Laverty Montag <
[log in to unmask]> wrote:

> PTP
>
> I've posted several times in the last few months about a baby with FPIES
> http://iaffpe.org/
>
> The child is now 13 months and exclusively breastfed.  She has failed every
> food challenge. She recently failed her food challenge with Elecare. Within
> 2 minutes of pooping her diaper her skin was blistered and bleeding.
>
> Mom is being pressured to continue food challenges, they want her to try
> Neocate. The main reason is that if something happens to Mom, they need to
> have an alternative food for baby. Also, she is being told that her
> breastmilk alone doesn't have enough nutrition so they need to find
> alternatives.
>
> Birth Weight 10/17/12 6# 4 oz, 19"
> 12 months 3 weeks 21# 12 oz, 28 3/8"
>
> Mom is requesting information on the nutrition of exclusively feeding
> breastmilk vs exclusively feeding formula for an older child. If the only
> food is either breastmilk or formula, which is superior nutrition? She
> would like to be able to bring information to the allergist. I realize
> everyone here leans towards breastmilk. She is on her own here, questioning
> doctors and her friends and family lean towards following the doctors
> recommendations.
>
> I'm hoping someone with experience with Breastfeeding Medicine can help
> out. We need information for the allergist as the newest allergist is quite
> aggressive about introducing new foods. They have an appointment for a food
> challenge with dairy on the 22nd.
>
> Thank you,
> 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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