I know a few babies with fpies and I follow a FB group of parents of FPIES
children in Italy.
It is a very scaring condition.
I know of a few children who survived on breastmilk alone longer than it
usually happens. It can be done, even though it could be very scaring for
the mother, who feels very much pressed and responsible - "if anything
happens...."
There is a FB group in English about FPIES, where you can probably find
information, usually parents are very aware and very educated about this
rare disease
https://www.facebook.com/groups/231244343581206/?fref=ts
I am new to this world and don't have much advise for you, but I have
noticed that even the simple breastfeeding support about how to increase
production, how to pump, how to manage breastfeeding, could mean a lot to
these mothers. So even just being there, to give information that may seem
trivial to you, could be precious to the mother.
Encourage her to join some specific support group, it could be very
important to her and her baby.
Encourage the family to find specialists and specialized research centers -
it is a rare disease, not many physicians have real experience about it.
Be there for her, you are doing a great and important job!
My thoughts to this family.
Micaela
Italy
On Tue, Jul 1, 2014 at 9:11 PM, Hendrix, Pamela <[log in to unmask]> wrote:
> I had a mother call today regarding issues with food introduction and
> SEVERE reactions that require hospitalization. The baby is 15 mo, so far is
> only tolerating breast milk. I probably need a more thorough history but
> here is what I have and if any of you have advice please also email me
> privately:
> Baby had first introduction of foods at 6 mo. Dr old her try gerber
> bananas. (I know...Yuck) 2 hours after a little spoonful baby began
> violenting vomiting until bile, became dehydrated. 1 mo later Dr asked her
> to try again. She bought organic peaches. Same scenario, 2 hrs later, Ped
> called, they send baby to the hospital. Xray ultrasound all ok. No hives.
>
> Food allergy testing NON IG, no allergies. Baby is brought to the
> hospital each time food is now attempted and 2 hours later ends up admitted
> due to turning gray and becoming lethargic. She has oral aversion and they
> try to feed her a "serving" which mom doesn't understand as a spoonful does
> this same reaction. Then did a food patch test and when the food touches
> the skin it blisters severely so you can imagine what is happening
> internally. They have been through fruits and grains and will start root
> veggies next. She has been to Joe DiMaggio in Hollywood, Jackson in Miami
> and Mt Sinai in NY. Her supply is dwindling so she wants help with
> building up her supply. I am so hesitant to tell her to take anything as
> it could affect the baby. I do have her pumping after feedings. Baby
> stays on for like 5 min at this age.
>
> Baby has oral aversion to cups of any kind, anything other than the breast.
>
> Mom eats chicken, green beans, salads, caroots, egg whites and an
> occasional pizza with cheese, so far baby isn't reacting to these things.
> (I didn't ask her what kind of grain the pizza was made from)
>
> They are saying this is FPies they think but the most severe case any of
> them have ever seen.
>
> Anyone have any words of wisdom for this mother?
>
> Pam
> [log in to unmask]<mailto:[log in to unmask]>
> [log in to unmask]<mailto:[log in to unmask]>
>
>
>
> Pamela A. Hendrix BA RNIII IBCLC RLC
> Memorial Hospital West Family Birthplace
> 954-844-9908 Breastfeeding Line
> Portable in house: 443337
>
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