PTP

I have a mother whose child has been diagnosed with FPIES Food
Protein-Induced Enterocolitis Syndrome. http://fpiesfoundation.org/ . Baby
is 11 months old and cannot eat solids, she is exclusively breastfed. Birth
weight was 6# 4 oz. She is currently 21# and is thriving and in the 75%.

Mother is being instructed to wean so baby can be tested on various
formulas to determine if allergic to dairy or soy. They are considering
introducing Alimentum. Mom does not want to wean and is feeling pushed into
it. She is also being told to pump and they will use her milk to mix with
formula to entice the baby to drink it. Baby currently will not take a
bottle from Mom.

She is being told her milk will not have enough vitamins and nutrients in
the long run.They are concerned with weight gain problems in the future.

Baby cannot eat oats, rice, green beans. Mom eats them and baby tolerates
them well via breast milk.

They will likely be going to allergy specialists in other states as this is
very rare and there are no local specialists. Allergist admits to not being
very familiar with the syndrome.

I am look for good, solid information for Mom. Any specialists, contacts,
support groups, resources you can suggest would be greatly appreciated.

Thank you, ladies.

Allison Laverty Montag BA, RLC, IBCLC
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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