Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Friday, June 25, 2010

If a Pharmacy can compound a medication....

Then why can't a nutritional company formulate a formula? My little man needs a dairy-free, rice-free, corn-free and I highly suspect soy-free amino acid elemental formula.

His current formula is an amino acid elemental formula....unfortunatly it has a corn syrup solid base. The company has assured me the proteins are extracted; but this would be similiar to separating an egg white from an egg yolk for a person with an egg allergy... (I speak from experience, our oldest son has an egg allergy and he can not have Culvers Ice Cream - a custard made from the egg yolk)... It depends on the sensitivity and severity of the allergic person.

Well, our little man appears to have a very sensitive case of FPIES - he currently reacts to everything.

He even reacts to the sand in our sandbox, we suspect the trace proteins from the Walnut tree in our yard because the squirrels have buried walnuts everywhere in the backyard. But I digress....
Back to the formula. Abbott Nutrition makes an elemental formula (Elecare) and a corn-free formula...unfortunatly they are not in the same mix. Alimentum ready to feed is corn-free (the base for this is sucrose and tapioca starch); BUT (and this is a big but)- it is not amino acid based proteins; it is hydrolyzed (partially broken down) cows milk proteins....which little man has reacted to small doses of in the past (and through my breast milk even).

So.....the question I posed to Abbott Nutrition (makers of Elecare and Alimentum) is: can you formulate a formula to meet my son's needs? The answer: not at this time.

Back to the drawing board. I do not give up easily. Hemp milk is what Dr.P at CHOP recommended, the first ones I have found have too many additives that little man can not tolerate but I'm not giving up. It is a possibility -- with the help of our great dietitian -- we may be able to make our own "formula" won't be easy but I know it can be done! Something that our little man can truly thrive on....just imagining seeing his true baseline makes me shiver...

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