FPIES stands for Food Protein Induced Enterocolitis Syndrome and our youngest son has it. This blog follows his story on this journey: our challenges, our triumphs, our adaptations as we navigate through this new world created by FPIES.
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."
Sunday, February 27, 2011
If he doesn't eat formula, what does he eat?
I began the process of making my own formula for him when I discovered he was sensitive enough to react to the elemental formula's, that by giving up nursing to put him on an elemental formula- I had made him more sick.....an FPIES moms worst nightmare. It is rare, but it can - and does- happen. Little man is not the only one, and with the growing number of people discovering that corn is at the root of their illness, it is my hope that one day there will be a corn-free elemental formula. But as of today, there is not. So, I must make one...it was the only way to take away his daily pain, his random vomiting sessions, his terrible diapers, his colic and gas-disturbed sleep. And not only that but to add in increased intakes, and healing. Hemp milk has provided this for my Little Man.
It has taken months of tweaking, and while the formula is now at ~22cal/oz; and meets all his macro nutrient needs (macro nutrients are the bulk of our diet- calories in the form of carbohydrates, proteins and fats); it is still lacking in some micro nutrients- mainly B vitamins since Hemp is a plant protein, but also a few others (micro nutrients are vitamins and minerals). When starting the formula, our goals were to just make sure it was adequate in macro nutrients and that it is.
The ingredients of this formula to meet those macro nutrients needs?
1. Hemp milk is the base with Hemp high protein powder for added protein. Hemp is a super food. For an article on the benefits of hemp: Hemp Seed.
2. Safflower oil provides a low-allergenic fat source.
3. Arrowroot is a well-tolerated starch. Although well tolerated, little man does not tolerate it in the starch form, I have to make it into a syrup.
His formula is adequate but not optimial. Micronutrients would make it optimal. Where do we get the micronutrients from? His diet....but we have been unable to give him the tiny menu to do this.
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