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."
Saturday, January 15, 2011
What I have learned from FPIES....
I have learned:
1. Food journals are a must.
2. Cross contamination is a very real threat.
3. Trace proteins are enough to launch a reaction- minor or full-blown.
4. Trace proteins can be present in breastmilk, sufficient enough to cause reactions.
5. Not everyone will tolerate all elemental formula's.
6. It is possible to react to oils, syrups, and starches.
7. It is possible to be allergic to breastmilk.
8. Someone can be allergic to tapioca.
9. Rice is not a non-allergenic food.
10. It is possible to build your own formula.
11. FPIES triggers intestinal inflammation that is severe and acute; and it's effects can last anywhere from 1-4weeks to heal. Food trials should not be done during that time, a return to a safe diet is essential for intestinal healing.
12. FPIES can be chronic or acute, or both.
13. Exposures to trace proteins can exacerbate a chronic condition, exposure to whole proteins will launch an acute on chronic reaction.
14. Vomiting and diarrhea are the bodies way of ridding itself of the (perceived) toxin.
15. Shock is scary, and should never be underestimated.
16. Acidosis is scary, and is part of an FPIES reaction.
17. Corn is everywhere- be aware.
18. Advocacy is a must, teaching opportunities are everywhere.
19. Corn should be in the Top Allergen's list
20. Don't assume labels will be listed for cross contamination's.
21. FPIES can cause villous blunting/atrophy.
22. Non-food sources can trigger an FPIES response- even if not taken orally.
23. FPIES is a cross between IgE Anaphylaxis allergy and Celiac allergy. It should never be underestimated.
24. I should never be underestimated.
25. I have so much more to learn.