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."
Thursday, March 3, 2011
My FPIES Toolbox...
I started my toolbox very empty, I began to fill it with: nuts and bolts (ie FPIES studies). Then came the nails that secures me in place with all the shared knowledge (ie FPIES families). Then a few hammer's of varying sizes (ie to hammer in a point)- did you know kids can react to the feed that an animal eats? And that they can react to the proteins in mothers breastmilk? Then a few other tools to fill in the gaps: Food Family Lists and Janice Vickerstaff guide to food introductions, as well as resources such as PIC and books like GAPS; all can fill in some holes here and there- used as tools to guide, taking bits and pieces of knowledge to apply to our puzzle. Some glue has come along and proven to be quite effective already- ever use gorilla glue? (ie Probiotics). Some screws were needed (diagnostic tests), not to test for FPIES but to rule out other related medical conditions (such as Eosinophilic Disorders and Celiac Disease. A good variety of screwdrivers is very helpful to tighten up the seams (ie Allergist, GI, Dietitian, Pediatrician). Every good household toolbox needs a flashlight, ours has become Dr.Jyonouchi's research and her published articles on Non-IgE food allergy are starting to shed a good light on my thought process on individualization and the Immune and Gut involvement for the FPIES puzzle. A good toolbox to keep all of this in is essential, FPIES kids don't fit in any square box but the corners of Functional Medicine makes a good bag to carry all of this in.
We need this toolbox because each of our children are different, the FPIES mechanisms may be the same base but how we carried them, their birth experience and exposures, breast fed or formula fed, first food exposures, vaccines, environmental toxins....all change the FPIES puzzle enough for each child that without a toolbox full of useful tools, we will be lost.
I continue to look for new tools daily to fill my toolbox(bag) with. The research at FPIES United Family Fund will be one my next stops!