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, November 14, 2010
More Pieces to this puzzle?
The vitamin presented as possibly safe has some concerning ingredients that I will need to check on before trialing it. I am in desperate need of assuring he is getting the nutrients he needs but also very worried about making him sick -- from a vitamin, synthetic nutrients! I would SO much rather be doing a food trial....my thoughts go to Egg. Egg has so many beneficial nutrients - maybe if he could pass egg, he can fill in the blanks to assure optimal nutrition from FOOD. I am all for whole food vs. supplements but I do realize when the need outweighs itself. So, I have some (more) researching to do this week; along with more research/reading on Protein Intolerance.
FPIES is protein intolerance, it is viewed as the severe end of the spectrum of protein intolerance. Much like anaphylaxis is the severe end of the spectrum of IgE allergy's. Not everyone with IgE allergy's reacts with anaphylaxis, in fact it is rare. Not everyone with Protein intolerance reacts with violent vomiting to bile/lethargy/diarrhea and shock- FPIES reaction. It is also rare.
Soy brought on what looks more of intolerance symptoms (disturbed sleep, runny stools, bloody stools, mucous in stools, runny nose and a barky cough). Not symptoms you would want to see at a baseline! But not FPIES trigger either? Not clear and not tolerating either way. We will need to re-trial soy again soon to know for sure.
Protein Intolerance is where I began this journey. But his symptoms didn't fit nicely in that box. Reflux was suggested, but his symptoms didn't fit there, EE was ruled out, Celiac was ruled out by biopsy. Elimination and elemental diets brought us closer but still not in a box. FPIES discovery, diagnosis and treatment brought us a baseline. And yet we still were struggling to maintain that baseline. More to come on protein intolerance vs/and FPIES as I learn more of this puzzle.
We did come home from the hospital (again) on Friday night. We felt since Little man was FAR from a baseline (bloody stools everyday last week, with this congestion/cough/fevers) we couldn't introduce something and see a clear picture of how it was affecting his body. We are so glad we came home! We have enjoyed the past few days just being a normal family.