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."
Monday, July 25, 2011
Decision to scope....
But the main concern is his severe and persistent anemia. Dr.J (PCRCD) has speculated that he may have a macrophage activation causing his body to chew through his iron. It sounds like a logical place to investigate but our current hematologist isn't interested. The feeling is that he simply does not get enough iron in his diet, combined with chronic inflammation and bleeding- he has iron deficiency anemia. Period. No further work up needed or necessary. This simply doesn't add up to me, and my instinct tells me there is more going on. We need a new consult, we need them to look further; so we decide to proceed with the scopes (upper endoscopy and colonscopy) to rule out the GI involvement for the low iron and persistent anemia.
Our thoughts are that we need this to help further investigate the anemia, if we find inflammation or villous atrophy than we need to evaluate that and we need to consider that is the source of his anemia. But, on the flip side, if he doesn't have any inflammation, we can be cleared to do a food trial! Eggs?? I found corn/soy feed free chickens!
Little man has gone multiple scopes and each one teaches something more about his course of illness. I agonize over putting him under yet again, for yet another scope; but his FPIES mechanisms are so atypical and we are losing direction on what to next- because of the recurring anemia. We can't keep giving him blood transfusions!
We proceeded with the scope....