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."
Wednesday, July 14, 2010
He isn't throwing up, so for that I am extremely grateful. It also is a good indication that what he is enduring isn't FPIES reactions.
His diapers are another story. Since corn fail, we continued to give him Neocate- with trace corn proteins. His body was reacting to the trace corn proteins already and after we pushed the limits with a true food trial of whole corn; his body now recognizes corn as an offender- and launches the attack at even trace recognition of the proteins. We continued to give him Neocate following corn fail because he was just too sick to test out a new "formula" or milk. The mucous in his stools was daily, the throwing up kept up sporadically (despite no crumb ingestions or other food exposures). We were moving him slowly to only Hemp milk...until the mucous in his stool turned to blood. We stopped Neocate right away and went straight to Hemp milk and building a formula out of that.
His bloody stools were accompanied by unexplained low-grade fevers and lots of fussiness but we didn't see any more blood....until yesterday. Blood throughout his diaper, in streaks and clots, and the pain cries have been intense, until the diaper today with a very large blood clot- he's been feeling better since then so hopeful this was the "end"....and maybe just his body cleaning out.
I can hope, I am optimistic. We were getting to see such good progress before last week, if only we could get back there and stay there for awhile.