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, November 11, 2010
I have theories as to why Little Man's FPIES has become so complex....most of them stem around the fact that we simply do not know anything about it for so many months....no clue why he was losing weight, why the formula's weren't working and the solids were a mess, why my elimination diet wasn't helping enough, why he had colic at 3mo. old and why he developed reflux after we started solids. He was a mystery to his doctors as well, no awareness of FPIES in the hospital where we have his care. We hope we are changing that, but in the meantime...we need them to catch up - quickly. We are very hopeful, and remain optimistic (who would guess I am actually a very optimistic person), that we have finally put together a team of medical professionals (Allergist, GI, Pediatrician, and Dietitian) that can recognize his FPIES, learn about it, and help us put the pieces together....one by one....
Right now, the puzzle is dumped out all over, and may even have pieces from someplace else mixed in....we need to learn if those pieces belong to this puzzle. We are back in the hospital hoping to sort through that a little more.
Little man's biggest triggers are dairy and corn....we know what corn has done to him, we are not sure what dairy would do and have zero interest in finding out because of how poorly he did on broken down dairy proteins and dairy in my diet. As I've mentioned before, corn is in everything -- so it is a tricky trigger to move away from. Most especially when it is a high sensitivity and oils and syrups also trigger the allergic response. We were hopeful that an elemental diet would get us to a baseline but after 5mo. on it and no baseline to be found; we knew we had to trial corn to see if this was the culprit....that piece to the puzzle was found and it is a big one. If getting his diagnosis was the "corners" to the puzzle, then narrowing down the corn trigger, we finally had all the "edges" to our puzzle....but now we are still left with the "middle" - the rest of the puzzle.
Right now the pieces that we are working on, and can't seem to find the way they fit - is the drop in hemoglobin causing severe anemia, the random bloody stools, the pain in his stomach, and his soy (is it or is it not a trigger for him?).
Moving away from corn in all forms meant stopping the elemental formula he was on, that he had been on for 5mo exclusively that continued to damage his GI tract. The plan was to put him on hemp milk to stop this inflammation and begin to heal his, now ravaged, gut. We knew the hemp milk would need fortifiers and a tiny menu to round out all the micronutrients a toddler needs for good brain growth and physical development. We were stuck in the puzzle for so many months trying to find his diagnosis, then we got stuck trying to find his baseline, and now we are stuck trying to find him adequate nutrition in this corn based society where corn is in everything (no offense to corn farmers intended here).
He has been so chronically ill from this affecting his gut for so long that he now continues to suffer the after effects of that. We keep searching for that right puzzle piece.....will we find it now?