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."
Tuesday, January 25, 2011
Too many questions remained- was this all 'leftover' from the fail? Was he still inflamed? Was he going downhill again? Was it from the foods we previously thought as safe (millet, peaches?). We did wait until after the vitamin to reintroduce millet, and these symptoms took a couple of days to build. I changed the recipe, saw less symptoms so was hopeful it was just too much for his system. Then stopped millet to see if that could get us back to a baseline. Unfortunately, a orange pulp (yes, just a pulp-not segment or a slice, a pulp) brought on the symptoms in full force! Stopped everything for a few days, work our way back to some sort of a baseline and then re-trialed millet this weekend with a return of some/most of the symptoms.
We can now assume it was all related to the acute reaction following the vitamin fail. The biopsy results came back today and he is clear of any inflammation!! So, this tells us: 1). that he is healed from the vitamin fail (3weeks); 2). That everything in his diet is safe (non-FPIES trigger)- his formula, his peaches and millet (although millet remains a mystery); 3). That we may need to do a "bland" diet after fails; and 4). That he is ready for the next trial.
These are good results, one more step conquered. He may need future scopes like this- to prevent him from spiraling again, as we continue to learn what intolerance's look like vs. FPIES trigger foods all compared to his baseline.