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, April 11, 2011
Was that mud?
Yesterday, the weather was so beautiful (hot even!), but Little Man hasn't been feeling well so we were hanging out together- inside, outside, back inside....not far from my side. His brothers were running, racing, playing tag, playing "army guys", playing football...run, run, run. They came in to have a snack and Little Man was with me downstairs. I ok'd them to have some Oreo's for a treat. I could hear the giggles from downstairs. Little man had no interest in going upstairs, so we stayed put. Later, I went upstairs to make him a bottle- with him of course a few steps behind me....whining as he had been doing most of the day (he just hasn't been "right" since the ProBioGold symptoms. I called the company and the inactive ingredients are the same as the probiotic (CD-biotic from the same company) that he is on. So, have to assume it one of the strains that his body was not agreeing with.
He stopped whining, I look back- he was picking something off the floor. Something I passed right by- thinking it was mud from the boys shoes - tracked from outside on their snack break....I wasn't even thinking it might be Oreo....until it was on his tongue....
I swiped it from his tongue and thought- maybe it's just mud? I got most of it, right? What if it wasn't mud?
I smelled it, it didn't have a smell- does that mean it's mud? Arg....just lick it. I licked it. Oreo, not mud....
He screamed for the next 2hrs....nothing was working- his brothers tried soothing him, they recognized the scream.....
Finally, after about 2hrs., he accepted some distraction from their playing and calmed down. I waited to see if today's diaper would give us confirmation of his reaction (from an Oreo cookie crumb sitting on his tongue!). There was no diaper. That has happened before, that the reaction induces a bit of constipation- I suspect it is from the dehydration shift happening in his body.
He is doing ok today, no major symptoms- just still re-cooping from whatever the ProBioGold did to his body. I have ordered some stool studies to test for his microflora and yeast. I hope this will provide us a few additional clues while moving forward.