FPIES stands for Food Protein Induced Enterocolitis Syndrome and our youngest son has it. This blog follows his story on this journey: our challenges, our triumphs, our adaptations as we navigate through this new world created by FPIES.
Mothers Intuition
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, June 23, 2010
Corn is in EVERYTHING!!!
Little man threw up again last night, not terribly violently- just 2 large amounts and he was pretty much done, so could've been a couple of things: 1.large volume in short time period or 2. pedialyte.
We had a little bit of a formula supplier mix up and kinda ran a little short yesterday, not that it made too much of a difference because he hasn't been wanting much formula anyway but he went a few hours without eating, followed by a large ingestion of formula and pedialyte -- so,so hot out yesterday, and we were out in in for awhile running errands in the afternoon and at his big brothers baseball game in the evening and since I didn't have enough formula to give him, he had pedialyte to be sure he was staying hydrated.
I have been worried about the possibility of corn in pedialyte so I sent Abbott Nutrition and e-mail inquiry; I got a quick response this morning only to have my suscipions confirmed....sigh, it's all corn- the dextrose is corn derived and so is the citric acid. Sigh.
Little man drinks it well after a reaction and with repeated vomiting, emptying your stomach until bile followed by loose stools -- it is a good thing to have something to replenish those losses. So we were glad to have it in our treatment options for him, to be able to manage this at home, and help him recooperate from his reactions. Sigh.
He isn't feeling well today but is down for his 2nd nap, and we are told his corn-free compounded ibuprofen is ready at Walgreens; so hopefully he will feel better tonight/tomorrow.
Check back later because we are giving Samuel a second first birthday tonight. His brothers are so excited!! We finally got around to getting him some presents, and this time he can blow out the candle on his "cake".
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