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 10, 2012
Pressing through trials, more pineapple and on to potato...
The first day went ok, he had them twice even- asked for them at bedtime! I started to see some subtle symptoms and the all-too-familiar- 4am crying in his sleep; but I was hopeful it was just a coincidence (when will I learn coincidences are rare in FPIES).
The 2nd day he had his chips twice again, and he was GREAT all day. That night I also got him to take a few nibbles of a baked potato. We were feeling optimistic that the random coincidental looking symptoms were just that- coincidence, and feeling empowered about finding him a fun food!
The 3rdday he had them once around lunchtime, and I was baking him some fries for dinner and had gone downstairs because he was starting to throw some tantrums and was quickly declining...and then he vomited. Ugh. No more potato. Darn it. It was one large vomit and he seemed to be doing ok. He had a poor color (is he grey?) look to him a bit later but he took a bottle and his color came back, before falling asleep (early) for the night.
My mind did not shut off all night, was this dissacharide or FPIES? If it was dissacharide, he could have small amounts- such as in baking powder that is made with potato starch and not cornstarch; and we can retrial it again sooner and simply find his threshold that his body can digest at one time. If it is FPIES, anything related to potato needs to stay out. Then thoughts go to: is it FPIES to potatoes or was it sunflower oil or contamination of the chips themselves? Corn-tamination? Or is it FPIES to pineapple? We've been continuing the pineapple and he's had it off and on (juiced, 1-2tsp in 6oz.of water).
The next morning he had the all-too-familiar-smell-it-from-the-next-room blow out diaper. Sigh. Crap. Literally. FPIES for sure, not dissacharide deficiency; an e-mail to the potato company indicates it is not corn-taminated although it could still be the sunflower oil.
Recovering from this reaction has been hard on his body, even with the TPN we are noticing signs of dehydration, he is refluxing which he hasn't done in so long, and I wouldn't be surprised if his hemoglobin and iron stores fell again as he is so very tired (although has insomnia), he is chewing on things, fingers in his mouth, and very pale. He is only eating about half his formula intake during the day (again, thankful for TPN overnight!), and isn't interested in any of his safe foods.
Finally, almost a week later he is beginning to look better, act better and eat much better and I encourage him to drink his pineapple juice again. One evening last week I made him some of his Millet Merry Muffins, he hasn't had those in awhile (since zucchini fail, he associated muffins with food that hurt his tummy). He was excited about them again and actually ate a whole one! (mini muffin, in crumbs, over the course of an hour). Six hours later, vomit. alot, repeated. We get him cleaned up and settled down into bed, he is tired. The next morning, he seems fine. What was that about? Is this pineapple? Is this random? Is this his gut still inflamed from last week's reaction?
The next day, he doesn't want his muffin but he is willing to take a few sips of very watered down pineapple juice at dinner. We go to bed, and again, 6hrs later he cries in his sleep, sits up and throws up everywhere, repeated, choking, vomit. What is this? Does he have a virus? Is his stomach upset from the pineapple? Is he failing pineapple? Was the potato reaction actually an initial pineapple reaction? He's been so off all week, was he recovering from potato or chronically reacting to pineapple? We decide the game plan would be to stop pineapple for a few days, give his gut time to heal more, be sure this isn't a virus and move on in the following week. He improved dramatically over the next few days. Something is off, but what is/was it? We have to reintroduce pineapple, or should we retrial potato? As strange as it may sound, we may have to let him decide because he isn't wanting to try anything now again....he's a quick learner- which is not good for a strong oral aversion.