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, May 10, 2011
Reaction, or was it?
A quick recap: Little man had had a reaction to a new probiotic strain, which brought on some cold/viral symptoms, which brought on a fever, which confirmed an ear infection, that brought us to an antibiotic, followed by stool study results that show no growth of lactobaccilli and confirmed dysbiosis of good/bad gut flora; then a revisit to the Pediatrician confirmed a healed ear infection, followed by increasing tolerated probiotic (CD biotic from Kirkmans) to every bottle which results in a return to baseline and a little boy with no crampy abdominal pain that has become signature to his vicious cycle. An unplanned banana trial brought on ZERO symptoms from some tiny bites (typically re-exposure of a trigger food would bring on stronger symptoms with each subsequent ingestion following a break).
We went away for the weekend. We haven't gone far,or done much since Little Man was 6mo.old, outside of the trip to PA for his diagnosis at 11mo., and the recent trip to NJ to the PCRCD and a consult with a specialist in protein intolerance's. But this was a wedding reception, my brother and his new wife. This was important and worth the travel. We geared up for it, and things were going well. We were feeling good about getting to travel as a family again, about being ahead of this FPIES beast. I brought millet puffs, frozen peach slices, and a banana (since the previous day had brought on zero symptoms and I was curious to know how continuing it would go....and sticking to the same brand is a good idea- especially for a corn allergy because fruits always have a risk of having a spray on them that is corn-based. Dirty fruit, fresh from the grove or fields, or the Farmer's markets, will be our best bet, least gamble. Sometimes the wash can be washed off, sometimes it soaks in, it is just better to not risk it. Sometimes organic are spared this wash, but not always. These banana's were from the organic food store and he didn't have symptoms from eating it the day before, so I was hopeful.
The wedding reception was 5hrs.away and we were staying in a hotel. We went out to eat for breakfast and Little Man asked for his banana we had brought in a little tote for him. He enjoyed eating the fresh banana while we had our breakfast. He was so happy to be eating with us, so happy to be included, and I was so happy to be watching him enjoying food. We enjoyed the rest of the morning as a family, and then even had naptime for little boys. We had a late lunch, after naptime and little man had his peach slices I brought with. Peaches that I had frozen last fall, our supply is running low we knew it would be more difficult to distract him eating away from home, so I wanted him to have something for him, at the table. We don't have a huge supply of peaches, and he doesn't like to eat them everyday anyway. Again, he was so happy to be included - gobbling up his peach slices while we ate our lunch.....maybe even eating too many?
We finished lunch and about an hour later, he started to get fussy, wanting to be held, stomach ache (kicking legs, "climbing" on us, wanting to eat, not wanting to eat, not happy). We attribute it to eating too much peaches and having some trapped gas. We try to relax him (hot shower), try to burp him, try to help him in some way. The shower calms him down, and he seems to just want to go to sleep. He falls asleep on the way to the reception,and many times through the evening. He spent the evening in our arms (mostly daddy's)- he wasn't incredibly fussy, just very tired, pale and clammy. He started to get fussy later in the evening and we decided it was time to get back to the hotel room before he put on his own show. We got back to the hotel just in time for him to have 2 small spit-up type vomits, and then collapsed into a sleep. We knew then we were seeing stages of some sort of a reaction, but from what? And how much worse would it get? Or was it just from eating too much fruit combined with the stress of the trip? Was he having a stomach ache from constipation? Was the formula too much "kefir like" with the fermenting probiotic and upsetting his stomach? Was he having a reaction to the banana? Was it from the peaches (corn spray contamination)? Was it from cross contamination from the restaurant table (didn't wipe it off before he started eating)? We are puzzled, and starting to worry.
The next day, we drive back home and Little Man sleeps almost the whole way- running low grade fevers, looking pale....We get home and he had some explosive diapers. It was like a switch, a veil lifted and he felt better....not 100% but better- laughing and playing in the bathtub.
The next day, he was still not himself, and the diapers were confirming the reaction - and we're still guessing what to? We work on getting settled from the weekend and gearing up for his IV iron again. It will be the 2nd dose of IV iron sucrose. We are not 100% sure how he did on it the first time because he was already not feeling well, not eating well, and running fevers that day. We are beginning to think his recent fatigue must be related to his anemia and actually are looking forward to getting his next dose of IV iron, with a hemoglobin lab check to see where we are at.