Turns Out, We Have NOT Outgrown FPIES

Sigh. Last week was a challenging one for us. We had LOTS of food reactions.

LOTS OF THEM.

I was starting to suspect crazy things, like full moons, or I was on a hidden TV show being “Punked”, or that mercury was in retrograde (isn’t that supposed to mess things up? I don’t really get astrology…)

In the end, though, the truth is far simpler: we had a run of bad luck, inattention, and risked some foods that we weren’t sure about that did cause reactions.

One thing became perfectly clear by the end of the week: Zac still has FPIES. No doubt.

Tomorrow I’ll share about Jed’s wonky week, but for today, I’ll stick with Zac’s story.

Remember the delicious treats I made for Jed for Halloween: raspberry fruit jellies, chocolate covered pecans, and allergy-friendly cupcakes? He loved them! (He reacted like crazy to them, but that’s for tomorrow.)

There’s only one problem with that. Jed is the Big Brother. If HE does it, ZAC wants to do it.

So when Jed went ga-ga crazy over those delicious cupcakes, well, Zac decided HE wanted to eat them, too.

I was at work when all these reactions started, which sucks on so many levels. For starters, I hate being away from my kids when they’re reacting. Secondly, I dislike knowing my parents are having to cope with reactions on their own.

Mom reported that on Sunday, Zac ate a hefty bite of one of Jed’s cupcakes.

Those cupcakes are completely safe for Jed (they didn’t even have cocoa in them this time!), but they’re straight up awful for Zac.

The dextrose is corn-derived. The food coloring I used is made of vegetables we haven’t trialed on him yet. The flours in the cupcake (other than quinoa flour) are not trialed yet. There’s white vinegar in them, which is corn-derived.

And sure enough, Sunday night Zac woke up crying, not wanting anything but Grandma to hold him. His poops weren’t that bad the next day, but they weren’t perfectly normal, either.

Monday he seemed okay to my parents, and they didn’t see him snatch any food, but he had a weird appetite. Tuesday I got home from work, and Mom suspects he snatched one of Jed’s blue corn chips…but she isn’t positive.

All she knows is that on Tuesday, Zac hovered over Jed’s food constantly. Based on what Jed ate that day, he could have snatched a piece of an orange, some chocolate covered pecans, corn chips, or sausages. (Yes, Jed’s appetite gets wonky, too, when he’s reacting. Which he was.)

First thing the next morning I changed a poopy diaper on Zac. That was concerning in and of itself; at baseline, he only poops once a day, usually in afternoon or evening.

Lo and behold, that diaper had bright red visible blood all through it.

Bad words bad words very very bad words.

It was soft, mushy, mucousy, and had that horrible “buttery popcorn” smell FPIES reaction diapers always have.

Talk about a blast from the past – I haven’t smelled that particular odor in a while!

That was a sad moment for me.

My “still hanging on my a thread” hope that Zac had outgrown FPIES was completely dashed.

What caused the reaction? Well, as I said, we don’t really know.

My suspicion is that the cupcake caused a very mild reaction; a VERY mild reaction. Then the snuck corn chip on Tuesday took the mild inflammation he had and sent it into overdrive.

Oh, and Jed, in all his 4-year-old-ness, left his bag of corn chips IN THE LIVING ROOM on Wednesday and I caught Zac literally hiding in the corner chowing down on those bad boys.

So we had a really not fun week.

I’m grateful that there was no profuse vomiting, as he used to do at the mere hint of corn. I’m grateful it was only one bloody diaper instead of several days worth.

That does indicate at least a growing tolerance of his triggers, if nothing else.

But I’m sad that my little boy had “buttery popcorn” smelling, mushy, mucousy poops all week.

I’m sad that the child who had been refusing naps for months and wouldn’t take one without a fight suddenly ASKED for naps for four days in a row.

I’m sad that my “much more communicative than an infant” son now sadly answers in the affirmative when I ask him if his tummy hurts.

I’m sad that he hasn’t had much of an appetite, instead choosing to comfort nurse up to 6 and 7 hours per day.

Add Zac’s reactions and Jed’s reactions together, and I’m sad that I’m so tired, anxious, and worn out right now, too.

On a positive note, I left for work bright and early yesterday morning. Saturday night, Zac slept for 6 hours straight!

He often does that when I’m not at home, apparently, but when he knows there are boobies in the house he typically sleeps no longer than 4 or 5 hours. That’s a good sign!

And he seemed to have a better appetite on Saturday, so with any luck, he’s slowly bouncing back.

Now I’m praying he manages to NOT eat anything bad for him while I’m away, so he heals and we can finally, FINALLY, start the sweet potato re-trial.

For the record, we were completely taken by surprise by all the food sneaks this week.

Jed has always been very good about not leaving his food out where his brother could get it. (Previous food snatches were due to stray crumbs and such. Not hiding in the corner with a whole bag of chips!)

And Zac has always been very good about not eating food that he knows is not his. Those stray crumbs were expected (which is why I sweep several times a day), but he’s gotten more brazen at snatching others foods lately.

I don’t know how we’re going to handle this new lax behavior on Jed’s part and sneaky behavior on Zac’s part. This is new for us.

And it has to stop immediately.

We need to be able to trial foods and we can’t if he’s off sneaking corn chips every chance he gets.

Unfortunately, we can’t take away all of Zac’s trigger foods from Jed’s diet. That not only wouldn’t be fair, but it would dangerously limit what Jed can eat.

Sigh. We’ll figure it out, somehow.

I’m just glad last week is over, and hopeful that this week is better.

How was your week? Did you have a great Halloween?