Outgrow FPIES at 3? Yeah, Right!

Sorry it’s been a week since I wrote. Believe it or not, the lost bag saga has continued through this time, and I haven’t had the time or the energy to write about it. I’ve been too frustrated and crying too much just living it; recapping it was more than I could bear.

But that’s on hold for today. Instead, I have to share a little kiddo update.

Zac had a lovely zucchini pass recently, and then the kiddos both got ear infections that put any food trials on hold. After returning from work last Monday, and giving it a couple days to make sure he was still at baseline, Darrel and I decided to go ahead with another food trial.

This time, though, we thought it would be easy. Not even a real trial.

Last September, we were on the 3 day break of an oats trial for Zac when the stomach bug from hell came to visit. It wiped out the whole family, and knocked Zac for a real loop. Poor little guy lost most of his safe foods, which then had to be re-trialed. It took us almost 3 months just to get back to where we were pre-oats trial!

So now, 7 months later, we decided to go ahead and finish up that oats trial. He’s already had the 10 day intro, and the (now very long) break, so all that’s left is the reintroduction for 5 days and call it a pass. Right?

Yesterday I made the boys a big batch of banana oatmeal cookies to take to town for our errand running. 

Both kiddos ate a good breakfast, so they weren’t hungry on the drive to town. Neither one showed any interest in food until Zac was getting out of speech therapy at 12:30 p.m.

I happily handed off the baggies of oatmeal cookies to the boys, and they enthusiastically chowed down.

We had a few errands to run, and when we had finished the errands we still had about 2 hours to kill before Jed’s martial arts class started. Since they’d been SO good that afternoon, I decided to treat them to a picnic and play time at the park.

As usual, both boys loved being at the park. Jed had some new sandbox toys to play with, and he headed right for the “beach” to play.

Usually Zac jumps right in with climbing, playing, running, and shrieks and giggles the whole time. I didn’t think much of it when it seemed like he was having a hard time deciding what he wanted to do at the park, though.

He came up to me only a few minutes after we arrived and asked for a snack, and I handed him his bag of cookies. He looked at it for a moment, then started to dig around in the bag of food I had for Jed and myself to find something different. When I told him the cookies were all I had for him to eat, he just got up and went back to the play area.

I assumed he was more interested in playing than in food.

Until about ten minutes later.

I’d noticed a…conflict…in the sandbox, so I’d moseyed over to see if it was under control or if I needed to intervene. (I don’t intervene unless violence is about to ensue. Kids need to learn to sort out their own problems whenever possible.)

I knew Zac was at the big fake train our park has, and glanced over to make sure he was still okay while keeping a closer eye on Jed.

Suddenly, I heard Zac screaming and crying.

I turned towards him, and he was running towards me with a look of total pain on his face.

That might have been more concerning, except he’s taken to putting that look on his face every time he gets the slightest bump or imaginary boo-boo lately; consequently, I didn’t race over in a panic. I just called out “Did you get a boo-boo?”

He didn’t quite make it to me before he stopped and projectile vomited all over the ground. 

He heaved three times before that vomit was finished. 

We went to the bathrooms to wash his face off, and he said he felt better. As soon as we cleared the bathroom door back to the park, he took off running and grinning for the slides.

Well.

That’s not good.

But he seemed fine.

In the last year or so, his FPIES reactions have been much more mild than they were when he was an infant. Sure, they’re no walk in the park, but we don’t typically deal with profuse vomiting to bile, lethargy, or dehydration any more. The last year or so, his worst reactions are typically one good puke and then the more chronic symptoms of bad diapers, comfort nursing, sleep disturbances and crankiness.

So I made the decision to stay at the park. The worst was over, right?

I did notice Zac still wasn’t quite as enthusiastically playing as he normally does, but figured the vomiting sort of drained him a bit.

Twenty minutes later, as I sat on the picnic blanket keeping an eye on the boys, I once again heard that scream and cry and saw Zac running towards me. 

This time I ran for him.

I got to him just as he unleashed a BIGGER, much more violent vomit.

After telling Jed to gather his sand box toys, I washed Zac’s face and we left the park.

I know he isn’t contagious, but the other moms there don’t. I didn’t want them to worry about that “crazy mom with the puking kid” that wouldn’t take him home.

Mostly, though, it was out of sympathy for Zac. The second vomit really took it out of him. When we left the bathroom, he stayed right by my side and showed no interest in anything except being with Mommy.

He needed to go home.

Thankfully, Zac didn’t vomit on the way home. He fell fast asleep. The minute I started getting him out of the car seat at home, though, he woke up crying. We barely cleared the front door before he vomited again.

He vomited twice more in the next hour, eventually vomiting clear stomach fluids.

Thankfully, he continued to drink plenty of water throughout the ordeal, and comfort nursed quite a bit last night. Dehydration never made an appearance.

And after his 4th vomit of the night, he perked up considerably. His “lethargy” was short-lived.

So now we wait for residual nasty diapers, and for an eventual baseline.

It’s clear oats are a no-go; the first vomit was almost exactly 4 hours after ingestion. Typical FPIES time-frame. 

Back when he was diagnosed, in August of 2012, the doctors all said kids with FPIES outgrow it around age 3.

Zac’s 3rd birthday is in just about a month.

I know the prevailing wisdom has changed the “outgrow at 3” prognosis to a more likely “outgrow between 3 and 6” since our diagnosis. Still, when you’re told ‘3’, it sort of sticks in your mind. Somewhere in the recesses of your mind, you’re still holding out hope for 3.

So this sucks. A lot.

It’s been a really emotionally exhausting April already. Adding our first acute FPIES reaction in such a long time just really sapped me out. 

I’m just grateful it was only 5 vomits and not hospitalization. Darrel and I agreed that, based on how much more mild his reactions have been in the last year or so, the severity of this  reaction means that had we trialed oats at an earlier age, he would likely have ended up in the hospital.

So I’m grateful. 

For the crap sandwich we’re eating. 

Sort of. 

(FPIES parents get that completely.)

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Did your kiddo have a reaction around the time the doctors told you FPIES would be gone? How did you cope?