After the Oats

Last Thursday, Zac had an FPIES reaction to oats.

We were understandably sad and upset. More than that, though, this was the most severe acute reaction he’s had since his hospitalization at 7 weeks old; we were quite edgy about how his little body would cope with such profuse vomiting.

The last thing we want is another trip to the hospital, after all.

Fortunately, he stopped vomiting Thursday night, drank plenty of water, and comfort nursed throughout the afternoon and evening. No dehydration for Zac!

That night, he slept pretty well. Still, I wasn’t relaxed yet. I knew the bad diapers were coming.

Except, they didn’t.

The next day, Zac was fine.

In fact, he was perfect.

Blow. My. Mind.

I still can’t believe he reacted so strongly to the oats on Thursday, and was the picture of perfect health on Friday.

His perfect streak continued through Saturday, and by Sunday morning at church, I had relaxed completely.

Of course, you know the punchline, right? Sunday afternoon, while happily sitting and playing with the boys, Zac suddenly went from smiling and happy to screaming in pain. He clenched his whole body up so tightly he was actually shaking from the effort.

Darrel and I began the 20 questions routine and he quickly informed us his butt hurt.

Huh.

So we asked if he had gone poo-poo. No answer, just screaming. We asked if he needed  to go poo-poo. No answer, just screaming.

I gathered him up and took him to the changing table, assuming he had gone poo-poo and it had hurt.

(In case you haven’t caught on by now, it’s about to get graphic about poop. Click away if you’re squeamish!)

When I got his diaper off, I saw what appeared to be a small turd stuck to his heinie. I tried to wipe it off and realized that no, it wasn’t a small turd. It was a BIG turd that he didn’t want to push out. That tiny little bit was all he was able to expel.

Dealing with Jed’s constipation last year, I did a lot of reading about ways to help him. I know psyllium husks work well and are fairly safe for FructMal, but Zac has never had those (or anything else recommended for constipation treatment). Thinking a warm bath might help Zac poop, I raced him to the bathtub and got him into some warm water.

A few minutes in the tub, and he wasn’t screaming any more! He was back to smiling and playing; totally happy boy.

He bent over at one point, and I saw his tush. No sign of poop at all.

He’d sucked that turd right back up into his body.

Not. Good.

He got out of the tub, and I figured we’d have a nice, big poop to clean up within an hour.

Instead, every 45-60 minutes for the rest of the day, he would suddenly stop what he was doing and begin screaming, clenching his body in pain.

Amazingly enough, he slept great Sunday night. I had the thought that maybe he was over it and his little body would poop in the morning.

Nope. On Monday, he kept up the clench and scream routine all morning long. We were running out of hot water in the bath tub; eventually I just left it filled, turned on a space heater in the room, and shut the door in an effort to make the hot bath last for multiple uses.

It wasn’t too much to expect since he was asking to go sit in warm water every half an hour or so.

We actually missed speech therapy on Monday because he was screaming and clenching so much I couldn’t get him dressed. Every time I tried to get him to relax and put on clothes, he would scream louder.

In fact, the only time he stopped screaming in that 45 minute stretch was to tell me his first ever three word sentence: “No go, Mama!”

Now, I’ve never experienced constipation, so I don’t have firsthand knowledge of the pain it causes. To my mind, though, 45 minutes of non-stop screaming, coming on the heels of almost 24 hours of frequent scream-and-clench, seemed excessive.

I called the doctor.

Fellow FPIES/rare food issue Mama’s can vouch for the fact that it can be so frustrating to talk to regular doctors about our kids. Regular pediatricians deal with normal kids. Our kids aren’t normal. It can be a huge mis-match at times.

The nurse I spoke to is a very sweet lady I’ve dealt with before, and even though she knows Zac has issues with medicines and foods, let me just recount part of the conversation we had:

Me: “…so, anyway, that’s what’s been happening. I don’t know if this is normal, or if we need to have some pictures taken for a blockage or something.”
Her: “Well, it sounds like regular constipation to me. What we recommend is to give a little miralax and see if that helps.”
Me: “Zac actually has a hard time with medicines. Do you have any other suggestions?”
Her: “Prunes.”
Me: “Um…anything else?”
Her: “Pear juice.”
Me: (sighing internally) “OK. Thanks.”
Her: “No problem! Give one of those a try and if he’s still constipated in a few days or if his condition worsens considerably, give us a call back and we’ll see him.”

I’d really rather not trial a new food or medication on him when he’s just barely over a terrible acute FPIES reaction AND in considerable pain from constipation.

Finally, though, I’d had enough. Knowing that if he kept this up we would have no choice but to give him one of the nurses suggestions, I felt a little tough love was necessary.

He kept clenching and screaming, and refused to let me hold him, pick him up, or even touch him. I KNEW he would feel better if he would just poop, and while I knew that trying to poop was hurting him, it truly was the only thing that would fix the problem.

The next time he screamed and clenched, I snatched him up, yanked off his diaper, and stuck him on the toilet.

I had to hold him in place, because he absolutely did not want to bend at the waist. He’s only in the early stages of potty training; I didn’t put him on the toilet because I’m trying to convince him to poop in the potty (honestly, at that point, he could have pooped anywhere in my house and I would have been thrilled), but because it was the only place I could think of where I could force him in to a semi-squatting position.

I hoped the squatting would help him go.

As he screamed in my ear, I cooed gently to him, rubbing his back or his belly (wherever I could reach at the time) and encouraging him to just relax and let the poop come out.

Just as I was about to give up and go plop him back in the warm bath water again, he suddenly, without warning, plopped out a gigantic, rock hard turd.

It kind of took me by surprise, actually. Sort of an uneventful ending to a slowly escalating stress situation.

He grabbed me for a hug, and within a minute was back to happy, smiling boy again.

For the next two days, Zac had a LOT of poopy diapers. He did have two days worth of backlogged poop in his tummy, after all!

And they were all perfect.

I’ve heard of constipation sometimes happening at the end of an acute FPIES reaction instead of diarrhea, but it’s never happened to us before.

I’m honestly not sure which one sucks worse.

In any event, Zac is back to normal and being his usual cheerful, exuberant self. It appears we are done with the oats reaction for good.

Now we’ll give it another week or so, and then we’ll start a new food trial.

Hopefully the next one doesn’t go the way oats did.

I’m looking very forward to the day when food trials are a part of our past. This process is straining and draining for all of us when he reacts.

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So, fellow FPIES mamas, do you have any brilliant suggestions for how to treat constipation in our little ones?