Zac had an FPIES reaction yesterday.
The proof came, as always, with a poopy diaper. His first diaper of the day looked great, but since we are trialing a food, I tested it for blood anyway.
It was…inconclusive. It could have been blood. It might not have been. Hmm…
Half an hour later, another poopy diaper. Once again I tested it for blood. This time, it was positive for blood. (I always want to say “negative” when I report this. Being positive is not something I want to associate with bloody diapers!)
After the diapers, I put him down for a nap. He had a really hard time sleeping comfortably. He woke up once needing to be nursed back to sleep, and he sweated profusely even though he was only wearing a diaper and had no blankets on him.
As soon as he woke from his nap, Darrel carried him to the living room, where he promptly slid off the couch, ran to the wall and stood staring at it from a few inches away for several minutes. This is very weird for him.
Suddenly, with no provocation, he turned, ran behind the couch, and began screaming.
I came in to try and calm him, and this is just four minutes of what happened next:
Now, some might look at this and think this is just a child having a temper tantrum, but that’s not what is happening here.
In this video, Zac is in pain. He can’t stop screaming. He’s flailing away from me when I try to touch him.
It took almost 20 minutes to get him calmed down, and he was prone to having episodes like this the rest of the day.
This is not normal for Zac.
Last night he slept so badly, he woke me up every hour to hour and a half all night long. I’m exhausted.
So now to discern the cause. The obvious answer is pork, right?
Well, maybe not.
An hour or so before the first poopy diaper on Monday, Zac handed me a partially eaten ladybug. (While he hiccuped in my arms.)
And then, of course, there were the large amounts of snow we foolishly allowed him to eat Sunday.
“Snow?” I can hear you thinking. “Has she lost her ever-lovin’ mind? Snow is harmless!”
Au contraire, my friends.
In my desperate attempt to find any cause of the reaction that might NOT be the pork, I asked the corn-free people whether snow could be corny.
Check out what they sent me:
Eating Snow
Is Eating Snow Safe?
Why Children Shouldn’t Eat Snow
Yeah. In short, snow FORMS by attaching to a particle in the air. Doesn’t matter of the particle is a bit of pollen or pollution. Then it attaches itself to more ‘particles’ in the air as it falls.
So if the freshly fallen snow washed the atmosphere above our heads clean of some pollen or pollutant that Zac is reactive to, well, we gleefully fed him a few bowls full of it on Sunday.
Excuse me for a moment while I share my unedited thoughts: “For Christ’s sake! SNOW? Snow could be why he’s pooping blood? How in the world am I going to keep this child healthy and thriving if something as innocent as freshly fallen snow could make him sick?!”
Let’s not forget the ladybug, either. He’s reacted to tree buds and crickets, so obviously, nature is not his friend.
Further complicating things is the fact that Darrel and I went to the movies on Friday for our anniversary.
Why does that complicate things?
Well, what do YOU snack on at the movies?
Popcorn. Right.
Since popcorn is obviously not allowed on our house, Darrel seized that moment of freedom to indulge in a bag of popcorn for himself.
We were both so giddy at the thought of a break that we didn’t think it through.
Not only were we sitting in seats that were probably covered in popcorn residue, which then transferred to our clothes, hair and hands, but Darrel ate popcorn – and I kissed him before he washed his mouth!
I may have accidentally corned myself and my son on Friday!
(I feel incredibly stupid for not thinking this through ahead of time. I’m going to simply state that the idea of two hours away from the kids being a normal person was so heady and exciting that we simply lost our minds. It’s the only explanation I can come up with for not thinking the popcorn all the way through before the fact.)
So now we pull the pork (much to Zac’s dismay),’ wait for baseline, and reintroduce the pork to see what caused the reaction this time: date night popcorn, piggy, ladybugs, or snow.
(Am I in some bizarre alternate universe here? The absurdity of our situation is not lost on me. I feel like I’m being Punked every single day.)
I feel sick, y’all. Is it too much to ask for a food trial to go smoothly?
I mean, obviously it’s too much to ask for some safe foods…could I even just get a food trial that doesn’t have to be re-trialed, and re-trialed, and re-trialed??
Today, FPIES is kicking my butt. I honestly don’t know whether I want to cry, hit something, or scream. They all seem like decent options right now.
I’ll keep you posted; in the meantime, would you mind praying for the absurd? Please pray that my son got corned because I kissed my husband after he ate popcorn, or that half of a ladybug made Zac sick, or that he reacted to freshly fallen snow, because I’d really like the pork to be safe for him. Thank you!
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What’s the most ridiculous thing your child has ever reacted to?
This had me in tears I could only watch the first minute. I feel so luck we haven’t had an FPIES reaction in 9 months. Hope he is feeling better today. It always took Ryder a day or 2 to fully recover…except of coarse for the days of bad diapers:(
Thank goodness you haven’t had a reaction in so long – that’s wonderful!
He’s already feeling much better, but still had bloody poo as of last night. We’ll see how long baseline takes to achieve. Thanks!
So crazy for some, but such normal thought process for an FPIES parent! Was just going through a similar process with my LO yesterday. Praying it is NOT the pork!
I know, this FPIES thinking is crazy, right? Thanks for the prayers!
Extra prayers for poor Zac, and for clarity (What’s THAT with FPIES?) for Mom. No child should have to suffer like this! EVER!
Thank you, Marsha!
this video made me cry. I just video taped something very very upsetting and similar the other day. I will be showing the pediatrician at our upcoming appointment. I will be praying for you and Zac.
Crystal, I’m so sorry you had to see something similar in your LO. 🙁 Thanks for the prayers, and hope your LO feels better soon, too.
Oh Carrie that’s awful for you all 🙁 Please don’t beat yourself up for being human though – NOBODY is perfect, it’s not humanly possible. You and Darren are the most conscientious parents you can possibly be, and then even more.
If you didn’t ever do anything that might possibly be risky then your life, Zac’s life, and your entire family’s lives would be unbearable … the fact that when things go wrong Zac and the rest of you suffer so much is hideous, but it doesn’t mean that you can never take risks because that would be awful too 🙁
Hang in there and I hope he feels better ASAP.
Thanks, Ricky. I agree about the risk thing, but we try to limit the risks to reasonable risks instead of “What were you thinking?” risks. In hindsight, going to a movie theater sort of falls in the “what were you thinking” category. 🙁
Oh well. Live and learn. We’ll find something else to do if we ever get another date night in the future!
Zac is already feeling a lot better, though he still had blood in his diapers last night. We’ll see how long it takes him to bounce back. Hugs!
If anyone ever tells you that looks like a temper tantrum, ask them to look for his focus of attention. Children, even at that age, who are in tantrum mode are checking their audience… to see how the parent or sibling or friend or whoever is reacting to their little demonstration. Zac can hardly even tell that you are there. He is clearly not in control of himself or his reaction.
Heart wrenching.
THANK YOU! It’s nice to have a child expert friend who can verify that I’m not just trying to explain away bad behavior in my kiddos. :-/ Hugs!
I used to react to the cold! Weakened immune system do to leaky gut. My throat would close up just walking outside. Now I know it wasn’t the cold but the environment like fresh salted corny roads and exhaust in the air! So nothing is really absurd anymore in the allergy world heck my kids and I allergic to water. Not water in general just the water that has been altered in any way or form. So like I say if man touched it and god didnt make it then we’re allergic!
LOL Amanda! I think you pretty much put the nail on the head with that comment. I never could have imagined the crazy things I’d have to deal with in the world of food allergies. Sometimes it just seems so absurd, doesn’t it?
Sorry you’ve had to deal with this yourself, but glad you’ve obviously figured out some coping strategies. Thanks for stopping by!
Oh, girl. Praying for you guys. I remember how sweet Zac was at the house that night. My daughter remembers him, too. I can’t imagine going through this the way you are, but i do remember the 3-hr+ episodes [tantrums] my daughter went through where she was completely non-responsive (that i now believe are related to gut flora issues and candida). I’m thankful we have passed this point, and that raw milk seems to be the huge help that’s all but stopped her issues! And probiotics and less gluten in her diet, of course.
Aw, thanks, Brandy! You guys were so sweet. I’m very happy to hear that your daughter is doing so much better now. It’s amazing how much diet can affect us, isn’t it?
So good to hear from you! Say hi to your pretty girl from us, okay?
Praying here too that it was one of the unintended ingestions, and not the pork. Best of luck to you all!
Thank you, Rae!
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