Another FPIES Reaction

The view from my "office" window.

The view from my “office” window.

The last half of August was a hot mess for me. I worked ten days in the month, all of which were after the 16th. That explains my absence here last week, by the way; anything beyond basic survival was WAY beyond my abilities!

To make matters worse, this last week of work was just a cluster of Murphy’s Law for us. The day I left for work, Darrel got a speeding ticket taking me to the airport, which caused me to miss my first flight. My first day at work, Darrel realized we had somehow managed to leave all my ground beef at home, which meant I wouldn’t have any protein to eat at work for the last 4 days of my trip. That involved some SERIOUS shenanigans and effort on my family’s part to reunite me with my beef!

The very next day, Tuesday of last week, Zac got a hold of Jed’s sippy cup of almond milk and drank some. Hello, FPIES reaction!

The ingredients of the almond milk; my corn-free friends confirmed for me - this is almost SOLID corn! The gums and vitamins are all corn-derived, and the wax coating on the carton is probably corn derived. I HATE CORN!!

The ingredients of the almond milk; my corn-free friends confirmed for me – this is almost SOLID corn! The gums and vitamins are all corn-derived, and the wax coating on the carton is probably corn derived. I HATE CORN!!

Wednesday he started with diarrhea; by Thursday morning it was bloody and mucousy, and his butt became a solid open wound from the acidity of the poop.

And I was flying my fanny off, an average of 7 hours of actual in the air time each day, and could not get home to my baby.

Mom and Darrel assured me that he was fine; I should keep on flying. By Thursday night, though, I was beyond worried. Mom reported that Zac had only drunk 20 ounces of formula the whole day…this from the kid that can chug 50-80 ounces a day under normal conditions!

He wasn’t vomiting, but he was having about 15-20 diarrhea poops a day. Consuming that little liquid is dangerous; dehydration is one of the main reasons FPIES kids wind up in the hospital.

Y’all, I was frantic.

Again, though, Mom assured me that she was checking for signs of dehydration and that he appeared to be fine. I decided to wait and see how Friday morning went.

Friday was my last day of work. All I had to do was go from San Antonio to Houston, then Houston to San Francisco. As of 10:30 p.m. on Friday night, my five month leave of absence began.

By the time I made it to Houston, at 4:00 p.m., Zac had only drunk 11 ounces of formula but was continuing to poop blood at a disturbing frequency.

I couldn’t take it. IF I could get home quickly, Zac would likely begin comfort nursing and would stay hydrated enough to avoid the ER. If, on the other hand, I continued with my trip I would not be able to get home until Saturday night, sometime after 5:00 p.m. In that amount of time, Zac could easily wind up dehydrated enough to be hospitalized.

So I jumped through the hoops necessary to get an Emergency Drop from my last flight leg and hopped on the last flight of the day back home.

Friday night, we pulled the Alimentum RTF, and put Zac back on a strictly breast fed diet.

Darrel and I had each privately worried that the almond milk ingestion set off an FPIES reaction, but that the Ali might not be safe for Zac, either. If it was a slow burn reaction, this acute reaction might make it worse for Zac.

We know the breast milk is safe, so until he returns to baseline, we have to remove the formula.

Sigh.

My heart is breaking over his little tushie! I swear it looks like someone turned him over and dropped acid all over his butt. Bright red welts – some of which have broken open – are covering his heinie. At this point, because of the open wounds, we’re slathering his butt in Neosporin every chance we get.

Saturday, back safely on breast milk, Zac only had 4 poopy diapers all day! However, they ALL had visible blood in them (though that could be from the open wounds) and were absolutely FULL of JUNK! I found a blade of grass, a bit of a crayon (that he had reacted to the week before), and several other unrecognizable items in there…so God only knows if he is reacting to only the almond milk or also these other things.

Poor little Zac.

I’m back to being a human pacifier; he’s taken to nursing every 30-45 minutes All. Day. Long. Saturday he nursed for – wait for it – FIVE HOURS and TWENTY MINUTES.

All that lovely weight gain we got from the Ali? Shot. He lost a full pound last week.

In case I haven’t mentioned it, FPIES sucks.

So now we wait.

We wait for him to get back to baseline. We wait for his little tushie to heal completely.

Then we give him the Alimentum RTF again and see if we actually have a safe formula for him. If we do, we move on to quinoa again. If the Ali causes a reaction, we wait again for baseline to return, and THEN re-trial quinoa.

If quinoa is safe, we will skip lamb completely; we know he reacted to at least one of them, so process of elimination makes that one easy. If quinoa is NOT safe, we wait again for baseline and re-trial lamb.

After that, we can proceed with other food trials. If he is safe with both Ali and quinoa, that puts our timeline for starting new foods at somewhere towards the end of September. If any of those foods prove unsafe, however…well, we might not be able to start NEW food trials until towards the end of October.

I’m so relieved to be home with my babies. Financially, I really don’t know how we’re going to survive, but I can be back in the thick of “FPIES Maintenance” without having my attention and time diverted.

I’m praying it is enough, and that I can keep him healthy and finding safe foods.

Please pray with me?

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9 Responses to Another FPIES Reaction

  1. Rebecca says:

    I am so sorry, Carrie! Poor Zac! I am realizing after reading all about your kids’ reactions that something we gave Sydney as a baby was some sort of non-iEg allergy for her as we had frequent bottom burns as well. I remember having “naked baby” days where any diaper on her little bottom made it worse and she just needed to air everything out. I always assumed at the time that I was some sort of bad mama who didn’t change the diaper fast enough (and with my reduced sense of smell, it was a total possibility). Acidic poop had not occurred to me as an option!

    • Carrie says:

      Syndey has lactose intolerance, right? It’s probable there was something else bothering her little tummy as a baby. Does she ever complain about her tummy hurting after eating? You might start paying attention to when and what foods she eats; hopefully she’s already outgrown whatever it was, but just in case…

  2. Ruth Pinnell says:

    We had screaming heinie syndrome with my boy too. I assumed it was b/c of a bad encounter with antibiotics and a daycare lady not be diligent, but this went on intermittently until he was out of diapers. After reading your posts about your kids reactions, I’ve had mine tested for allergies – it would actually explain a lot if he is reactive….

    Hope Zac gets feeling better soon!

    • Carrie says:

      Wow! I’ve seen diaper rashes before…these FPIES diaper rashes are a completely different ballpark! I hope your son isn’t reactive to anything, but you’re right…it would explain a lot. Thanks, Ruth!

      • Ruth Pinnell says:

        Got our results back – sensitive to gluten and casein… at least I have something I can work with. 🙁

        • Carrie says:

          Oh, no! So sorry, Ruth. It’s hard, but at least now you know and can “fix” things. Was it gluten sensitivity or actual Celiac? If you need any dairy-free tips, feel free to ask. 🙂 Hopefully getting strict about the diet will help lots of things, though, so maybe it’s good news in the end. HUGS!!

  3. Victoria says:

    Your names are going on our prayer list today! Hang in there.

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