Bad Words. Bad Words. Very Very VERY Bad Words.

Eating dinner last night. So happy to be eating. I wonder when I'll get to see him do this again.

Eating dinner last night. So happy to be eating. I wonder when I’ll get to see him do this again.

Sorry in advance, but this is going to be a long, sad post.

Back in June we started a quinoa trial. We planned to pull the quinoa for three days and resume the trial to see if he reacted, and on the final day of the first stage of the trial he came down with an ear infection that required antibiotics.

So we stopped the trial, got him the appropriate medicine, and when it was all over decided we’d be better served to heal his gut with some broth. We decided on lamb, and I made him a whole bunch of lamb broth.

We started the lamb broth trial on June 15th.

When we were ending the first stage of the trial, he got a hold of a corn kernel (or perhaps some other accidental ingestion) and we had to wait a bit before resuming the trial so he could return to baseline. (That’s the last part I’ve already written about – sorry for the recap.)

We were able to start the reintroduction of lamb broth on July 13th, and it seemed to be going well! He was showing absolutely no reaction signs!

So on July 19th I got brave/insane and gave him some lamb MEAT.

He LOVED the meat. LOVED IT!! The little stinker couldn’t get enough of it! That was also the day I flew to work, and my Mom didn’t feed him lamb meat the next day. On the 21st, Darrel had the boys and he fed Zac lamb meat several times throughout the day.

Again, Zac LOVED it and gobbled it up…he also went from drinking about 50 ounces of breast milk per day to over 80 ounces in that day, and the subsequent days until I returned home.

But we didn’t make any connection between the increase in breast milk and the lamb meat; he started teething right about that time, so we assumed it was “comfort nursing” from that.

We persisted with the lamb meat trial through the week of Nana’s funeral, and stopped giving him the meat on Friday last week (the 26th).

Over the weekend, he only received lamb broth.

Monday of this week, we reintroduced lamb meat…but after chatting with a fellow FPIES mom I had learned that the proteins in the lamb meat BROTH and the lamb MEAT were identical. So I assumed that he had already, basically, proven that lamb is safe for him!

Since we’re about to be pressured into a formula trial for him due to dwindling breast milk reserves in the freezer (we only have 2 days worth of safe food left for him), we decided to reintroduce quinoa so we could possibly have two safe foods for him before the formula trial.

So on Monday we also gave him some quinoa. He ate that lamb meat and quinoa like he was a starving man! I was so thrilled to see him eating and enjoying it!

Then that night he slept horribly. He woke up every 1.5-2 hours all night long.

Tuesday morning I fed him the leftovers from dinner and he – again – ate like a starving man. I also made him some quinoa crackers and he begged for crackers all day long!

At lunch, he didn’t want to eat his lamb. He mostly played with it. Same thing at dinner.

But he ate crackers as often as I would give them to him!

He also had a poopy diaper that day that looked like it had a bit of mucous in it. He is still teething, though, so I hoped it was just from that.

That night he refused to sleep at bedtime; he rolled around and acted really uncomfortable. Finally we managed to get him to sleep after a car ride.

Wednesday morning he still refused to eat his lamb (which, by this point, was also a refusal of the sippy cup of lamb broth we give him).

He refused lamb at both lunch and dinner, but ate as many quinoa crackers as he could get and even screamed for them! In fact, at dinner I coated his lamb meat in quinoa flour before heating it up in hopes that the combination of flavors would appeal to him. He actually sucked the flour off the lamb and spit the meat back out!

And throughout the day, he had three poopy diapers, each one worse than the one before.

It started with definite mucous. Then it was MORE, nastier mucous.

The final diaper was FULL of mucous…and visible blood.

BAD WORDS. BAD WORDS. VERY VERY VERY BAD WORDS.

And after that diaper? He refused bedtime and required another car ride to go to sleep.

I’m sitting here having a really hard time figuring out how to write this part of the story. Everything I want to say is laced heavily with sailor-esque profanities. While I’ve been known to let the occasional, fairly innocuous swear word pepper my blog entries on occasion, even *I’m* offended at what is running through my mind. THAT is how totally and completely angry, frustrated, horrified, disgusted, furious, devastated, and trapped I feel at this moment.

My hatred of FPIES is so complete, so profound…it’s downright scary. I think I hate FPIES more than I could hate anything on the planet.

So here’s where FPIES has left us: we’re being forced into a formula trial very soon because right now we only have enough stashed breast milk to last 2 days of me at work. I’m scheduled to work 10 days in August, so we will shortly have to either force him into a formula trial or have me call out sick for the rest of the month (which we cannot afford).

I am terrified of the formula trial; something in my gut says it is going to make him react. How severely, I don’t know, but I’m terrified of having to do this.

Starting September, I have a 5 month leave of absence from work. It’s financial masochism for us to do this right now, but it’s necessary for Zac’s health.

So now we have to:

  1. Pull both lamb and quinoa
  2. Let Zac return to baseline
  3. Trial a formula (that will probably make him react) and hope he makes it through the ten days I have to be at work this month
  4. Let him return to baseline if he reacts to the formula
  5. Re-trial quinoa
  6. Re-trial lamb

This current bloody diaper has put us behind on food trials by at least a month, maybe more.

At this rate, we’ll be lucky if he has one safe food before Christmas.

And how exactly am I supposed to survive with Zac and Jed all day withOUT feeding Zac his quinoa crackers? Whenever he cries for them, Jed insists on feeding him a cracker. I’m going to have TWO kiddos mad at me for denying Zac his crackers!

I hate seeing my little boy in pain. I hate seeing him squirm from diaper changes because they hurt. I hate seeing blood in his diapers.

I’m so overwhelmed with anger and frustration and devastation. I feel like a caged animal. I want to hit someone or something – but what? There is NO outlet for these emotions.

I can’t protect my son and keep him safe, and I can’t beat the crap out of the enemy that attacks my son. FPIES doesn’t have a face. (If it did, it wouldn’t have one for long once I got a hold of it.)

Sorry, y’all. I’ve said it before that with FPIES, sometimes Hope is all you have.

But I’m all “hoped out” right now.

I feel like we’re running out of options, both financially and for Zac’s health. I don’t know what to do.

I’ll probably feel better in a day or two. Until then, though, this is what’s happening in our world, and sorry for the gigantic downer of a post.

Oh, and an interesting tidbit I learned tonight from the other FPIES moms – my friend was right: the proteins in meat broth and meat are identical. But straight meat has MORE proteins, which means an FPIES child might be okay with the broth but not the meat. In the “for what it’s worth”/”for your information” category. 

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5 Responses to Bad Words. Bad Words. Very Very VERY Bad Words.

  1. Roll Tide Mom says:

    Oh God, Carrie!! I’m sooo sorry! That is one of the Worst feelings. I have to say there isn’t much that ranks up there with that feeling, and it’s a feeling that haunts you until you get some “breathing and eating room”. As an FPIES/allergy mom who has experience (funny how I can actually say that and still be scared Spitless when it happens) with more *formula trials* than I care to count, I want to offer some encouragement…it DOES get better!! Even if for a little while, *those* are the moments you have to think about right now. Those are the moments that will keep you pushing for answers and a way to get the little guy eating safe things somehow. FPIES will test your faith over and over. It’s Not fair. It ROBS you of everything good, but you can’t let it win. You have to fight back. Of course there is the obligatory expletive rant, followed by crying buckets and then just sheer panic from what’s next…but once that passes, you’ll be even more determined because you are Strong!! It took me a while to equate A being a bottomless pit on formula and food before to realize the same thing you did. I was SO happy with the fact that the little bugger was eating, I didn’t realize what was going on until the massive amounts of blood and vomiting started to appear, the behavioral changes, all of the screaming like he was mad at the world. What’s an infant have to be mad about especially when he’s such a laid back kid?!? I also want to note that even though I learned the signs, with each time he did it, I was in denial. I didn’t want to believe we were about to go through the same thing time and time again. And with a kid who received 90% or more of his nutrition from formula, what were we going to do when there was no backup? The Answer: FIGHT! You’ve already been through so much and are already a veteran, but one thing I learned is that this *effing* disorder does not care how much it puts you through, so be ready. I know you Will!! Research, Research, Research, whether drs like it or not. He’s your little boy, and you know him best! If you come across something that you think might help, don’t be afraid to take it to a dietician and ask for backup and support. Hemp anyone? Best thing I ever did, but I wrestled with it because “it just wasn’t done” and “that’s not something you offer children” lol. Having to pull all of this looks like and is a major setback, but maybe you can turn it into something good once you get him back to baseline. Definitely start checking into which proteins are in foods and their chemical makeup. That is a BIG start right there! More than anything, I wish you tons of determination, endurance, and perseverance for when you feel like things are never going to get better! We FPIES moms will fight right along side with you! If I can help in any way, don’t hesitate to shoot me an email or catch me on FB. Stay Strong and don’t let FPIES have the last word. Good Luck!

    • Carrie says:

      Wow, I’m almost crying from this! Thank you so much for your amazing pep talk! Yes, I think it’s time to take my FPIES research to the next level…have any advice on where to start looking at the proteins in foods and their chemical makeup?

      You’re awesome, Mama! Thank you so so much!

      • Roll Tide Mom says:

        After our disaster…ish allergy appointment this morning, I decided to step up the research too. We can do it together! 🙂 Actually, I should give credit to the allergist who ticked me off enough to start asking important questions and putting 2 and 2 together to equal 4. However, Do they Have to make you feel incompetent every time they “inspire” us to work harder? I think not! My suggestion would be to get in touch with a Research Dietician or someone who deals with IgG and IgA allergies (GI possibly- if they’ll talk to you). Our FPIES kiddos have actually given us a leg up on this because we already know how serious things can get even though they’re non IgE mediated responses. Plus, we’re Right On Track when it comes to treatment. Since they can’t really test to see what is “safe”, it’s Vitally important that we do food trials! IgG and IgA are delayed onset reactions and also include swelling and inflammation (thank you lymphedema response from green beas and peas). The problem drs are having with us mothers 😉 is that we take our kids in when they’re clearly very sick and go…ok, NOW TELL ME there’s nothing wrong. And…they can’t. All they can say is…it’s not my field. Gee, thanks. I think I would take his safe foods and see if you can research proteins that are close to it Even when it’s broken down. This is also why drs say kids can’t react to carbs and fats….Umm, yeah, try again. Beg to differ! FPIES and EGID clinic pushing big for research and to get drs educated will help a Ton, but someone’s going to have to actually raise their hand and say…ok, I’ll take it. That’s in my field. We all get shuffled back and forth between an allergist and a GI, but in fact…I think it should be between a rheumatologist and a GI. But what I learned today is…trust that gut…no matter what!

        • Carrie says:

          I’m so sorry you had such a crappy allergist appointment today. 🙁 I know you’ll persist and get the answers your kiddos need, though! You’re pretty awesome!

          Yeah, the gut instinct thing is so important. Too many people – especially Mama’s – ignore their instincts. One day, when I have some safe foods for Zac that I can compare proteins with, I’ll venture down that avenue. I wonder if comparing the proteins of his unsafe foods would be helpful? Hmm…now to figure out how to do that! LOL

  2. Lesley says:

    🙁 That Sucks!!! *HUGS*

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