One Year With FPIES

Hold my hand, Mama!

Hold my hand, Mama!

Like I said, this is a week of anniversaries.

One year ago today, our world changed forever. Oh, we didn’t get our diagnosis until August 1st, but on July 18th – the day after we learned Jed’s IgE to egg had gotten so much worse that we needed an Epi-pen FPIES reared it’s ugly head and sent us careening down a path of low-grade terror that has lasted 12 long months.

I’ve said before that when Zac was 3 weeks old, he had a classic FPIES reaction that we didn’t recognize, that didn’t send him completely into shock, and that we grudgingly accepted as “a stomach bug”. So really, FPIES had already reared it’s ugly head a month prior to this date. We just didn’t know it.

But on July 18th of last year, Zac reacted so strongly, so severely, and so strangely, that we wound up spending a week in the hospital.

Little did I know that that day would be such a preview of the next 12 months: strange, un-Google-able symptoms in Zac; misdiagnosis from doctors; doctors who were trying but were unknowledgeable and therefore unhelpful; steady, low-grade terror intermixed with moments of acute, sheer terror; and a feeling of being the only person in the world who is truly concerned and worried about – and fighting for – my son.

Little did I know that one year later, we would still be exclusively breastfeeding Zac. That he would have no safe foods to eat.

Little did I know that I would spend every waking moment of the next 12 months giving myself a crash course in health, food, and allergies.

Little did I know that we would not be able to enjoy his baby-hood the way we did with Jed…no leaving puffs and Cheerios out for him to practice eating with, no making homemade baby food with my food mill and freezing it, no adorable pictures with food smeared all over his face and a gigantic smile peering out from the mess.

No first birthday cake.

No letting him “help” me in the kitchen.

No letting him even WALK in the kitchen.

No dinner time sharing of feeding duty with Darrel.

No reading books to him. (I can’t risk him chewing on a board book after what happened in December.)

Still sleeping in our bed, thanks to the frequent middle of the night feedings that his body truly needs, thanks to no solid foods.

My little frog-boy.

My little frog-boy.

One year and one day ago, I thought our lives had pretty much hit rock bottom, medically speaking. The very next morning proved to me that rock bottom is a distance too far to predict – we hadn’t even gotten CLOSE to rock bottom.

What scares me the most is that even now, as rough as things are at the moment, I know that there is still further down that we may go. 

I would love to remove FPIES from our lives. Watching Zac suffer in so many ways is wretched and I hate it.

But I know I can’t get rid of FPIES just by wishing it away. Life doesn’t work that way.

Besides, I’ve always tried to look at the bright side of FPIES. I have learned so much about how to keep my family healthy, how to eat properly, our food supply, GMO’s, and other things that will certainly benefit my family for generations to come. That wouldn’t have ever happened without FPIES forcing the issue.

Still…I wish I could go back to the time before FPIES and remember what it felt like to be the mother of a ‘normal’ child. Zac wasn’t normal, but I didn’t know that. I was blissfully ignorant, and I’d like to spend an hour feeling that way again.

I’d like to remember what it felt like to have my only motherly concerns being sleep schedules, and…well, I can’t even remember what “typical” motherly concerns are enough to lament them! I suppose typical moms worry about breast versus bottle, cloth versus disposable, and other completely inconsequential things in life. I’d like to remember what that is like.

Because FPIES has made it impossible for me to fret over the little things. I spend each day in a battle to keep my son healthy and growing, and my enemy is ubiquitous and forceful. Food is my enemy, and Food has legions of foot soldiers in its war against my family.

  • That child on the playground? That’s not a PB&J, that’s an Uzi.
  • That tactile bin at therapy? Those aren’t dried beans and rice, those are Grenades.
  • Those sweet people we meet who love children? They aren’t offering candies and lollipops, they’re offering Cyanide capsules.
  • Those restaurants we used to eat at so often? They aren’t bastions of yummy, easy food. They’re traps and ambushes.
  • The art projects I hoped Jed and I would be doing with such frequency by now? They aren’t harmless developmental tools, they’re Switchblades and Machetes.

FPIES has made the world a dangerous place for my family, a place we dare not venture without body armor, weapons of our own, and an overblown sense of paranoia. 

And those of you without FPIES (or other severe allergies) may think I’m exaggerating, but I promise that the other FPIES Mama’s who read this post will know exactly what I’m talking about. They will Get It; FPIES robs you, attacks you, and threatens you hourly.

It is inescapable.

One year ago today, Zac woke up refusing to nurse, lethargic, blowing brown-tinged spit bubbles, and struggling to breathe.

Today, we are in the midst of a confusing lamb broth trial. He had a bloody diaper three nights ago, and we aren’t sure if it was from the lamb broth, the wood we found in his diapers that he’d teethed on, or the bloody, oozing diaper rash he developed over the weekend.

So we’re on pins and needles, forcing ourselves to feed him more lamb to prove the matter once and for all, knowing that we may well be feeding him food that is making him sick – and having no choice in the matter.

One year with FPIES has changed me forever. I will never look at motherhood – or life – the same as I did one year ago today.

My goal, as we face another year (or more) with FPIES, is to take the pain, the difficulties and hardships, the attacks of FPIES all upon myself, so that my children are not emotionally and psychologically damaged by this all-consuming fear of food. I want to take all of that suffering on myself so that they don’t ever have to know what it is like. 

I’ve worked hard to make treats for them, delicious, safe food for them, to make it possible for us to occasionally step outside of our home and “seem normal” at times. I will continue to do that for both my boys.

No child should have to suffer this way. None. NONE. It’s not right. 

I’ll continue to do everything in my power to protect my children from not only the food, but from the social challenges that accompany food as they get older and branch out into the world more.

One year with FPIES. Sigh. Little did I know…

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9 Responses to One Year With FPIES

  1. Lori says:

    So sorry you all have to go through all these trials with both your kids. God never gives us more than we can handle with his help.
    I had never even heard of fpies before your blog. My conclusion, Fpies SUCKS.
    But, I’m sure you already knew that. 🙂
    Special prayers for your kiddos today.

  2. sara says:

    You are AMAZING for getting all of you through a whole year of this. This is more burden than anyone should have to bear… Especially your sweet boys.

    On a side note… Have you looked into e-books? Not so great for teething babies… But at least you don’t have to worry about accidental paper ingestion…

    • Carrie says:

      Thanks, Sara!

      E-books are a great idea…except Zac always just wants to teethe on our phones! Maybe if we got indestructible cases…hmm…it’s an idea! 🙂

  3. Joy R. says:

    What a wretched disease to have to deal with! It sounds like a death of sorts…the death of the dreams of having that “normal” childhood for your children that every parent just takes for granted that they will be able to have. It’s very sad that FPIES has taken that away from you, your husband, and your kids. You are amazing though for all you’ve done. Many a strong woman might have just laid down in defeat and cried…but you saw it through and your kids are thriving because of your hard work.
    BTW…thank God for breastfeeding, huh? I can only imagine where Zac might be today if you had gone on with the elemental formulas!
    A random thought…I wonder if any mothers ever had their babies/kids die because of undiagnosed FPIES? It certainly would stump a lot of medical personnel, and if you don’t remove the cause of the reaction, I imagine it would keep getting worse and worse over time. I am glad that you figured it out, and that your kiddos are healthy and happy as a result! Scary that diseases are out there that are so deadly but so unknown too!

    • Carrie says:

      Thanks, Joy!

      You know, I have a dear friend whose doctors told her she would never be able to figure out her sons trigger foods and to just progress with the elementals, and turns out he reacted to all of them. Her ordeal and their struggles were a large part of why I persisted in the TED and breastfeeding, and I’m so glad I did! We’re facing a formula trial soon, thanks to his hefty appetite running through my stashed milk so quickly, but at least we’ve kept him healthy so far – and kept our options open. (Actually, that dear friend was NOT my dear friend when I learned her story, but I read her blog and was inspired to start this one – and then she and I connected and became friends! I’m so grateful for her!!)

      As for your random thought, it’s not so random. I’ve wondered that myself. Last summer Zac didn’t have any vomiting or diarrhea (classic acute reaction symptoms) – he just progressed straight into shock. I suspect that there are many cases of SIDS that were, in fact, FPIES kids that did the same thing and died before their parents realized anything was wrong. On top of that, there’s always the concern that a child may aspirate on their vomit in the night. Well, concern doesn’t quite cover it. More like gut-wrenching fear. So, yes, I suspect but can’t prove that FPIES can be fatal. FPIES moms don’t exaggerate when we say we live in a constant state of low-grade fear. 🙁

      • Joy R. says:

        That must be so hard for you, because not only do you have the “normal” vague fear of SIDS, you have the very real fear that, what if your child has a reaction at night?
        It’s always something, isn’t it? Even when my kids are perfectly healthy, I still have to worry about them. But it makes it that much harder for moms like you who HAVE to be hypervigilant. You just don’t get to relax.
        As for Zac, it sure is lucky that his breathing problems happened during the day. *shudder* I’d hate to think how it could have gone down otherwise. The crazy part is that parents like you get told by their doctors that “Oh they just have a virus, you will just have to wait it out” or “the flu has been going around.” If moms like you had just kept listening to the doctors, your child would wind up dead. THAT is the scary part and what makes me think there are probably undiagnosed ones that have been missed in the past.

  4. Belinda says:

    I am the mother of an 8 month old FPIES baby in Australia. This article you have written is like as if I have taken pen to paper: everyone thinks I am exaggerating, and should be thankful that her diagnosis wasn’t worse – which I am – but I am in constant agony every day.
    i wish I could take it away from her, but I can’t. The immense guilt I also feel toward my 4 year old because I’m constantly protecting my little one against anything she brings home from preschool or eats, is eating me alive.
    We have been living FPIES for 3 months – I don’t know what I’m going to be like in a years time.
    Lamb is also our enemy – she reacted 2 nights ago and we spent the night in hospital – it was only mild, thank heavens but enough to trigger profuse vomiting. How can I bring myself to give her new foods when it breaks every bit of my heart when she reacts?
    I’m following your blog intently and am so glad you had the courage to post it.

    • Carrie says:

      Oh, Belinda. I’m so sorry I haven’t responded sooner. And I’m very sorry your sweet daughter is going through this. I had such severe reactions to feeding Zac at first that I actually went to the doctor to check my heart due to the arrhythmia I was having; turns out, it was just extreme anxiety attacks. 🙁

      It gets easier. It really does. You’ll never stop feeling awful that something you fed your child made them sick, but you’ll grow to accept that you simply must push through, regardless, to keep trying for safe foods. The alternative is a child who will never be able to eat normal foods, and that’s not normal.

      Regarding your 4 year old, we had to implement strict food rules that food is only eaten in the dining room or kitchen. Just keeping food out of all other areas of the house makes it so much easy to keep the kids safe, and will eliminate guilt about denying your older child. She can still indulge, just not anywhere she wants to. LOL

      I’ll be praying for you and your family. I can already tell you’re doing a great job! HUGS!!

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