FPIES – FROM BIRTH TO 2 YEARS

It’s May 10th. Want to know what I was doing 2 years ago on this day? Well, it was Mother’s Day, and I was giving birth to our third baby. I always get so nostalgic on my kids’ birthdays… remembering every moment leading up to their first breath and our first meet. The emotions, the pain, the relief, the pure joy and love. So what would be better than to sum up our first 2 years together than a post all about Micah and our FPIES journey? It’s gonna be a long one, so maybe make yourself a cup of tea and get cozy!

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5/10/15. 2:01pm. In just 5 small pushes, Micah came quickly into the world! He was perfect. 9 days early, covered in vernix, 9lbs 3oz, 22 inches long, with blonde hair and bright blue eyes. He was a pro at breastfeeding from the get-go, and he seriously nursed 24/7. He gained over a pound a week for at least 6 weeks (which is 2-3x the normal amount). He was the happiest baby. But he also had acid reflux. He would nurse around the clock to help the reflux pain, and maaaaan, this boy would spit up. I cut out most dairy from my diet, and it helped… but not enough. So at 6 weeks, he was put on an acid reflux medicine. For the most part, it lessened his spit up and pain. But I noticed my diet would affect how bad his reflux was. I cut out dairy, tomatoes, chocolate, and caffeine. It helped a bit.

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At 4 months, he was over 20lbs. He was huuuuuge. The doctor said we could start solids at any time because “he may need something more to hold him over.” I figured that he got that size on just my milk, he could continue on it until 6 months like we did for Kayleigh and Seth. So at 6 months old, we started sweet potatoes. He wasn’t too sure of it.

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The first 3 days of sweet potatoes went okay. He tolerated it through grimaced faces, although he wasn’t happily inhaling it like his big brother and sister did. We figured it was fine, and we moved on to broccoli and then banana. Then November 24th 2015 at around 5:30pm, almost 2 weeks from his first taste of sweet potatoes, we gave it to him again. He barely took a few teaspoons of it. He’d push it away, he’d spit it out, and he flat out refused it. We called it quits that night, I nursed him, and he fell asleep in my arms on the couch.

7:45pm rolled around. A moment I can’t forget as much as I try to. Jason was downstairs cleaning the playroom with Kayleigh and Seth before getting them ready for bed. I was watching Netflix. From a dead sleep, Micah projectile vomited everywhere. He was soaked. I was soaked. I called Jason upstairs asking for receiving blankets, and then it happened again. And again. And again. I could feel his stomach rumble something fierce, and more vomit would come up. Of course, I was freaking out and crying. What was happening to my baby?! I had Jason get a new sleeper for Micah, I quickly changed my top, and I was packing the diaper bag for the hospital. I’ve experienced the Norwalk virus with Kayleigh and Seth. I know vomit. But this blew the Norwalk virus completely out of the water. It just wasn’t stopping. By 8:15pm, Micah had vomited 10-15x… but now it was more dry heaving and stomach bile. I tried to time it perfectly, so Micah would vomit, and then I ran out the door… knowing I would have a few minutes before he started gagging and heaving again. I drove as fast as I could to the hospital, and it took only 7 minutes to get there. I ran through the ER doors, and they checked him over. His blood pressure was low, he was pale, and he was getting lethargic. He was dry heaving bile and now blood tinged mucus, but then he would sleep/pass out between vomiting episodes.

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Eventually, a doctor saw us. He gave Micah ondansetron to stop the vomiting, and he monitored Micah for another 2 hours. I was able to nurse him to get his fluids back up, and thankfully, we got to avoid an IV… mainly because he was so dehydrated during his reaction that they wouldn’t have been able to get one in anyways. After monitoring, the doctor came back. He gave us more ondansetron in case it happened again and said it was a stomach bug. I took his word on it since I had no reason not to.

Fast forward to December 6th 2015. We went to Jason’s parents for supper that night. Micah had a bite of sweet potatoes again at 6pm. We came home, and at 8pm, as we were getting the kids ready for bed, Micah began vomiting again. This time, it was Jason holding him. He yelled for me to come, and I saw the fear in his eyes. It was happening again. And again. And again. I grabbed the ondansetron, gave it to Micah, and the vomiting stopped. I immediately said to Jason, “It’s sweet potatoes.” And I think he thought I was little crazy… but he trusted me. I continued to hold Micah that night, and I researched. I needed to find an answer. It’s just what I do. There’s something wrong? I need to figure out how to fix it. And so I did. I sat on the couch, nursed Micah, and I researched.

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I looked up “vomiting 2 hours after sweet potatoes” and after a lot of scrolling, I came across FPIES. I asked in my mommy groups about it, I found an FPIES support group on Facebook, and I researched everything I could about it. I barely slept for that first week. Every free moment was spent looking deeper and deeper into this rare diagnosis. After that second reaction, I stopped feeding Micah solids. I wanted to know more about FPIES before continuing forward blindly. I made doctors appointments, brought Micah for xrays and bloodwork, and the family doctors had no answer. When I brought up FPIES, one doctor told me she had never heard of it. Another doctor actually rolled his eyes at me and said “Well, I’ve never heard of that one. Feed him lentils. Haven’t heard of an allergy to that.” But I didn’t feed Micah anything aside from my breast milk. It was one thing I knew he wouldn’t react to… or at least, that’s what I thought.

You see, after Micah’s vomiting response, he began having blood and mucus in his stool. His acid reflux was going crazy again. He would have terrible blistering “allergy ring” diaper rashes. It didn’t take long for me to realize that he was reacting to foods in my diet. I began food journaling, taking pictures of his poopy diapers for comparison, eliminating foods, etc. Eventually, the family doctor realized that I wasn’t mindlessly going to feed Micah foods without more research, so she referred us to a pediatric dietician and a pediatrician. At our first pediatrician appointment on February 17th 2016, Micah was diagnosed with FPIES.

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Cue more bloodwork, more tests, and more research. At this point, I started looking into MCAS (more on that another day). Once I eliminated high histamine foods from my diet, the change was huge! No more reflux! His flushed red cheeks and sweating basically stopped aside from when he’d run around or overheat. But the list of foods I had to eliminate was painfully long (more on that another day too!). Anyways, I decided to give Micah “gut rest” until the blood and mucus in his stool went away. Gut rest is essentially only giving your child a safe formula or breast milk… things you know won’t cause a reaction and can help to bring their gut back to a happy place and give it a rest. Everything I researched told me gut rest was best… that if we continued to give him foods while he had the mucus, then he would continue to react. Mucus generally indicates inflammation, and an inflamed gut isn’t a happy one. Our pediatrician wasn’t entirely on board with my plan to strictly breastfeed, but I had that mommy instinct or voice telling me to stick with it. I spoon-fed him my frozen milk to get him used to moving food around in his mouth… that way he could “eat” and wouldn’t react. And I’m so glad I did it that way. We did that from 6.5 months until 11 months old.

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At 11 months old, Micah was having normal diapers! Gut rest was doing what it was supposed to, and we cautiously started Micah on grass-fed beef broth. Meat broths (not bone broths… they’re a little too much to start with) help to heal the gut because of all the good gelatin that comes from it, so I figured it would be the best start on our food journey. At his first birthday, grass-fed beef broth was his only safe food. He had a wooden birthday cake that year, and he was as happy as could be!

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Food trials were progressing so perfectly. Micah didn’t have food aversions to different textures… something the doctor tried to say to scare me into feeding him earlier (which I was opposed to doing). By 18 months old, he had 14 safes… and at 20 months, he had 20 safes. We were moving so quickly through our trials that it felt like a dream! It honestly still does most days.

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And now? Well today, Micah is 2. He has 27 safe foods, and we just celebrated his party with only those foods. It was perfect. He’s still the happiest kid I’ve ever met, and he’s developing quite the personality. Kayleigh and Seth absolutely adore him, and he’s completely in love with them too. Micah gives the best hugs, has the cutest dance moves, and he’s so incredibly strong. He is brave when he doesn’t even know what that means… he’s taught us to be braver. These 2 years have been the hardest and longest I’ve ever had to experience. But we got through it… and I wouldn’t change a thing. This face is so worth it.

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2 thoughts on “FPIES – FROM BIRTH TO 2 YEARS

  1. T. Watson

    Gah…. I just busted into tears!! Only those experiencing FPIES firsthand know the struggles, the loneliness, and the efforts it takes! I’m so thankful to have connected with you and am hapoy to follow on your blogging journey! ❤

    Like

    1. It’s definitely an isolating disorder. I’m so glad I can call you a friend now! Who would have thought two random people from BC who have never met would be able to understand each other in ways most can’t even fathom? Thanks for being there! I so appreciate our friendship!!!

      Like

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