The Road to FPIES

I can remember laying in bed with my husband, and my very pregnant belly, talking about how our lives were about to change forever. We were about 2 months away from meeting our little girl and we really had no clue what to expect. I laughed and teased him saying all we have to do is figure out how to keep her belly full and diapers changed and the rest we would learn as we go. How hard could it be? Eat, sleep, poop, cuddle, eat, sleep, poop, cuddle and repeat. Over and Over and Over. Little did I know how much I would "eat" those words cause getting her to eat was a complete nightmare from the beginning. During the entire pregnancy I was completely anti-formula. I mean, I was a full on nipple-nazi and I hadn't even breastfed yet. I was convinced that feeding your kid formula was the worst thing you could do to your kid. I thought formula feeding was lazy, dangerous and well, you can fill in the blank with whatever opinion you have ever heard about formula. I was THAT person. (For that, I am so sorry.) 

We were two weeks in and she was losing weight. A lot of weight. I was nursing around the clock, meeting with lactation consultants, you-tubing how to breastfeed, I was doing everything by the book...I was doing everything I could to get food into her little body, but it wasn't enough. Her pediatricians were beginning to get worried, but no matter how much we nursed, her body just wasn't getting what it needed. She was failure to thrive. It was horrible. Finally, her doctor told me I needed to start supplementing. I remember driving to the store in the middle of the night and standing in the formula isle bawling. My husband, mom and baby were in the car waiting for me and I was so torn. I didn't know what to do. I didn't know what kind to buy, I was just so lost on the whole subject. I never researched formula or alternatives to breastfeeding. I had no clue what to do but I knew it was give her formula, or let her starve. I about walked out of the store three different times before I finally sucked it up and faced my reality. I had to swallow my pride and buy the evil formula. The formula that I swore I would never ever give my child, ever. What I didn't know, was that evil formula would soon be a life-line. 

It took us a couple different brands before we found one that "worked" for her. The first one we tried she projectile vomited everywhere. I mean EVERYWHERE! I figured it was normal for some kids to not tolerate certain ones so we tried another, and another, and another. Finally we got her on Earth Best and she started growing and thriving again. My happy little kid was back. She was so content! I finally felt like I could breath again. I could finally enjoy her. I could finally enjoy being a mom and not stress about her food. I knew how much she was getting, the spitting up stopped and everything just calmed down. It was wonderful. 

She was on Earth's Best for about 3 months before we started introducing solids. She wanted nothing to do with them. She had absolutely zero interest and we didn't want to force it so we took a break. When we tried again at 7 months we new something was not right. She became a completely different kid. Our content happy-go-lucky child was gone. She was angry (at everything) stopped sleeping well, and was just miserable. We kept trying new foods thinking, "maybe she just didn't like it." But her symptoms just got worse with every bite we gave her. Her immune system seemed to just tank. 

The first time we gave her sweet potatoes it landed her in the ER. She ate an entire jar of earth's best sweet potatoes. It was the first time she had ever eaten solids and liked it. I was thrilled, I finally felt like we were getting the hang of it! Then the rug was ripped out from under me. About 2 hours after eating she starting projectile vomiting. I couldn't figure out what was going on, she had never been sick before. Vomit was everywhere. In her swing, on my bed, the floor, the walls. Every 5 minutes she would vomit again, over and over and over. After an hour of vomiting she was limp and turning pale and I knew something was horribly wrong. Then the vomit turned to bile and I called 911. After 2 hours of non-stop vomiting she was lethargic and dehydrated but by the time we had gotten to the hospital she was fine. She was tired, but acting like her normal self. The doctors just chalked it up to a bug of some sort and sent us home. I think they thought I was crazy but my gut was telling me there was something wrong. Something unusual happened that night and it wasn't a virus. 

A week later we decided to try food again. This time it was turkey and cranberries. Again, 2 hours after eating she started vomiting to the point of complete exhaustion. That was when I knew it was the food. We started doing research and talking to other parents who had experienced similar reactions with food.  We spoke with her pediatrician and after multiple blood-draws and an IgG test we were referred to an allergy specialist. That is when we finally got our diagnosis. Amelia was diagnosed with Food Protein Induced Enterocolitis Syndrome at 15 months. We had our diagnosis. We finally knew what was going on but we didn't have all of the answers we were hoping for. Unfortunately, there is no cure for FPIES, but I will tell you it was a HUGE relief to finally have a doctor who knew what FPIES was and how to diagnose her food allergies. We finally had someone behind us who could guide us and help us determine which foods to try and which to avoid. It was the first step to finally getting answers and we were hopeful. 

*Update: At 16 months, She has no safe foods and is still on formula but she is happy and growing! We are confident that we will soon begin to find her safe foods and hopefully, someday, she will outgrow FPIES. Till then, we are going to help spread the word. about this rare but very real disease. 

**Update: Millie is almost 20 months and is successfully on an elemental formula called Neocate. We've also found her a great probiotic and she has blueberries and carrots as "tentative" safes!!!! Meaning we are still trialing them but so far so good! This is the first time she has had zero reactions this far into a trial so we are very hopeful. 

Thank you everyone for your prayers and happy thoughts. Your support and encouragement mean the world to us and we are so thankful for all of our amazing friends and family. Thank you for loving our daughter!