Our FPIES story...

My Tiny. 

Our Little Ainsley has always been healthy, strong, and tiny. She has always been under 3 percentile however, it has never been a real concern as she is hitting all her other milestones. At our 6 month check up Ainsley had dropped slightly off her own tiny growth curve. So the doc told me it was time to start solids and she would expect her to jump right back up where she needed to be. Up until this point she had been exclusively breastfed. I entered into the world of solids with hesitation. I just always had a feeling this was something to be cautious of. However, I chalked it up to just not wanting to let my baby "grow up" and started of course with the recommended infant rice cereal. 

What is Normal? 

She seemed to be interested and actually kind of like it. I was excited okay, maybe this wont be so bad. It might be fun especially being able to let daddy participate in feeding more. However about two hours later after we played, and nursed. She vomited. Not like baby spit up but a real throw up. Of course it made me nervous, and I thought well maybe she is just not ready. So I waited a few days and tried again. Same reaction. So I said, okay no more rice. We went to Oatmeal infant cereal... same thing. I couldn't remember in all my years of childcare ever seeing this. I remember thinking hopefully her system is just not ready and it's not an allergy thing. I looked for answers- sometimes google is your friend. I found my answer grains were actually quite hard to digest and the docs were "quacks" for still telling people to use those first. I remember feeling relief- okay this is normal. Her system just isn't ready for grains. So we moved on to veggies and things seemed to be going quite well. We used the try and food for 3-4 days then would move on to the next veggie. When I tried banana for the first time. The vomiting returned... hmmm it's probably because it is store brand and her system is ready for the citrus acid that is used to keep it. Then after a break while trying veggies we came back to sweet potatoes. She ate, we played, she nursed. It was a crazy day as our dog was sick and we were trying to leave for a trip- I put her down for nap ready to get things done. I heard an odd noise I turned around to see she had vomited everywhere, and she wasn't done. I ran to her picked her up to try and get her out of the mess. Great. Sick baby. Just what I need. I gave her a bath thinking like her other vomiting spells it would be over. However, it continued and continued for HOURS the poor baby was puking every 10-15 min. I called my pediatrician, the nurse informed me a flu had been going around and gave me instructions to keep her hydrated. Okay, this was normal. It's just a flu. I can get her through this. It was a hard day. She was so sick and so exhausted and lethargic from the experience. However, by the end of the day it seemed we had made it through and she was nursing. We went on our trip and we took a break from foods for awhile while she got better. Then a couple weeks later something happened that I knew was NOT normal! 

Ainsley was now 8 months old, the never ending comments on how TINY she was had really started to bother me. We had been struggling with this solid food business. I never felt right about it and seemed so stressful. I would get questioned from friends and family whose intentions where loving- why isn't she eating more. You need to just let her try more things. She won't choke. Just do it. I had started to get more brave about things when I had an apple I would give her a taste or put things in the mesh feeder. One morning I went to give her sweet potatoes. Something told me loud and clear- DON'T FEED THIS TO YOUR BABY. I didn't listen. Instead I listened to all the comments of how I was babying her too much. How TINY she was... I needed to feed my baby I needed to get over it she would figure this out.... I fed her and WHAM she got the "flu" again. The exact same thing that happened a couple weeks ago, happened again. She ate, she played, she nursed and went down for nap and soon was up vomiting. This time was even worse. The poor baby was so lethargic I was terrified. I was about to take her to the ER when one last big puke(After 3 hours of constant puking) seemed to "bring her back to life". We were in the bathroom she threw up in the sink and then looked up in the mirror and waved at herself. It melted me totally and completely. My poor, sweet baby. I thought the last time she had this "flu" she had eaten sweet potatoes that morning too. This was not normal...

FPIES

I called my pediatrician again. I told the nurse I believed we were dealing with some kind of food allergy and wanted to make an apt right away. Once again I stopped all solids and turned to my trusty friend google. I stumbled on something called FPIES. Food Protein Induced Enterocolitis Syndrome (f-pies). The reaction described what was happening to my little Ainsley exactly. When I went to the pediatrician she confirmed what I thought, and referred to a gastrointestinal, and allergist specialist. I felt grateful that our care providers did seem to know about FPIES because I had read so many other storied where parents spent a very long time being told-it was reflux, or normal... when clearly it isn't. We got the official diagnosis this last week for Rice, oats, banana, and sweet potato based on her history with these foods. There are many scary parts about FPIES, the worse being you really can't test for triggers. IT is a non IgE allergy and therefore the only way to know is try. As a mom, a person who is supposed to protect her baby from things that could potentially harm her this is terrifying. On one hand she needs to find safe foods and things to help nourish her body and help her grow- yet those things could also be potentially toxic to her body. 

GOOGLE is not Always your Friend

So like any mom out there I continued to search for "answers" where do I start.. How to I go throught this and nourish and protect my baby. While there were many blogs and things that could be very helpful when it comes to recipes and how to live everyday life with a baby with severe allergies... there are also many stories that a parent starting this journey SHOULD NOT hear or read about. FPIES is SCARY there are more mild cases (I am PRAYING we will fall into this category) and really severe, terrible, awful ones. I started to worry fiercely about the future of my sweet girl. I felt as if I were drowning...Suffocating in this life that could be.  Until my sweet husband saved me... he saw me flailing and gasping for air. He helped remind me that we are not there. That every FPIES child is different and we can only take Ainsley's journey day by day. He reminded me we need to be grateful and live in our successes. 

It's only the beginning. 

We have begun our first official food trial with carrots and it seems to be going well. So I will live in that success. I will live in my sweet girls smile, and happy demeanor through all of this. I will be brave, and strong for her. With the help of my loved ones, sweet husband, and a GOD who I truly do believe knows and loves  my daughter and HE can help guide me. This journey has only just begun and through it I must remember...