I've met some wonderful parents, mostly mamas, on Myra's (our?) FPIES journey. They've helped me come to some relieving conclusions during some low moments. Also, hindsight is our friend.
So far, Myra's safe foods are Neocate Infant formula, peaches, coconut, and potatoes. She has also done fine with cane sugar, salt, baking soda, cream of tartar, and citric acid. Her suspected fails (likely fails in hindsight, but not officially trialed since her FPIES diagnosis) are soy, green beans and possibly some grains (wheat and oats). Her known fails are dairy, green beans, sweet potatoes...enter carrots.
After a couple vomiting episodes back in September, I brought Myra to her doctor and he referred us to an allergist. Based on the vomiting after new foods and some indicators on her blood work, we both suspected food allergies. There was a five week wait for the allergist, so while we waited, we changed our approach to solid foods and I continued to nurse (my only dietary restriction at that time being dairy as we thought she just had a dairy sensitivity). We stopped baby led weaning and went to a much more structured four day trial for new foods. If she didn't vomit, get hives/rashes, we called it good after day four. She seemingly passed peaches, pears, carrots, sweet potatoes, turkey, and pineapple. Coincidentally, she started waking more at night (five times most nights) and screaming plus refusing naps. This was very similar to what we experienced in her early months that led to me eliminating dairy. We didn't make any connection to the night wakings/drama because those foods are some of the least likely for IgE (traditional) food allergies. We kept on with those foods and figured the night stuff was a phase, a developmental thing, a sleep regression, anything but food related. The allergist appointment was mid-October and that was our first time hearing of FPIES. Upon doing some research and connecting with FPIES families, it turns out many of the most common safe foods for "allergic babies" are the most common triggers for FPIES babies (sweet potatoes, green beans, rice and grains). Most of this is in the post about Myra's FPIES journey, but bear with me I'm getting to my point. When we started over with food trials after Myra's FPIES diagnosis, we chose sweet potatoes first. It was risky since it's a common FPIES trigger, but she had had it already so we gave it a shot. I knew the first night it was a fail, but we pushed through for three more days to be sure. Neither Trevor nor I wanted to dismiss a food because of one bad night.
Our sweet potato fail was very discouraging. I had a mini meltdown about it. We finally get a diagnosis, plan longer food trials, choose a food after being completely off solid foods for over a month, and fail. Thanks to a fellow FPIES mama, I was able to bounce back and realize that failure is still progress. We need failures to know what we have to absolutely avoid and with which food groups to be extra cautious (i.e. legumes or grains). Failing a food trial also helps us see what her fail patterns look like. Some FPIES babies don't show any signs of a fail until their 10th exposure, or until they take a break from a food then come back to it. Some have very unique fail symptoms, or little mini symptoms that appear before the big, scary ones. This failure wasn't a total loss. It was progress.
At that point, we decided to get her on an amino acid based formula (Neocate Infant) to get her system to some sort of a baseline. We gave it a couple weeks and she improved. We chose peaches (to help with constipation thanks to the formula), then coconut (to give us healthy fats and versatility: flour, oil, manna, flakes, chips), then potatoes (to give us versatility with cooking and textures). We chose carrots next because we wanted a vegetable that would help with constipation and we were optimistic since she had already had it. We hoped all the craziness of September could solely be attributed to the sweet potatoes (and soy in my diet).
We gave Myra one bite of pureed carrots at 8:00am. She was seemingly fine all day, although her afternoon nap was pretty short. She has been a bit stuffed up which makes drinking out of a bottle more difficult, but for the most part she drank her formula well and ate quite a bit of potatoes and peaches throughout the day. She went to bed at 7:00 pm like usual, fell asleep right away. She woke up (but didn't even really seem awake) at 7:30 pm whining which turned into moaning. I gave her about 10 minutes (while I panicked and went to dramatic paranoid FPIES mom mode) and she went back to sleep. Phew! Dodged a bullet there, right? Nope. She woke up at 8:30 pm and did the same thing, but for longer. I went to her, suctioned her nose (clear), and started rocking her. She stood up in my lap, poked at my cheeks, showed me her doll, waved and said "hi! hi!" I tried to get her to relax, but she was just wired, so I put her back in her crib. She was quiet for about 10 minutes, then the whining and moaning started again. Trevor came upstairs and asked if she had been like this all along and I explained what had been happening. We both knew it was a different moan. It's awful. It's the sound I would expect to hear from someone who has stabbed and left for dead. I made myself a bed on the couch, went to get her and tried to sleep with her there. She just wanted to play, talk, jump. Some of you may think, "she must not really be in that much pain if she snaps out of it that easily!" Wrong. My conclusion is that she's bothered so much, she can't relax and go back to sleep. Once we can somehow get her situated and back asleep, she will stay asleep for a few hours. Then we start over when she wakes again. (She slept through the night, 12 hours straight, the previous three nights.) Back before we had a clue what was happening (dairy issues in the early months) she was very easily consoled. No one seemed to believe something was wrong because she would quiet down and go back to sleep if I just rubbed her belly. When it's teeth, constipation pain, or illness, she doesn't turn into playful Myra and rocking back to sleep works right away. This is her [chronic] fail pattern. This is progress.
Now, the timing of the fail (ingestion to fail symptoms) may not be the exact same every time. Since she has already had carrots (and sweet potatoes), I'm not surprised we noticed the chronic fail (sleepless nights, abdomen pain, but no vomiting or diarrhea) on day one. For a completely new food, it may take a few days or even a break then reintroduction to see these signs, but we know better what it looks like.
FPIES aside, can't this same idea be applied to most failures in life? Failed relationships help us realize what we really want and what doesn't work. Failed classes help us narrow our scope and find our strengths and passions. Failed attempts at fixing things around the house teach us what doesn't work. Failed planning (events, work stuff, budgeting) shows us what we need to do differently next time. Failed cooking encourages us to hone our skills in the kitchen. "Failed" medical tests tell us what needs treatment. Failure isn't a total loss. Failure is progress.
PS-don't roll your eyes at me just yet. It's not all rainbows and unicorns over here. Want to know my fail pattern? Exhausted, lazy, crabby, coffee, poor food choices, coffee (yep, twice!), neglecting house work, and spending my entire day trying to nap. Thankfully it doesn't last long.
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