FPIES Update

It’s March? My baby is almost 9 months old? HOWWWW does this happen time and time again?! I wanted to come on here quickly (because I can never find the time to write) and update everyone on our progress.

Since our initial diagnosis and acute event with oats, she was put on “gut rest” until about the middle of January. We got the OK to begin food trialing at home. She has been passing everything so well! Bananas, Pears, Peaches, Apples…I have tried Pumpkin and a few other veggies however she is determined she will NOT eat those. Being an 8 month old however, she really wanted some finger foods to eat on her own. Rice is a big FPIES trigger so I have been avoiding anything with rice flour- which would be ALL the baby finger foods 😦 puffs, mum mums etc. I did find Quinoa squares that are banana and broccoli. She LOVES THEM. Chalked this up to a great find as they are nutritious and she has not had a reaction to them.

We started to wonder if little girl even had this so called FPIES. Though her initial reaction was pretty darn ‘text book’ she hadn’t been having any reactions to anything else? I had assumed she was clear on broccoli because she was getting it in the quinoa bites every day. I found an organic baby food pouch that had only apples and broccoli in it so I ASSumed it was safe, and treated it like a passed trial food. Last night was her second night eating it and she went crazy eating almost 2 entire pouches! She was bathed, nursed and went to bed.

BOOM .

When you wake up to your baby screaming at night it startles you. When you go in to find her drenched in her vomit and crying, you want to break down and cry. She wouldn’t open her eyes, she was just crying into my chest. Of course I turned on the light and woke my husband up. The wonderful world of FPIES is so. damn. frustrating.

“Is it the Broccoli?”

“Did she eat too much?”

“She doesn’t seem in pain, is this an FPIES reaction?”

All she wanted was to nurse so I nursed her and rocked her and she fell back asleep fairly quickly. Still covered in green vomit. She had no stomach pains, no more vomiting, peacefully sleeping in my arms. Her body temperature did seem rather cold but she was OK. She ended up sleeping VERY well the rest of the night even for her!

This morning I am left with SO MANY freaking questions. Was it Broccoli? Do I stop the pouches? Do I stop the quinoa squares even though she has never reacted to them? I am thankful for her allergy Dr. whom I can message all these questions too. However, there is NO ONE who can really give me a definitive answer. There is no blood test that can show me what she will react to, there is NO list of magically foods that will trigger her or not.

It definitely gave me a quick slap in the face though. Because she has been doing so well I got careless. I started experimenting with what I thought would be safe and it didn’t end well. Back to being crazy careful, cautious and obsessive with her.

Thank you to EVERYONE who reached out to me after my last post. I seriously was overwhelmed with the love and support I got from family, friends and STRANGERS! It helps knowing I live in a community where I can grow and learn from other moms.

On a happier note, Em is now full blown crawling. Which means a training course for the other kiddos in the house who LOVE to leave very small things on the floor all the time! She is cutting her bottom two teeth at the moment and is absolutely so much fun. We will continue food trialing and I will update again around her 1 year mark when we do dairy and oat in hospital trials! Thank you again guys, really truly thank you!

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