Food Frustrations: An update on our FPIES journey 2 months later

Hello! I am still here!

Wow, what a crazy summer. I’ve been wanting to write but have just not found the time. Summer is always the busiest for my Hubby with work, often working evenings and weekends to make up for any vacation time as well as keep up with the demands of urgent projects. We were able to get away for some fun family time with both sides. Huge shout-out to all our family who have been so supportive, encouraging and diligant in keeping Miss A safe during our vacation. It was a source of anxiety to imagine all the hazards of food she could find and consume, but everyone was so careful and it all went well. I have also been incrediably thankful for the online support I have recieved from other FPIES parents who are full of knowledge, encouragement and a complete understanding of our frustrations. (So if you’re reading this, thank you!) I will be writing a bit more detailed on Miss A’s journey both to help answer questions from friends and family, and to hopefully help any other FPIES families finding themselves in the same place.

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We are starting to settle in for the fall and looking forward to getting into a routine, both with homeschool and more food trails.  In the last months we have had some huge successes in Miss A’s food trials, earned through some serious sacrafice on my part. Miss A has two different types of reaction to food, she can react “chronically,” typically through breastmilk, which is mucousy and/or bloody diapers, pain and discomfort, gas, sweaty skin and sleepless nights. An “acute” reaction is vomiting, diarrhea, lethargy, dehydration. Her diagnosis was based on acute reactions to banana, avocado and rice. However as we learned more about this syndrome and kept a careful observation of her, we learned she was having chronic reactions through breast milk as well. Not all FPIES kids do, but we soon learned Miss A is quite sensitive to what I eat.

So began my quest for the illusive “baseline” diet, where I find the magic combination of food that does not result in any reactions. I had been dairy free since she was weeks old, recognizing her allergy to that early (thanks to my experience with middle child Miss B). After the FPIES diagnosis I switched to a Paleo diet. She was still reacting so I then bumped down to a Auto Immune Protocol Diet removing all inflammitory foods such as grains, eggs, nuts, seeds, nightshade vegtables, sugar and sweetners, and processed foods.  There had been some improvement with her chronic reactions, but we still weren’t at baseline (no reactions). So like many other FPIES momma’s I cut out most foods going on a Total Elimmination Diet (TED). I chose one or two foods from each group in hopes that we could reach baseline and then slowly add foods back in. I scanned FPIES lists of most tolerated foods and went with lamb, pears, blueberries, quinoa, parsnips, zucchini, coconut and olive oil. This is where things changed. I was shocked and estatic at the change in our little girl. Surprisingly the difference happened overnight. We celebrated her first normal poop! Hallelujah!

 

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Keeping track of it all is serious business

 

From there the choice is to introduce new foods for myself, or her but not at the same time. It is a slow process. Miss A now has 3 safe foods, quinoa, pears and sunflower seed butter. We are currently trialing coconut with high hopes. I have since been able to add a few items to my diet as well, my most recent additions being grass-fed beef and russet potatoes. I have come to greatly appreciate the many flavors of food and highly anticipate being able to eat more. It has been a challenge, not being able to eat out or have easy snacks, and making separate meals for the rest of my family. I’m often hungry. Since this FPIES journey started I have lost about 30 lbs. One of my greatest struggles is finding the balance between keeping Miss A healthy, and keeping myself healthy with energy for the rest of my family. We have put much thought into starting Miss A on a highly specialized elemental formula and may be at the point of turning to that for extra nutrients. But it’s not a guarantee she will tolerate that either.  So this is where we are now.

 

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Gumming on a quinoa sunbutter pancake

 

With the leaves changing colors I am thinking I will have to introduce pumpkin next, as I am one of those crazy Pumpkin spice lovers, haha.  I hope to post some of the recipes I have found or created to help other TED mommas and FPIES babies.

I was originally planning on starting school a bit later, but the girls are so excited and eager that we will start tomorrow, coiniciding with the public school kids. I’m excited to share with you all how are first week goes and all the fun we have 🙂

Thanks for listening! Coming up next, recipies and starting school!

 

 

 

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