Oct 14 is FPIES Day

It’s Global FPIES Day.

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Today I am reminded about the screaming and arching, vomiting and diarrhea, sleepless nights, horrible bum rashes, and awful mucous filled diapers with specks of blood that have been a part of Miss A’s first year. However I am choosing to think about how I’m grateful we received an early diagnosis and a helpful knowledgeable and supportive medical team.

I think about how much time I spend cleaning the floor and scanning for crumbs, at home and especially outside the home. I’m nervous to take my girl to other houses and buildings not knowing is she will find food she will react to. However I am so thankful for family that understands and watches out for her, and big sisters that try their hardest and are carefully taking care of their baby sister.  I am also so thankful that she has not had a violent vomiting reaction since her diagnosis.

I think about how I have been hungry and extremely tired and bored with my limited diet, but yet so thankful that I have food to eat and the ability to make life sustaining milk for Miss A.  I have a new appreciation for the depth, variety and flavors of our foods.

I think about how Miss A is currently limited to 8 foods, yet I’m so thankful that she is excited to eat and happily chows down a tonne of food, oblivious to the variety she is missing. I adore how she stands up next to her high chair yelling to be put in, or how she yells loudly when she finishes all her potatoes, wanting more.

I think about how in 4 months she has gained less than 1lb. At one year she is sitting at 16lbs, approx in the 3rd percentile. However I am thankful that she is not losing weight, that she is still soft and squishy, she is still happy and otherwise healthy and developing well.  She is a busy, talkative girl learning new words all the time. This week she now says, “All done” after eating and “Sit down” while daringly standing up on her chair.

I think about the time I spend reading labels, phoning companies for hidden ingredients, searching for how certain ingredients are made or sourced.  I am thankful that the information is out there, I am thankful for google (haha) and thankful for my FPIES support groups that a full of knowledge. I am very thankful for the increasing number of companies that are creating food products that are clean without cross contamination, that are non-gmo, organic, without additives and have helpful customer service. I’ve learned many new things, like cream of tar tar is a residue left over from fermenting wine, so it is sourced from grapes.

It has been a stressful and exhausting year. The constant awareness, hyper-vigilance and self restraint is draining. However I am thankful that we are making progress however slow it may be. I am thankful that Miss A’s sleep is drastically improving, which has done wonders for my mental health.

I am so very thankful for Miss A, FPIES and all.  My heart swells as I watch her play and learn. I love and adore her so much, I would do it all over again and not change a thing. Her challenges have given me a strength, determination, and discipline I never knew I had.

 

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Quinoa Sunbutter Pancakes: FPIES Recipies

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Pancakes! Though I cannot claim that they taste or feel anything like normal pancakes, ha! They are flat and oily and taste just like their name, sunbutter and quinoa. I added the sunbutter to improve the flavor from just quinoa.  Since being on a TED, I really enjoying having something a little different. I drizzle mine with pure maple syrup or cooked blueberries and maple syrup (with Tapioca startch if I want a thick sauce).

Again, I have no measurments for you, but I will try to measure it next time I make them and will update the post.

I mix sunbutter, coconut oil and honey together (Use maple syup if for baby under 1). Then I sprinkled the quinoa flour in till it had a smooth spreadable consistancy. If it gets too thick I add water, coconut milk or even pear juice.  Lastly fry them in a pan with a small amount of coconut oil.

Coconut Melties: FPIES Recipies

We recently introduced Miss A to coconut hoping it would be a great source of fats for her. She loves it! It also opens up a multitude of possibilities as there is coconut oil, shredded coconut, coconut flour, coconut milk, and coconut butter or manna. One of our challenges though is she refused puree. She wants to feed herself. But she only recently popped her first 2 teeth. So she has limited foods, that have to be in small soft chunks. Time to get creative. Enter the Coconut Meltie. IMG_7038

I’m afraid this isnt excatly a “recipe” as I never measure anything. But you can’t mess it up!

I took her safe foods, blended together and froze them in small plops. This way she can pick them up and feed herself, yet they melt fast into smooth soft puree.

I used pepared quinoa flakes, pears and coconut butter. Blend them together so they are a soft thick puree. Then make little plops into a freezer safe container.

Enjoy they melty goodness.

 

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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!

 

 

 

FPIES trials

It has been almost a month since Miss A received her diagnosis of Food Protein Induced Enterocolitis (FPIES). It has been a difficult month including many changes and struggles to form new habits.

We have had to focus intensely are making sure the floor is very clean, as if she eats a crumb, she could react. This has proven difficult with a 6 and 4 yr old in the house! I have changed my diet completely and am on a limited number of foods. I’ve been scouring the internet for new recipes, ideas, hoards of FPIES information, and alternative medicine. I feel like I have ventured down many deep rabbit holes of the world wide web. I inspect her diapers thoroughly, smell her diapers, talk about dirty diapers, and take pictures of all her dirty diapers, diapers, diapers.

We are currently on day 3 of her first food trial since her first reactions a few months ago. I am getting hopeful that apples are a safe food for her. We have a list of foods that are statistically lower to trigger an allergy. We pick one to trial and feed it to her, starting with approx 1/2 tsp, once a day, everyday, increasing the amount each day. The length to trial a food before deeming it safe varies greatly for each FPIES family. Some kids always react within 3 exposures to a new food. Other kids don’t react till the 7-1oth exposure. Some families have noted that if they don’t eat their safe food everyday, they could suddenly become allergic to it after taking a break from it.  Others might react from having it too much! It can all be so confusing. We have so much to learn about Miss A’s condition and how her body will respond to new foods. It is requiring an immense amount of focus for me to strictly concern myself with the present. I tend to get caught up in the “what ifs” and worries of what to do and how to manage in the future.

Despite putting everything she finds on the floor in her mouth, she is not interested in the apple. I gave her purée and I gave her small chunks of cooked apple. She loves grabbing them, squishing them in her fists. She brought them to her mouth and promptly spit them out. (I’ll admit I even left the ones she dropped, hoping she would at least eat them off the floor!)  If this continues with other new foods we try, we may need to look into concerns like food aversion and tongue and lip ties. It seems one concern just leads to another, and my mind races away like a train.

Thank you all for your support and encouragement in our journey, it means a lot to us.

Miss A enjoys eating ice at meal times, to help her with her motor skills and “how to” eat. Hmmm, maybe I should give her frozen apples….

Miss A: Divine Strength

This last week our youngest, Miss A (currently 9 months), was diagnosed with Food Protein Induced Enterocolitis Syndrome (FPIES). We have a challenging road ahead of us, full of unknowns and uncertainty. The diagnosis is just the beginning.

In short, it is a delayed (symptoms occur typically 2-3 hrs after ingestion) food allergy that cannot be tested for (trigger foods do not show up on standard allergy tests). The danger is anti-histamines and epinephrine have no affect, and the outcome is severe dehydration from repetitive vomiting, which can lead to shock.

Really we don’t know much of what’s to come. So far we know of 4 foods that make her sick, with no known safes yet. The only way to find safe foods is trail and error with extremely vigilant label-checking and documentation of foods tried and reactions that follow. Hopefully these 4 foods are all she reacts to, but it is possible she could have numerous triggers. We also are still unsure of how sensitive she will be to exposures, and how severe her reactions will become.  The good news is kids typically out-grow this condition around 3 or 4 yrs of age.

Those that know us well, know our family is riddled with food allergies. Each person having different allergies, our list of safe foods we can share is quickly decreasing.  I’m thankful that I am comfortable in the kitchen and usually enjoy finding recipes that work or experimenting to create new ones that fit our family. I lack discipline in the cleaning department though, and will need serious focus to ensure my floors are completely food-free and safe for my now crawling babe. (Side note, she crawled on hands and knees for the first time today! Yay!)

After a few days of letting this news sink in I am fluctuating between confidence and hope, and anxiety and fear. I am typically very optimistic and hope that I can continue to take this one day at a time, resting in God’s strength and peace. After all, the meaning of Miss A’s name is divine strength; to receive her strength from God.

 

If you want to know more about FPIES, go to http://fpiesfoundation.org/about-fpies-3/