Friday, May 15, 2015

Milk, Soy, FPIES-OH MY!!

In honor of national food allergy week, I thought it was appropriate to share our story/way of life.  

For anyone who doesn't know, (because I believe anyone in our lives is very aware) our daughters have allergies to milk and soy.  Our oldest was borderline failure to thrive, did 7 days in special care at birth because she stopped breathing, and was extremely sick for the first 2 years of her life as a result of her allergy to cows milk.  We were given every diagnosis one could think of....Cystic Fibrosis, Silent Reflux, Eosinophilic Esophagitis, etc.  It wasn't until our amazing GI did an endoscopy and biopsied SK's esophagus that we got the real answer-she was severely allergic to milk.  We changed our diet and she finally gained weight after 2 years.  Thankfully she is now 5, can occasionally eat a piece of pizza, and is not allergic to soy.  This is the face of a child with milk allergies....

Our youngest was recently diagnosed with FPIES.  Her reactions to milk or soy have always been very severe and a lot harder to deal with than SK's.  FPIES is a non-IgE food allergy that can become life threatening.  FPIES is a rare disease, but one that we are embracing and learning more and more about daily.  Here's some information if you want to read more about FPIES.

The diagnosis has not changed much for us, other than understanding her severe reactions.  We avoid milk and soy already so our hope is that we no longer have any incidents!  It is extremely difficult to eat out and to constantly have to say to people, "no she can't have that".  My own mother in law is often offended that I turn down food for K because I can't guarantee the ingredients.  Most times I feel like she thinks I'm being dramatic and she normally makes some comment that "one bite won't hurt her".  Sadly, one bite is all it takes for her to earn us a trip to the ER.  We have to check EVERY.SINGLE.LABEL.  Just this past weekend we traveled out of town for the weekend.  Imagine your two kids are hungry and screaming on your 4 hour ride.  Most people stop at a fast food place, grab a bite to eat and get on their way.  We have to first spend our time googling restaurant menus, and then we have to be very careful about making sure she gets the right food for her.  I am happy to report Chickfila and Wendy's have safe options for us!  Wendy's even posts the food allergens on the wall so it was super easy to find!

This is the face of FPIES....

I get asked all the time what some of our "standard" things in our home are.  Thankfully now there are so many alternative options available.  These are a few of our staples...
This is our daily great and is now at Walmart and Food Lion.

This is a great margarine I have used (found at Walmart), but it does contain SOY.

This is our favorite pancake mix...just add Water and we are serving up some fluffy carbs!

This is one of our favorite cheeses that we use to make our own pizzas or grilled cheese sandwiches!

Some of our favorite recipes..

 Turkey Pumpkin Chili

Cake/Cupcake Recipe

Some of our favorite snacks....
Veggie Sticks
Cereal (we eat a lot of cheerios-thank goodness for a variety now!)
Peanut Butter
Fresh fruit and vegetables

I can remember when we first were learning about food allergies with SK.  It all felt so overwhelming and defeating. However, I can honestly say that now, 4 years later, it is a way of life.  We check labels on all our food.  We will probably politely turn down a treat for K at a party and we ask that you not be offended. It's honestly not about your food-it's about her health and us avoiding a trip to the ER.  Most of the time we pack our own cupcake or we bring a bag of snacks so you don't have to worry!  We are very blessed to have such awesome friends who try their hardest to make sure that they include my girls and for that I am constantly thankful.  I always encourage anyone to ask us questions and share resources if they need help or ideas living a milk/soy free life!


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