Global FPIES Day 2017

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Fo Global FPIES Day 2017, I would like to share our story with you. FPIES stands for Food Protein-Induced Enterocolitis Syndrome, which is a poorly understood, non-IgE mediated allergic condition. While our oldest daughter has many diagnoses, FPIES is the one that has the biggest impact on our daily lives.

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This is a short clip about her first FPIES reaction.

https://defendingjoy.com/wp-content/uploads/2017/10/IMG_8572.mov

For those of you who can’t watch the video, her first reaction started when she was just a few hours old. She was projectile vomiting and desaturating (she was turning blue from low oxygen levels in her blood). She was rushed to the NICU at a Children’s Hospital, where she stayed for a week. They released her without a diagnosis other than reflux, and still projectile vomiting.

Fortunately I was able to find information online about maternal diet affecting reflux. I changed my diet to eliminate dairy and soy when she was 3 weeks old, and she slowly improved. But then when she started eating solids, it did not go well. Through this journey I have had to learn a lot, which is what inspired me to start this blog, and share my knowledge with others.  You can read more about how FPIES effects our lives in my guest post over at No YOU Need to Calm Down.

We got the correct diagnosis of FPIES when she was 7 months old. Many babies take even longer to get diagnosed. Symptoms are frequently dismissed as being caused by a stomach bug, or even blamed on overly worried first time mothers. Additionally, many doctors remain unfamiliar with it, or have many misunderstandings about the condition. I would appreciate shares of this post to raise awareness of FPIES.

For more information about FPIES, here are some good sites:

Kids With Food Allergies

FPIES Foundation

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