FPIES stands for Food Protein Induced Enterocolitis Syndrome and our youngest son has it. This blog follows his story on this journey: our challenges, our triumphs, our adaptations as we navigate through this new world created by FPIES.
Mothers Intuition
Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Wednesday, July 27, 2011
Inspiration...
The family's story is something that hits close to home for many FPIES families...."I googled baby vomits rice cereal"- wow, did we all do that? Because who in the heck is allergic to rice? FPIES kids are, it's bizarre but very real, and scary. This mom's account of her daughter's reaction is an emotional account for any FPIES parent, as her daughter is one of the numbers of FPIES that went into full shock with the ingestion of rice. We are thankful, our little man has experienced shock symptoms but not to this degree. The statistics show that ~20% of FPIES children do (although I would dispute that number to be much higher based on what is shared in support groups). The interview is a window into an FPIES families world.
The news report includes an interview from the family physician who helps manage their daughters care, with emphasis on the need for ruling out other conditions, and the symptoms caused from an FPIES reaction.
Thank you to Ginny and her mom for a great awareness story on FPIES!!
Here here!
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