10 Things Other Parents Need to Know About FPIES

This week a good friend of mine is helping other parents with children diagnosed with FPIES. FPIES stands for Food Protein Induced Enterocolitis Syndrome. I met this mom a few years ago when her son was newly diagnosed. I was blown away at the journey she had been on to finally get a diagnosis. Now several years later, she is more than willing to answer the 10 Things Other Parents Need to Know About FPIES.

10 Things Other Parents Need to Know About FPIES Food Protein-Induced Enterocolitis Syndrome)

A quick internet search informs you that FPIES is a rare disorder characterized by an allergic reaction to food affecting the gastrointestinal system. The most common culprits are milk, soy or rice, but I know from my friend that those three only scratch the surface of the things that affect her child, and many others like him.

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10 Things Other Parents Need to Know About FPIES (Food Protein Induced Enterocolitis Syndrome):

In hindsight, my child’s symptoms were: Delayed onset of severe vomiting spells 2-4 hours after ingesting the trigger food. We’re talking full-on Exorcist-style vomiting. Lasted about 3 hours and he probably vomited 25-30 times during that time period. The moment the last molecule of offending food left his body, it was like someone flipped a switch and he was totally fine, color came back instantaneously, and he was asking to eat.
The specialist who helped us the most: Pediatric GI.
The specialist we didn’t expect to need: Endocrinologist and a feeding therapist.
It took us this long to get a diagnosis: 3 years.
The biggest financial expense because of this medical condition is: Monthly cost of medical food to supplement his diet. Thank goodness my insurance covers 80% of it.
The organizations that helped us: The FPIES Foundation and a Facebook group I was so fortunate to find whose members are mothers of children with medical needs. We support each other emotionally and with advice, suggestions, anecdotes, and positivity.
I wish my friends and relatives knew: I am not a crazy person. There’s a reason I am so obsessive about handwashing and cross-contamination of food. I bring my own silverware to restaurants for my son to use, put a ziploc over the top of his drinks. He is only allowed to consume specific brands of food. I read every label and then research online every food before he’s allowed to have a bite of it.
Our ray of hope: Almost all children outgrow FPIES by age 12. They just wake up one day and it’s gone. I look forward to that magical day.
Our biggest cheerleaders and supporters: Other parents who have children with rare diseases and/or medical needs.
I wish I had known: I only have one child, so I never had practice before. Doctors don’t know everything (which is obvious). What maybe wasn’t so obvious to me is that parents (even new parents) know their children better than anyone else. If you believe in your heart that something is wrong with your child, you’re probably right.

I appreciate my friend for taking the time to answer these questions. Hopefully someone new to FPIES or with similar symptoms find comfort in reading her message. She mentioned The FPIES Foundation as a great resource for information and support. When friends are diagnosed with any medical condition, I always urge them to seek help through a national non-profit organization that specializes in the specific condition.

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As always, please remember that none of the information on this blog is meant to diagnose medical conditions or take the place of a consultation with a medical professional. It IS however meant to offer support – lots of support.