FPIES is Scary!
This blog is always handwritten from my perspective and my clinical experiences — no AI slop found here!
FPIES (Food Protein-Induced Enterocolitis Syndrome) is a non-IGE mediated gastrointestinal food allergy and a relatively new phenomenon within childhood allergic disorders. The hallmark of FPIES is a delayed reaction of 4 to 6 hours after the child eats their offending food, with the primary symptoms of profuse vomiting until dehydration, lethargy, and shock as the ultimate result. Many families take their little ones to the ER or call 911 as the symptoms progress to the shock phase because this is a terrifying event to witness! Unfortunately, FPIES can be difficult to diagnose due to confusion with stomach bugs, food poisoning and poor education about FPIES within the medical profession. Once diagnosis occurs, Zofran is typically prescribed in case of accidental ingestion and parents are told to avoid giving their child known triggers. Another tricky aspect of FPIES is that many families report their child had previously eaten the food many times without any issues…..….and……....then……..FPIES!
Earliest FPIES reactions typically occur around 6 months of age in the same time frame of early introductions to solid foods, although research shows it often takes up to 2 months to receive an official diagnosis after the first reaction. Because “vomit to shock” is traumatizing for the entire family, there is typically a lot of fear about continuing to introduce new foods and exposing little ones to possible new FPIES triggers. Research states that most infants diagnosed with FPIES only have one trigger food but lived experience shows that many children have more than one trigger, often with variable symptoms that don’t also mimic classic vomit to shock. “Atypical FPIES” is typically associated with diarrhea, eczema, swelling of the mouth and airway, etc. with ingestion of trigger foods, in addition to at least one classic FPIES trigger. Some breastfed infants are reactive to triggers through their mother’s milk and some are not.
FPIES is hard, yall. It is so different from case to case and there is not a standard protocol to safely reintroduce trigger foods (and avoid new triggers) so parents often receive mixed messages from care providers about moving forward with solids.
Mixed messages typically follow this pattern —— Follow this food list. Most kids only have one trigger so don’t worry about introducing new solids. Follow this introduction ladder. Avoid triggers for 6 months. Avoid triggers until 2 years old. Avoid triggers until 3 years old. Don’t worry because every child outgrows their triggers by 3 years old (spoiler - not true!) Wait to see what happens with accidental exposure. Give new foods 15x to prove there is no reaction. Give new foods every single day to avoid reactions.
PURE CONFUSION for so many families!
It is so common to live in fear and desire to limit your little one’s. exposure to new food with FPIES - especially if you feel like you are navigating this on your own with little support from your child’s doctors or if the support they provide is not in line with your food values.
As an IBCLC focused on holistic lactation care, I am uniquely positioned to support you and your FPIES baby into healing their gut with gentle introduction of nourishing solids to support their growth and development.
You are not alone. I am here to help!
1. Food Protein-Induced Enterocolitis Syndrome.
2.Clinical Features and Resolution of Food Protein-Induced Enterocolitis Syndrome: 10-Year Experience.
The Journal of Allergy and Clinical Immunology. 2014. Caubet JC, Ford LS, Sickles L, et al.
3.Different Patterns of Foods Triggering FPIES in Germany.
The Journal of Allergy and Clinical Immunology. In Practice. 2022. Lange L, Gernert S, Berger M, et al.
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