My child’s FPIES diagnosis was delayed (1.5 years old), but we had a classic presentation(dairy and soy) with chronic symptoms, failure to thrive, malabsorption. She was tested twice for food allergies and the results were negative. Thankfully, she never had acute symptoms like so many of your kids which ended with you guys at the ER, but she vomited 3-5 times a day.
By the grace of God, I figured out what worked to stop the vomiting. After the diagnosis, I was able to stop the chronic diarrhea by treating it like an allergy.
Here is how:
I removed all traces of dairy, soy, soy bean, etc.. My pantry purged of ALL processed foods and ‘enriched’ flours, candles tossed, soaps tossed, crayon and coloring supplies checked, toys washed) and scrubbed the entire house. I routinely wash all high tough surfaces because her sibling is allowed milk. We wash her siblings hands and face after consumption of milk.
We peel all store bought fruits and vegetables because those are coated with wax and wax can be made with dairy, soy, soy bean. We only buy 100% juice with no additives. Vitamin E is made in a process that uses soy as a derivative and will have soy proteins.
We don’t do restaurants, public tables, play dates with snacks, allow people to bring food over, church nursery or play with other people’s toys. This may not be an option for many because of daycare and school so I am grateful. When we are out and about, frequent hand washing and pacifiers keep the allergens out of her mouth.
Neocate recipes did not work for us. She wasn’t into them. We do suppositories for high fevers.
Hope this helps someone. DM me if you have any questions.