- What is FPIES
- Diagnosis process
- Advice to manage it
Today, no one knows the odds of a second baby having FPIES if the first did. The possibility of dealing with FPIES again was certainly a significant factor in the timing of our decision to have our second baby. We went into marriage hoping for two, but managing through an FPIES situation involving 15 trigger foods took its toll.
FPIES is Food Protein-Induced Enteroncolitis Syndrome. It is a non-IgA allergic reaction to the proteins of certain foods when passed through the GI system. Symptoms vary based on the intensity of protein exposure, level of sensitivity to a certain food protein. Different children react to different foods. One sibling may have it while the other doesn’t, or the other may have it to the same or different foods. Typically children have only 1 or 2 trigger foods, but mine had over 15. Usually (90% of) kids outgrow it by age 3, however mine outgrew only a couple.
Common foods I’ve observed: Rice, wheat, egg, dairy, soy, nuts, beans, beef.
Everything changes when you become parents. FPIES adds another dimension to that change. Beginning parenting is already disorienting and frustrating. Parents go through the process of decrypting a specific baby’s messages, often communicated combinations of writhing, crying and screaming. Neither the parent nor the newborn knows what’s going on.
When it comes to FPIES in a newborn, no one knows what’s going on. There are layers of mystery and few signs to explain what a baby is experiencing. FPIES is a very new diagnosis with very limited medical studies and evolving research.
Parents, like us, take the newborn to the pediatrician and talk about signs of discomfort and inability to sleep more than 40 minutes.
- The initial diagnosis: Baby is getting acclimated to the world.
- Treatment: Deal with it.
- The next visit diganosis: Colic.
- Treatment: Deal with it.
- The next diagnosis: Acid reflux.
- Treatment: Medicine
- The next 1 to 3 visits’ diagnosis: Hmmm.
- Treatment: Deal with it
- The next visit: Baby demonstrates explosive diahreah, sustained vomiting, or other alarming symptom. Alternatively, you had spent a couple weeks on an elimination diet and the baby’s “colic/acid reflux” stops completely. You’ve also researched FPIES and mention that possibility.
- Diagnosis: FPIES, maybe.
- Treatment: Eliminate most common allergens (wheat, egg, soy, nuts), or if you’ve already eliminated everything, then keep it up and add more foods while still avoiding most common allergens.
Now that you’ve been diagnosed, my advice is to read bloggers and join groups of parents going through this. Collect ideas and information. We didn’t have much info when our first was diagnosed in 2007, so what got us through was wiping the kitchen clean of trigger foods and eating together to avoid those foods. By doing it together, we kept a healthy (actually, even healthier) diet and all have foods that we love without missing the trigger foods (at least not too much).