I have shared that Sweet P is likely dealing with FPIES. But, for most of you (like it was for me before), this is a strange acronym with which no one is very familiar. This is because it's only recently begun to be recognized and diagnosed more. Before October 1st, it didn't even have an official insurance code!
FPIES stands for "Food Protein Intolerance Entercolitis Syndrome." The basic definition is that it's a type of food allergy that affects the gastrointestinal (GI) tract. Symptoms include vomiting, diarrhea, constipation, or even lethargy. What this means is that when certain proteins from certain foods are introduced to your child, the GI system rejects them and the body has an allergic reaction. However, instead of the usual allergic reaction people think of, like rashes, hives, difficulty breathing, etc., the body reacts through the digestive system.
The way our allergist described it to me (in the most basic way I'm sure) it is that we have an immune system for our body, and a separate immune system for our digestive system. Instead of the body's immune system identifying a food as an attack against the body, the immune system of the gut identifies the threat and therefore tries to rid the body of the 'threat' through vomiting, diarrhea, etc.
What makes it so difficult to diagnose FPIES is that there is no actual test that can determine what foods the child will not react well to. With typical IGE allergies, there are blood tests and skin patch tests that can be done, but these tests do nothing to predict or identify which foods a child will have an FPIES reaction to. The only way to tell if a child with FPIES will react negatively is to actually trial the food over the course of several days to see if there is a negative response from the digestive system. For many kids the reaction is quick and severe, with vomiting to shock episodes within 2-3 hours after consuming the food. I'm so grateful we haven't had that experience as it sounds so scary! We did discover at 3 months that one of Sweet P's trigger foods is dairy, but her symptoms were reflux, colic-like screaming and poor sleep. Her only other symptom so far has been diarrhea.
Both our pediatrician and allergist think that based on her exposure to food and the following symptoms she likely has FPIES, but haven't officially given us the diagnosis, since there is no official test to give and thankfully so far, even though she doesn't really have "safe" foods, her reactions have not been severe.
Unfortunately, the most common FPIES trigger foods are typical first foods! Dairy and soy (the main formula ingredients of course) top the list, followed by barley, rice, oats, peas, green beans, sweet potatoes, and squash. But, just because those are the most common doesn't mean that kids can't react to other foods as well. Sweet P ended up having issues with carrots and apples, two of the 'safest' foods for FPIES kids, so when a parent suspects that their child has FPIES, they will need to try each food slowly to be sure the food is tolerated well before adding new foods to their child's diet.
The symptoms and reactions are generally divided into two different categories, acute or chronic. Children with chronic FPIES symptoms usually have a hard time gaining weight and are lethargic babies, which can be extra stressful as you're trying to figure out what you can safely feed your baby. Vomiting, diarrhea, and other immediate gut responses would be included in the acute category. Although kids often have just one or the other reaction to a negative trigger food, some kids can have both. The only treatment for FPIES at this point is avoidance of trigger foods. Most children with FPIES just have a handful of foods that they can't tolerate, but some kids can't seem to handle any solid food, and this includes our Sweet P.
Oftentimes parents don't realize their child is reacting poorly to foods until they try it in a solid form, but some babies are even sensitive to foods introduced through breastmilk. We are grateful that so far Sweet P has been able to take donated breastmilk as long as the donor is dairy free. I know it must be a difficult road for mothers who want to breastfeed and just can't seem to figure out what trigger foods are bothering their little ones. Oftentimes the baby ends up on hypo-allergenic or elemental formula because it becomes too difficult to determine which foods are causing the baby discomfort. In our case, Sweet P tolerated Alimentum just fine, which is a hypo-allergenic formula that is very expensive and can still be found in grocery stores (similar in content to Enfamil's Nutramigen). If the baby still reacts to these formulas, they can end up on elemental formulas like Elecare or Neocate. These elemental formulas are as broken down as possible and are made up of amino acids for easiest digestibility, but are even more expensive and are generally not as easily accessible.
Thankfully, most children grow out of FPIES. Usually by age 2 or 3 kids can tolerate foods that previously made them sick. However, that's not always the case. I am in a couple of online support groups for moms of FPIES kids and there are several moms of 4, 5 and 6 year olds who still have zero, or just a handful of safe foods. This means the majority, or all, of their nutrition comes from elemental toddler formulas, while they continue to wait for their children to grow out of it.
In retrospect, I think the buddy had a FPIES reaction to eggs, as after just a couple of tries with eggs and a very scary vomiting episode around 9 months old we avoided eggs like the plague until he was 2. We tried them again in muffins to start and by that point he had grown out of it. I remember it was a pain to be sure that there was never any eggs in any of the foods we offered him for over a year. And that was only one food!
I hope and pray that Sweet P also grows out of this as well, especially since at this point she has yet to tolerate solid food well.
If you are interested to learn more about FPIES some great resources are The FPIES Foundation and the International FPIES Association.