Chronic vs. Acute FPIES symptoms

So far, we've experienced clear acute FPIES symptoms: delayed vomiting, diarrhea, and sleepiness (not sure if it's lethargy, yet). There are actually a range of chronic FPIES symptoms, from hiccups, eczema, rash, diarrhea, stools with mucous or blood, reflux, vomiting, vomiting bile, shock etc, which parents can track using a symptom tracker. I also came across this chart, which lists reflux/congestion, diarrhea/constipation, eczema/rash, yeast anal rash, foul mucous stool, foul gas stool, choking/gagging, irritability/clingy behaviour, nightwaking/crying/abdominal pain, bloody stool, and regurgitation. The acute symptoms on this chart are immediate vomit/diarrhea, delayed vomit, profuse vomit/lethargy/shock.

Some will say they also notice behavioural changes such as clinginess and sleep disturbances, often associated with chronic FPIES. Since I'm a first time mom, I have no idea how to tell if Matthew's poor sleep is FPIES-related or not. Nor do I know how solid solid-food poop is supposed to be. Is some constipation par for the course or do I note it as a symptom?

So far, I've mentioned what FPIES families will state as chronic vs. acute FPIES reactions. If you want the clinical difference between acute vs. chronic FPIES, this chart from the FPIES Foundation helps to explain.

In addition, I will mention that chronic symptoms have yet to be fully described in the literature although IAFFPE makes some efforts here and here where they also comment on how the understanding of chronic FPIES is still evolving. (The International Association for Food Protein Entercolitis (IAFFPE) has changed it's name more recently to the International FPIES Association, or I-FPIES.)

Today we started our beef food trial, just 1/2 a teaspoon. Since I can't mix it with other food, I knew the taste would be strong and he definitely didn't like it. I'm on the lookout for chronic symptoms, but I have no way to know if he was especially cranky tonight at bedtime due to his tummy troubles, or over-tiredness or teething or...you get the idea. This is like a puzzle where the pieces keep changing.

My husband went out and bought another type of sippy last night, but all he does is bite that one. It took me 15 minutes and quite a bit of spillage to feed him 1 oz of expressed breast milk via his sippy cup today. I can't wait for him to learn that he can hold it, and that he has to tip it, and that he can control the flow of liquid. Today's small victory, he did grab the handles and put the spout in his mouth a couple of times.