Yesterday was a success. The 1 tsp of avocado stayed down, and he seemed to remember that he liked it so ate it much more willingly. I'm not sure if my brother and his girlfriend distracting him might have helped. Also, baby actually took some milk (1 oz) from the sippy cup with the help of my mom. I had to remind myself this is actually good progress.
We tried the sippy again this morning and it seems he does better with the sippy while sitting in the high chair - he took 2 out of 3 oz but some of that spilled. Also I have to remind myself the immediate goal is getting him to take something other than my breast so I can get those extra calories into him by (expressed breast milk or formula) supplementation.
My goal for today is to put aside my fear about a reaction to avocado (I'm considering it a lower risk since he'd had it previously without reaction) and actually leave the house (with my husband) to pick up some beef or lamb to prepare today to start his 4-3-4 beef trial tomorrow. I'm nervous because beef is a trigger for some FPIES children. I've been trying to think of a way to speed up the trials and started researching recommendations, but as mentioned by Dr. Scott Sicherer, there is no evidence-based FPIES food trial protocol (although he does suggest some practical considerations). In my reading, I find it depends on your little one's sensitivity thus far, your doctor's recommendations and your tolerance for ambiguity and vomit. I'm trying to keep in mind that most cases of FPIES to rice are resolved by age 3.
For us, we need to introduce new (iron-rich) foods quickly, but I also felt I needed to re-trial old foods since I had only done a 3-day trial initially. I read a great post talking about how one mom decided to do "messy" food re-trials and also had a strict protocol for high risk foods. (This mom was even brave enough to trial a whole recipe of new, but likely safe, foods all together in a chilli.) Although children with FPIES to rice are more likely to have multiple allergen triggers, at this point I'm not sure what to consider higher risk, because we aren't even trying rice, oats, chicken or legumes until after a year. Maybe, dairy, soy and grains? I did find this handy spreadsheet of mom-trials on the Our Slice of FPIES blog that could be used as guidance, given the dearth of scientific information available. This mom actually obtained and compiled the data herself through a food survey to other FPIES families. And this mom went through a thoughtful and detailed process of food selection.
The Children's Hospital of LA notes that some allergists may recommend starting a new food only once per week. That won't work for us, but it might if you have a lot of safe foods already established. FPIES UK suggests the new food be tried for 7 days, although they do note that trying a 5-2-2 (5 days new food, 2 days off, 2 days same food) can work too. And of course FPIES parents all do it a different way, although there is some wisdom in not going too slowly and a suggestion from other FPIES moms out there that a 5-3-3 might work, though that might not change the total number of days dedicated to the trial. Some parents even make an awesome form that auto-populates a Google spreadsheet so they can easily see patterns. This same family used to trial for 14 days, but later adapted their method to get through more foods more quickly and smartly pairing a higher risk food with a lower risk one to take advantage of the break period.
I'll update if/when we decide to alter our 4-3-4 plan.
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