The Unknown and the What ifs of FPIES

I have always feared the unknown.  Anyone who knows me well, also knows that I hate the what ifs.  No matter what the situation is, I am always thinking about all the possible what ifs.  The unknowns and the what ifs of FPIES are extremely overwhelming.  I find myself thinking about B and her FPIES nearly all day long, every single day.  I'm always questioning what if this happens, what would happen if we try this, what should we trial next if she fails this food etc. 

I've recently (well, pretty much every day, lol) been talking to a couple of my FPIES mentors, and have come to a new question.  Do we even know what Brynn's TRUE baseline looks like?  I think she's the only FPIES baby that I've heard of that isn't on some sort of elemental formula.  When we trialed corn (kix cereal), we saw reactions within a couple hours and didn't push the trial any further.  I was so afraid that if we did, she would become sensitized to the corn and start reacting to the trace amounts that are in her current formula.  There is a formula out there (Similac Expert Care Alimentum Ready-to-feed) that does not contain ANY corn and we are now considering trying it.    Another FPIES mom mentioned that it's possible for her to have some underlying inflammation that is keeping her from being able to tolerate food trials--maybe that's why we are having all the fails?  I mentioned to her that even though she's probably not hungry, her bottle is the only thing that settles her sometimes and she said her son did the same thing and she learned that it was from the inflammation (the formula gives a temporary coating of her intestines). 

Back-tracking a little--we began a mango trial this past week. I chose mangos because I haven't heard of other's little ones that have reacted to them.  Her tastebuds appear to really like them...but, unfortunately, I'm not so sure her gut does.  (Insert huge SIGH here).  She's had disrupted sleep, a couple screaming fits, a questionable diaper and crabbiness today, and she was spitting up all day, which is something she very very rarely does.  We took a break from them today and I'm not sure if we will continue with them or not.  What if we give them to her tomorrow and it causes an extreme amount of pain??  UGH.  I am learning as we go here, but one thing I have already learned, is that there are an extreme amount of unknowns and what ifs with FPIES.  Not only do I want to become as knowledgable as possible for my little girl, but also for future families who have to endure this.