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. 

Quinoa

We started a quinoa trial on Sunday.  We used the flakes and it ended up looking somewhat like oatmeal, but didn't smell/taste very good.  We decided to mix it with her pears and she gobbled it down and cried when it was gone!!  =)  It's so great to see her eating, but at the same time, it's frightening.  I'm so scared of a reaction. So many questions run through my mind for the next 2-3 hours...what if it's a full-blown reaction and she ends up in the ER?  What if she is in agonizing pain for hours?  What if she fails this and she has to go the next 2-3 weeks trying to heal her poor little gut?  On the other hand, I have other thoughts going through my head as well...what can I create with this food?  Can I make her some sort of finger food? Can I bake anything?  What about a birthday cake or a muffin? A bread? A treat? 
Sunday went very well, as did Monday.  Tuesday I got a call from daycare saying she just wasn't herself--no smiles, laughs, babbling...just pretty much "there".  She also had two questionable diapers; soaking through her onesie, pants, crib sheet, mattress pad....

Last night she didn't sleep well at all. She wasn't screaming in pain all night, but she was just restless and...well...awake.  And sleep disruption is definitely a symptom of a reaction.  We didn't give her the quinoa last night.  I got a call from daycare again today that she has had a couple more questionable diapers.  UGH.  I had such high hopes (again) for this trial--we would have been able to bake, have a cereal for breakfast etc.

So is this the start of a fail? Do we try again tonight? Maybe she's teething.  Maybe she's catching a bug.  Maybe maybe maybe.  It's so hard to decide if we press on with the trial or give up on quinoa.  It's all a guessing game with FPIES.  I don't think she's been in real pain yet, but I also don't want to push it too far and cause the pain.  UGH AGAIN!