My daughter is 8 months old and was diagnosed at 6 months. I am trying to find foods that are completely safe to try without having worry of a reaction. Our allergist gave us a list of “safe foods” and I’m not fully convinced that they are safe. I am in a Facebook group for moms with kids of FPIES and all the reactions seem to be foods that are on our safe list. Our safes so far are sweet potatoes, rice cereal, breastmilk( I also haven’t had to restrict my diet since she doesn’t have any reactions after nursing) and possibly pumpkin. I am trying to transition to Neocate but we have had zero luck with her accepting it. We have tried everything from mixing with breastmilk to adding bakers vanilla, powdered sugar, heating temperatures, having someone other than me feed etc. Our only serious reaction happened at 6 weeks from Similac sensitive formula and I am so nervous so I haven’t been super proactive with trying new foods. I am just feeling lost and full of anxiety thinking on what to try next.
Huge hugs! I remember how frustrating it was in those beginning days and my heart goes out to you. Though there are some foods that are considered "common triggers," there is really no definitive list of guaranteed safes and guaranteed "unsafes"--- it can very from kid to kid and food to food. Clear as mud, right?! Unfortunately, that is what we are stuck with for now. So really, your best bet is to go slowly and deliberately, trialing one food/ingredient at a time and recording your little one's response in a food journal. Food journals don't have to be long or elaborate, but providing a snapshot of the child's response to a new food each day, along with the time fed and amount given, can be enormously helpful to both you AND the medical team. In addition, go with your gut. You know your little one best--- you know what her "baseline" looks like (baseline is what your child is like when not experiencing sickness, reactions, etc). She is really going to be your best guide to pair with your record keeping in the food journal. That is encouraging that she already has safes at 8 months old, and actually, you could create finger foods for her with those safes as well, as she gets older and may seek out new textures and variety. I am sure others will weigh in as well, but please know you are not alone, you are the expert on your daughter, and you CAN do this! Huge hugs and hoping that she is on to good outcomes for food trials ahead! Also, link to info about food journals : http://fpiesfoundation.org/toolboxfood-journal/ Some other good links:
I completely understand your situation. I've looked at many food lists for FPIES kiddos looking for ideas, and they all seem completely different. Every child is unique- it really is all about food trialing very carefully. I found it best to avoid the common triggers as most of them were a problem for my son, but that isn't always true either (My son can tolerate peas which is on that list. And it looks like your daughter can tolerate rice and sweet potatoes.).
I can speak personally about your formula dilemma. Have you tried Elecare? It is an elemental formula similar to Neocate, but tastes better. Some FPIES kiddos found success with it.
My son happens to react to Elecare, so we had the Neocate battle as you described (mixed it with everything including breastmilk) and complete refusal to drink it- We tried for 2-3 months and then we gave up. At one year of age, your child can try Neocate Splash. My son LOVED it and tolerated it! : ) (We actually didn't discover this option until my son was 3- I breastfed that long. Our dietitians were and continue to be unhelpful.)
Don't worry about being proactive about trialing foods. We made that mistake and did too many food trials early on- My son just ended up being sick a lot. We currently trial about once a month and/or easy trials when busy (different way of cooking the same food). We only do high risk trials in the summer, since viruses mess with everything. We are all much happier as a result.
Hope that offered you some practical advice. Best wishes!
I am so sorry you are going through this! We had similar frustrations with our eldest and first fpies diagnosis. I agree with others that there aren’t any “safe” foods except those that are safe for your particular child. I will also add (and if anyone has read my other replies they are probably sick of reading this) that our allergist by our second child told me that if breastfeeding was going successfully and I was able to keep up with his milk intake while I was at work and he was at daycare, that I could completely let go of worrying about solid foods. That, for me, eased the pressure and anxiety around food trials substantially. We did not have the formula issue you are describing but I’m hopeful that you find a solution and if so that this more laid back timeline of solid food introduction helps ease your mind a bit. Our pediatrician still made me anxious every time by asking about how much solid food my eldest two ate but after our allergist gave me that gift of a relaxed timeline I just kept reminding myself that he, not our pediatrician, was the one that knew the most about fpies and was in charge of the food introductions (as much as any allergist can be with fpies...).