Hey allergy families!
Hope all is well in your worlds! We’re at the tail end of a virus over here, and enjoying warmer days, food passes all around, and meals as a family!
I recently shared on instagram (@chunkythighsandfpies) that we had begun food trials with Mr. Miles. We’re following a bit of a more relaxed protocol this time, due to his recent pass of dairy/soy formula and #secondchildsyndrome, so I wanted to share how we’re proceeding. I know many of you are navigating FPIES for the first time, and if either your own anxieties require a more rigid protocol, or your child is highly reactive and needs very strict trials, know that that’s perfectly okay. I did MUCH longer trials with Lincoln and kept much more detailed records. It’s what he needed, and it’s what I needed, and it was right for us at that time.
This time around, I’m following food guidelines given by CHOP (Children’s Hospital of Philadelphia) at our recent visit. We started with pumpkin, followed by apples, up next we’ll try almonds, parsnips, beets, white potatoes, and black beans. Possibly not exactly in that order! We are beginning with a half teaspoon the first day, increasing to a tablespoon the second day, and giving a whole serving the third day. I will be more diligent with some of the riskier trials, but I am not currently keeping records. My sole strict requirement for each new trial is at least three days of the new food where that is the only food served at a meal.
This is not medical advice or opinion, but here are a few questions that are important to consider when trialing food with your FPIES baby:
-Time of day: Ideally, trial well before any sleep periods. Trial at times where you could safely and somewhat easily make it to the ER if necessary. For us, that means trialing new foods first thing in the morning and keeping an especially close eye on Miles through his first nap of the day several hours later. On days when grandparents are watching him, or we’re going to ECFE, etc, we wait to trial until after his afternoon nap. We don’t trial within about 4 hours of bedtime.
-Amount: Many of you have asked why we start so small and work up to a full serving- does that actually help? I can’t say for sure, but it certainly seemed to temper reactions with Lincoln. His largest acute vomit-to-shock reaction was to a full bowl of rice cereal. His other reactions- lamb, blueberries, and cashews- were all much smaller amounts and much smaller reactions- easy to manage at home and didn’t lead to dehydration or an ER visit. The gradual increase in “dosage” may have allowed us to detect trigger foods without a full-blown reaction, which is better for everyone.
-Selecting Foods: While the best option is going to be working with a dietitian or gastroenterologist to guide your safe food choices, there are several charts available online of low/medium/high risk foods. We generally started with lower risk foods and move up the risk chart, but that included several exceptions- namely for allergy-risk reduction and convenience (soy is in EVERYTHING). This is the one our dietitian shared, and that we have followed most closely:
–When to Stop Trials: With Lincoln, as I mentioned above, I kept very particular notes about his diapers, time and amount of each trial, brand of food trialed, etc. It just about drove me crazy, particularly the diaper analysis. What I learned was that in all the cases my boys have faced so far, I’ll know if they are experiencing an FPIES reaction. Slightly off diapers are usually a virus, a medication, teething, etc. A tiny bump here or there on their skin has never turned out to be a reaction, even though I’ve lost a ton of sleep over them. Sleeping disturbances that are minor tend to be all the other things that keep mamas up at night, and have not, in our case, been food related. So, for my peace of mind and in order to help Miles catch up on eating solids as quickly as possible, I’m following the advice of our team at CHOP. Our gastroenterologist and dietitian agreed we should only stop trials for: extreme fussiness/sleep disturbance, visible blood in stool, or vomiting. And that’s how we’re proceeding! More confidence, less stress, phew.
If you’re facing the FPIES beast, I hope this gives you some guidance. I’m happy to share the log I used with Lincoln and anything else that might help you. All cases are so different and for many FPIES kiddos, this type of lax approach wouldn’t be the right one. So please, keep on doing what’s best for your family, and what your doctor has recommended. But if you’re finding the rigidity and very lengthy trials don’t seem necessary or effective for your little one, give yourself some grace to ease up, too. We’re all just doing the best we can for the tiny humans in our lives, after all!
I’d love to hear your thoughts and what works best for you as you trial foods. Come join the conversation on Instagram (@chunkythighsandfpies)! Wishing you warmth and food passes and happy days this week, friends!
Chunky Thighs & FPIES 