We get asked questions about food trials a lot. Since most people are not familiar with FPIES, it is not surprising there are many questions. Of course, before her diagnosis, I knew nothing about it either. Thankfully, I/we have been able to learn a lot in the past few months!
Since there is no blood/skin test for FPIES like there is for IgE (traditional) allergies, it all has to be done by trial and error. So far, Myra's most noticeable symptoms have been vomiting and sleep disturbance (PS-I hate calling it that because it's such a nice little way to describe the HORRIFIC MISERY-for real- that happened in two different installments before connecting the dots to FPIES), our trials are focused on those two symptoms. We do look for other things like rashes, gas (like bad, painful, room clearing gas), other pain symptoms (banging her head on her crib, forceful scratching of her face, etc.), but those are usually secondary to the first two symptoms. Remember, FPIES=Food Protein Induced Enterocolitis Syndrome, so the pain she has is, as far as we know, the same as a colitis flare up, but in her entire digestive tract. I know people with colitis and thinking about my tiny kiddo suffering through that same pain makes me so sad! Click here for more info about her symptoms.
We created our trial system ourselves after talking with Myra's allergist and some other FPIES parents I trust. Just like with any other topic, there is a lot of information on the internet, some of it good, some of it bad, some that fits with your priorities and values, some that doesn't. So, based on the information we gathered and Myra's symptoms specifically, we created what we think will work best for us. The overall timeline of two weeks and starting in the morning at first was suggested by her allergist and we took it from there. Thankfully we have had more passes than fails (almost all passes, only fails have been "questionable" and nothing "major") since starting official FPIES food trials, but once we have a better idea of what her fail pattern looks like, we will hopefully be able to shorten the trial a bit. For now, we are playing it safe. It's working and we're chugging right along, so we're fine with it being a bit on the long side (two weeks when we could maybe get away with one week).
For those of you who get lost in my ramblings, the main points of the trial are: start on a day we are best able to monitor her for a few days, start small and gradually increase, start in the morning, take a break in the trial, make it long enough to hopefully see both acute (vomiting, diarrhea) and chronic reactions (things like sleep disturbance/pain).
Myra goes to daycare once per week on Wednesdays. So, we always start trials on Thursdays. That gives me/us the most time to be with her 24/7 at the beginning of a trial to see how she is doing. If for some reason we can't start a trial on a Thursday (illness, plans that might really throw her off and confuse symptoms, etc.), we wait until the next Thursday. Better safe than sorry! Especially after our very confusing sickness after her very first day at daycare.
On day one, we give her a very small amount of the new food, the equivalent of about 1 teaspoon, right away in the morning. FPIES is a delayed reaction allergy of the gut, meaning the acute reactions (vomiting for Myra) don't happen for 2+ hours (usually about 6 hours for us) after ingestion. If a reaction is going to happen, we would rather it happen in the early afternoon than the middle of the night. On at least one occasion (pre-diagnosis), Myra was vomiting in her crib for who knows how long before we realized it-it was smelly and disgusting and we felt terrible for her. So, on day one of blueberries, I just gave her 2-3 blueberries. For potatoes, 2 baby spoonfuls of her safe mashed potatoes recipe. The rest of the day, she just gets safe foods and her formula. Day two: about 2 teaspoons in the morning. Day three: about 3 teaspoons in the morning. If there are no major concerns in the first few days, we start to get a little more liberal with the amounts. For us, during those first few days we are mostly watching for vomiting. It is unlikely we would notice the sleep issues so early as the chronic reactions tend to take a bit more time to build up. And, of course, the vomiting could happen at anytime during the trial, not just right away, but we want to increase the amounts in such a way that would actually show us those chronic reactions at some point during the trial. Anyway, on day four, we will usually just let her have as much as she would like in the morning (within reason, she would have eaten a whole container of blueberries if I let her!). If that goes okay, we add a little bit with lunch for a couple days. If there are no big concerns by day 6-7, we give her as much as we can for breakfast, lunch, and supper. [If we end up with a vomiting reaction fail at some point, we will definitely reevaluate our trial set up based on when the vomiting occurred.]
Curveball, some babies do fine on a food as long as they are fed that food consistently. If they take a break from it, they may have a reaction upon reintroduction. Not a big deal when they're only eating four foods anyway, but once they more safe foods (hooray!) it's impossible to feed them all of their safe foods every day or two. So, we made that a part of our food trial. Day 8-10 is a break from the trial food and she just gets her safe foods. On day 11, we start the food again, but only in the morning. We aren't quite so conservative with the amount, but still try to keep it pretty small that first day after the break. If day 11 goes fine, we're just go big for days 12-14 in hopes we're in the clear for the barfing and just hoping to see if she's having pain (presumably the cause for the sleep disturbance).
If all goes well after day 14, we call it a pass and start over with another food the next day! For the time being, we will be constantly trialing foods unless we have a good reason not to do so since her diet is so limited.
Curveball number two: making sure Myra actually eats the food. So far that hasn't been terribly difficult, but our current trial (pork) started out a little tricky. I cooked ham steak in the crock pot with a can of peaches. Day one went fine, but day two she was not interested. With all this drama surrounding food, we try so hard to make eating fun, because it should be fun. However, during a trial I need to make sure she actually eats enough of the food for it to count. Myra has recently decided she is too cool for pureed food, so hiding stuff has become a little more challenging if she won't just eat it plain. When she wouldn't eat the pork, I pureed it with peaches-refused. I made it into a smoothie with a TON of blueberries and I think she ate enough for it to count, but I knew we'd have to try something different the next day. She loves her crunchy CheeChas and freeze dried peaches and blueberries, so we decided to switch to bacon (still pork). She wasn't so sure at first, but by today (day 3 of bacon, day 5 of pork in general) she was having fun with it. She ate some on her own at first, then wanted to feed it to me. So we took turns feeding each other bacon (sometimes being an FPIES mama is HARD, but sometimes you get to have a baby feed you bacon!) and she HAD FUN EATING! We all take things for granted every day, myself included, but watching my baby (toddler, I guess...) enjoy eating new foods is not one of those things. Fingers crossed for another successful food trial!
As for how we keep track of all of this, I made a Google form about a month ago. We can access it from any computer and have a shortcut for it on both of our phones and my iPad. We fill it out throughout the day with the following information: how many times she woke the night prior (frequent night wakings as one of the chronic symptoms), which day of the current food trial it is, how long her nap was (short/no naps=same idea with the sleep disturbance), how many ounces of formula she drank (need this for WIC/insurance to get formula covered), what she ate (obviously most important for the food being trialed, but eventually we will meet with a nutritionist who will want to get a good picture of her general diet and, graphic: helps us pinpoint if food is going through her system too quickly=diarrhea/digestion problems), description of her bowel movements (oh, joy), meds given/dose (if we're suspecting teething causing symptoms or to see if she's reacting to a medicine), height/weight when checked, temperature when checked, noting any vomiting, diarrhea, face scratching, hiccups (some people say they notice those with fails, not here so far), whining/crying out during sleep, audible farts (they're loud and not normal!). We also have a box for when we open a new can of formula (so we can see how long they last us) and a section for general notes. Then Google puts it all onto a nice spreadsheet for us (TREVOR LOVES SPREADSHEETS! It's a sickness.) so we can access it if/when we need it. It sounds intense, but it really takes about 10 seconds after a diaper change/nap/whatever to quickly enter it and hit submit. We used to have a notebook that went everywhere with us, but that got old quickly and, honestly, we only need to look at this if we're trying to figure out a fail pattern, making sense of an illness (the temp tracking has been helpful when Myra was sick a few weeks ago), or "reporting" her formula intake to WIC/insurance. Out of sight, out of mind, less clutter.
For those of you reading this and thinking, "holy cow. that is nuts. I couldn't pay that much attention to food amounts, symptoms, everything." You're right, it is nuts. Doing all this and being paranoid any time food is around makes me feel like a crazy helicopter mom, but we have no choice. The alternative is messing with Myra's health, lost sleep for all of us, major stress for all of us, confusion (did she get a crumb somewhere? was is it the pork?), not worth it.
I hope that helps make sense of our crazy food trials! Fingers crossed we don't have any fails, but if we do, I will be sure to update with how that affects our trials. Because failure is still progress, right? ;)