Because FPIES causes delayed food reactions, starting new food trials at a time that works for your family is something to consider. There are several ways that I’ve seen families schedule out their food trials, and there might be one or two ways that work better for you or your child than others.
There are a few things you might want to consider when you are planning to start a new food trial with FPIES. Time of day you start the trial, the length of time you have before a reaction normally starts, and your upcoming schedule are all things to take into consideration before jumping in. It helps to plan out new food trials for days or times when you are home and able to monitor potential reactions. There are definitely times when you can’t control the start of a trial and in those instances you might have to just hope for the best and try to be as prepared as possible. But, it helps to have a game plan when it comes to trialing new foods so that you don’t feel completely overwhelmed.
When should I start a new food trial?
Maybe you are just starting out on this FPIES journey and you already know how to trial foods, but you aren’t sure when you should be starting new trials (or when to start a re-trial of a previously failed food). The good news (and bad news) is there really isn’t one right answer. There may be several options that work well for you, or you may have to try several different methods before you find one that really works for your family.
- Time of Day
The first thing to think about is the time of day that you might be trialing a food. Some people choose to start their food trials early in the morning so that if their child were to have a reaction it would be during the day when they would be home to catch it and their child would be awake. This can also help minimize the risk of a child vomiting and aspirating on their vomit in their sleep. Others choose to start their food trials at dinner so that the reaction would happen overnight, while there are adults in the home who know how to handle the reaction.
We personally chose to do it this way because both my husband and I work, so we don’t try new foods in the morning or put any new foods in our childrens’ lunch boxes because we don’t want them to have a severe reaction at school. Part of this is to help out their teachers, and part of it is that I don’t fully trust anyone else to handle an emergency situation with my child like I would.
In our house, the kids rooms are close enough that we can hear what’s going on during the night, so if anyone wakes up crying or throwing up, I can get their beds in less than 5 seconds from my room. Trying new foods at dinner does make night time super long and sometimes full of screaming kids whose bellies hurt or who are throwing up, but if we ever need to go to the ER for a reaction, it also means that there is a second parent that is home already with our other child. If we were to trial foods during the day, having to pack up at a moment’s notice to go to the ER would mean probably having to bring a second child to the hospital as well, and that’s always something I like to avoid.
I’ll also say that most of our kids’ reactions these days are not acute reactions, and they don’t usually throw up anymore. Usually we just deal with lots of crying and maybe diarrhea if it’s a really bad trigger. If I still had a smaller baby with severe vomiting reactions, I probably wouldn’t trial foods at dinner, because I wouldn’t want to risk them throwing up and aspirating in their sleep. Again, you will have to figure out what works for your family, this will just give you some ideas.
- Day of the week
The next thing to think about is the day of the week that you might want to try new foods. Some families where one parent stays at home prefer to trial foods during the week, so that they aren’t fighting long wait times at the ER if they end up having to go to the emergency room, and so that it doesn’t interfere with plans they may have over the weekend or for traveling. Other families prefer to trial foods on the weekends because it means they will be home to monitor reactions and recovery. This can also mean less time out of school or work, especially for families with younger kids who may already spend most of their vacation and sick time managing doctor’s appointments and taking care of sick kids.
- Length of anticipated reaction
Another important thing to factor in when you’re considering starting a new food trial is the length of time you have before a reaction would normally start. If you already know going into it that your child has a 2-hour window before they start throwing up violently, you probably want to plan a food trial around times you will be home without other urgent plans.
Sometimes this can’t be avoided – you don’t always know when an FPIES trigger food will show up. I remember one time we were in the Toys R Us parking lot when my daughter had a massive, violent reaction. We were all covered in bodily fluids and her clothes were totally ruined. We stripped her down and washed her off as best we could with water bottles we had in the car, and I went straight into the store and bought her a complete new outfit. It was so bad we threw her old clothes away in a trash can outside! That was definitely a lesson for me about being prepared, and from that day on my car was stocked with all kinds of things most moms weren’t carting around with them!
How long should I wait between food trials?
There may be times in your FPIES journey where you go through a period of highs, where you find that your child seems to pass a lot of foods back to back, and then there may be times where you seem to fail one food after another. We had this happen a lot with my son, who was our second child with FPIES. I thought I had a handle on reactions and I knew what to do, but he was so different from my daughter in terms of his reaction patterns that we had to start totally from scratch several times. He would go for a month or two and do really well, passing foods that I wouldn’t have thought he would pass, and then he would get sick with an ear infection or catch a virus and it was like his body tanked. He would start failling every new food we tried, and there were many times where he lost safe foods during those periods. This was frustrating, and scary, and there were many days where I was afraid that he would lose his safe formula or end up with a feeding tube because he wasn’t able to tolerate food. He always seemed to pull out of it and would end up slowly gaining back some of the foods he had lost or gaining new safes altogether.
One thing I learned from this was that there seems to be a higher chance of passing foods if you can try them when your child is healthy, or when your child has been on a period of gut rest if there have been severe reactions in the past few days or weeks. There were several times when my son was under a year old that we would have to pull all of his food and only give formula for a few days. We did this on the recommendation of his gastroenterologist and nutritionist and they always had us adjust the amount of formula he was getting during that time so that he wasn’t losing any calories per day. This helped his gut rest until the inflammation could die down. Once we started to see symptoms disappear (his blistered rash would start to heal up, diarrhea would stop, and his reflux would get back under control) then we would begin reintroducing foods slowly, one at a time, until we could figure out if they were still safe.
Your child may not be in a position this extreme – it may be enough to just feed the foods you know are safe and put a pause on trying new foods for a week or two.
If you are an adult with FPIES, you will likely be able to manage your own symptoms and you won’t have to worry about cutting out all foods and adding them back in one at a time. It’s a little harder when you are dealing with a baby that can’t talk yet because you don’t generally know when something is making them sick until they start showing outward symptoms. Adults should be able to use their best judgment and keep track of how certain foods make them feel and avoid them accordingly.