The Ins and Outs of Food Trials
Once you've done all of your research and are more comfortable with the FPIES diagnosis, the next question is "what foods do we trial, and how do we trial them?" Some families choose to hold off until after their child's first birthday to trial foods in the hopes that their digestive tract will be more mature and less likely to react to food proteins. We've put a lot of thought into this, because Matthew hopefully won't be our last child. We know 20+ families with multiple FPIES children through online support groups, so we approach our next pregnancy with an "expect the worst and hope for the best" mentality with respect to FPIES. Based on our experiences with Matthew we feel like waiting is not beneficial in avoiding triggers, or to the mental health of a breastfeeding Mommy (of course, this is just my personal opinion, and each parent has to do what they feel is best for their child). Three of Matthew's five food failures occurred after he turned one. Add that to Matthew's history of oral aversions (which led to occupational therapy), and the stress of round the clock feedings when a one year old has no safe solid foods, and you have the reasons behind our decision to trial foods before the age of one.
So, regardless of when you start trialing, you have to pick a food. The UpToDate article on FPIES by Alan M. Lake, MD lists "grains (rice, oats, barley), meant and poultry (beef, chicken, turkey), vegetables and fruit (sweet potato, squash, string beans, banana), legumes (peas, lentils), and fish" as more likely triggers for children with FPIES. But every child is different, and each FPIES child reacts to a different set of foods. Though these are more likely according to the handful of studies addressing FPIES, your child may not react to these foods. A good place to start when choosing foods is to look at the food survey. It has the trigger/safe information on over 280 children with FPIES. Choose foods with higher percentages of passes, and once you have a few safes (or triggers) under your belt you can download the raw data and sort it by your child's foods. Look at the foods of children with the same triggers or safes as your child, and choose foods with a high pass percentage among those children.
Another thing to keep in mind is nutritional value. Food trials are slow and tedious. If you are reading this and have a seven month old, the best case scenario will get you ten safe foods by the time your child is one. And that's not factoring in pauses for illness, teething, or breaks after a fail to get your child back to baseline. I know you're probably thinking "ten foods...that's it?" While writing this, I'm thinking "ten foods by the age of one would be amazing!" Matthew had twenty safe foods at the age of two. He only had three when he turned one due to fails and food aversions. In the FPIES world we're all turtles...slow and steady wins the race. So choosing nutrient rich foods is really important, because with so few foods you really want as much "bang for your buck" as you can get. Foods like avocado, quinoa, swiss chard, and spinach were among our first choices (Matthew's food list is in the order we trialed with the first at the top, in case you're curious about the foods we chose). Fruits were definitely further down on our list...mostly because we didn't want Matthew to eat sweet foods out of fear that he would then reject any food that was not sweet, which would make trialing even harder.
Once you choose the foods you want to trial, here's how you do it (disclaimer: I am not a medical professional, and these are just tips I have picked up from my son's doctors and the experience of other FPIES families I have spoken with). First, is your child a delayed reactor? Some FPIES children react the first time they ingest a food. Others (like Matthew) do not react until days into ingesting the offending protein. Matthew's first food fails (rice and then peas) occurred on the fourth and fifth day he ingested them. Food trials last two weeks for early reactors, or three weeks for delayed reactors. We also build a three day "break" into our food trials. We don't trial foods while we're out of town, and four of Matthew's food fails occurred on his first ingestion after not eating the food for a few days when we were travelling. We noticed the pattern, and there seem to be observations among the medical community to back up our "break" theory, which are noted in the UpToDate article on FPIES: "The disease presents in two phases: the initial presentation is that of a chronic disease while the antigen is being ingested. This can be followed by an acute phase if the antigen is removed from the diet and subsequently re-ingested, with symptoms occurring about two hours after ingestion." Chronic refers to symptoms like mucus or blood in the stool, diarrhea, eczema, and irritability (among others). Acute refers to a repetitive vomiting episode, possibly leading to lethargy and shock, followed by diarrhea. So, for us, we do not call a food safe until after it is re-ingested after a three day break. Not all families add in the break, but we are definitely not the only ones who have noticed this pattern and decided to add breaks into their trials.
Now that you know what you're trialing and how long to trial it's time to start the trial! Take a deep breath...I know you're going to be a nervous wreck and it's super-scary. You're hoping this food is safe, but terrified that it's going to make your baby sick. The only way to know is to trial it. You have a plan, you've picked what you hope is the safest choice...you can do this, so stay strong. Start with one teaspoon on the first day, and increase the amount by one teaspoon each day until you reach two tablespoons (six teaspoons). Then hold steady at this amount until the end of the trial. The two tablespoon amount is equal to half of a "first foods" container, and was about the limit of what my kids could handle during a feeding when they were 6-8 months old. If your child absolutely loves the food you can give them more, especially as they get older.
I know I'm a little wordy, so here's a synopsis just in case I lost you in there. When Matthew trials a food he ingests it one time a day for three weeks straight. He starts with 1 tsp on the first day, and increases by 1 tsp each day for the first six days, then holds steady at 2 Tbsp for the rest of the trial. Once he ingests the food for three weeks he takes a break and does not ingest the food for three days. On the fourth day he eats the food again, and as long as he is symptom free we call it a pass and add the food to our safe list. I hope this helps clear up some of the mystery surrounding food trials, and I wish you luck!
So, regardless of when you start trialing, you have to pick a food. The UpToDate article on FPIES by Alan M. Lake, MD lists "grains (rice, oats, barley), meant and poultry (beef, chicken, turkey), vegetables and fruit (sweet potato, squash, string beans, banana), legumes (peas, lentils), and fish" as more likely triggers for children with FPIES. But every child is different, and each FPIES child reacts to a different set of foods. Though these are more likely according to the handful of studies addressing FPIES, your child may not react to these foods. A good place to start when choosing foods is to look at the food survey. It has the trigger/safe information on over 280 children with FPIES. Choose foods with higher percentages of passes, and once you have a few safes (or triggers) under your belt you can download the raw data and sort it by your child's foods. Look at the foods of children with the same triggers or safes as your child, and choose foods with a high pass percentage among those children.
Another thing to keep in mind is nutritional value. Food trials are slow and tedious. If you are reading this and have a seven month old, the best case scenario will get you ten safe foods by the time your child is one. And that's not factoring in pauses for illness, teething, or breaks after a fail to get your child back to baseline. I know you're probably thinking "ten foods...that's it?" While writing this, I'm thinking "ten foods by the age of one would be amazing!" Matthew had twenty safe foods at the age of two. He only had three when he turned one due to fails and food aversions. In the FPIES world we're all turtles...slow and steady wins the race. So choosing nutrient rich foods is really important, because with so few foods you really want as much "bang for your buck" as you can get. Foods like avocado, quinoa, swiss chard, and spinach were among our first choices (Matthew's food list is in the order we trialed with the first at the top, in case you're curious about the foods we chose). Fruits were definitely further down on our list...mostly because we didn't want Matthew to eat sweet foods out of fear that he would then reject any food that was not sweet, which would make trialing even harder.
Once you choose the foods you want to trial, here's how you do it (disclaimer: I am not a medical professional, and these are just tips I have picked up from my son's doctors and the experience of other FPIES families I have spoken with). First, is your child a delayed reactor? Some FPIES children react the first time they ingest a food. Others (like Matthew) do not react until days into ingesting the offending protein. Matthew's first food fails (rice and then peas) occurred on the fourth and fifth day he ingested them. Food trials last two weeks for early reactors, or three weeks for delayed reactors. We also build a three day "break" into our food trials. We don't trial foods while we're out of town, and four of Matthew's food fails occurred on his first ingestion after not eating the food for a few days when we were travelling. We noticed the pattern, and there seem to be observations among the medical community to back up our "break" theory, which are noted in the UpToDate article on FPIES: "The disease presents in two phases: the initial presentation is that of a chronic disease while the antigen is being ingested. This can be followed by an acute phase if the antigen is removed from the diet and subsequently re-ingested, with symptoms occurring about two hours after ingestion." Chronic refers to symptoms like mucus or blood in the stool, diarrhea, eczema, and irritability (among others). Acute refers to a repetitive vomiting episode, possibly leading to lethargy and shock, followed by diarrhea. So, for us, we do not call a food safe until after it is re-ingested after a three day break. Not all families add in the break, but we are definitely not the only ones who have noticed this pattern and decided to add breaks into their trials.
Now that you know what you're trialing and how long to trial it's time to start the trial! Take a deep breath...I know you're going to be a nervous wreck and it's super-scary. You're hoping this food is safe, but terrified that it's going to make your baby sick. The only way to know is to trial it. You have a plan, you've picked what you hope is the safest choice...you can do this, so stay strong. Start with one teaspoon on the first day, and increase the amount by one teaspoon each day until you reach two tablespoons (six teaspoons). Then hold steady at this amount until the end of the trial. The two tablespoon amount is equal to half of a "first foods" container, and was about the limit of what my kids could handle during a feeding when they were 6-8 months old. If your child absolutely loves the food you can give them more, especially as they get older.
I know I'm a little wordy, so here's a synopsis just in case I lost you in there. When Matthew trials a food he ingests it one time a day for three weeks straight. He starts with 1 tsp on the first day, and increases by 1 tsp each day for the first six days, then holds steady at 2 Tbsp for the rest of the trial. Once he ingests the food for three weeks he takes a break and does not ingest the food for three days. On the fourth day he eats the food again, and as long as he is symptom free we call it a pass and add the food to our safe list. I hope this helps clear up some of the mystery surrounding food trials, and I wish you luck!
