Some children with FPIES who have experienced acute and/or chronic reactions over a long period of time learn that food has caused them pain and subsequently lose interest in eating solid foods. Other children with FPIES may have had limited exposure to textures and chewing/swallowing at the developmentally appropriate age, leading to oral aversions and feeding challenges.
As a parent or caregiver, how can you take steps to create a positive association with food and a healthy outlook towards trialing new foods? Parents who have been through some of these challenges have generously shared their tips with I-FPIES:
Aim for inclusion. Regardless of how limited your child's diet may be, it is important to keep your child exposed to food and eating. Your child will benefit from seeing that food is an everyday part of life. Start from the beginning by including your child at mealtimes even if all he can eat is a bowl of crushed ice or a safe fruit or vegetable prepared several different ways. Your initial instincts may be to resist eating your own food around your child, especially if he is old enough to understand that his food is different. Explain to your child as early as you can that he has his safe foods and you have yours in the same way that some individuals prefer apples to oranges. Communicate early and often using simple terms that your child will understand (for example, "This food made you very sick when you ate it, so you are eating that safe food that won't hurt your belly").
Make the kitchen an FPIES-friendly place. If you have an curious toddler who is exploring the kitchen cabinets, create a cabinet just for him at his level of reach. Clear out any items and replace with kid-sized pots and pans and pretend food. As safe foods are added to your child's diet, add any safe snack foods to her cabinet so she knows she has a place to go for her own food. Having that choice and independence of opening a cabinet and reaching for a safe snack can be a proud moment for a toddler on a very limited diet.
You may be tempted to make the refrigerator off-limits, but if you have an interested toddler, you can use the refrigerator as a place to learn about foods instead of fearing them. Consider removing unsafe foods from shelves that are at a reachable distance. Replace with play foods. She can learn the names and appearances of different foods even if she can't eat them all yet. You can put plastic produce in the produce bin and pretend syrups and ketchups and sauces on a shelf. Teach boundaries by explaining that she can "cook" with her play foods in the fridge and shouldn't touch other foods that are not safe yet.
Depending on your child's age, allow her to help with cooking and baking using her safe ingredients. Kids love to pull up a stool, grab a bowl and mix ingredients. You may even be able to come up with a new recipe idea together. It's worth the effort and mess to see your child smiling and enjoying a typical kid moment of mixing and tasting a new creation.
Empower older siblings to help support their younger brother or sister. If you communicate early and often, even a three-year-old sibling can learn not to share unsafe foods. Consider using placements at the table at mealtime. Placemats create a visual reminder and easy way for all children in the family to learn to keep their food on their mat and not allow crumbs to reach your FPIES child's plate. Explain to older siblings that part of their role is to help their mom and dad protect their brother/sister. Teach them what foods are safe and unsafe. They will feel proud serving as the expert to visitors and guests if asked what their little brother/sister is allowed to eat and where to find the safe foods.
When it comes to trialing new foods, older siblings can be the greatest motivators to encourage your child to try something new. Leverage them to help teach chewing and swallowing skills and show your FPIES child how good a food tastes and how much they enjoy it. Consider trialing some of the foods that your other children eat frequently, with the goal of getting your FPIES child's plate to eventually look the same or similar to the rest of the family. Use plates and cups of the same color and size to create the appearance of sameness at mealtimes as well.
Focus on the "can". Choose positive language when talking to your child about foods. Communicate frequently and explain, "These are the safe foods you can have. We're going to try a new food every day for a week or two until we know it's safe for your body. Then we'll add it to the list of foods you can have." A child who hears repeatedly "you can't have this food or that food" may begin to wonder if he has done something wrong to not be allowed the same foods as others. Focusing on the CAN vs. the CAN'T helps your child to learn that his food allergies are not his fault. You can also teach older siblings to avoid saying the word "can't" and instead have them learn how to say things like, "This is my ice cream and you can have your ice pop or snow cone."
Create a visual. Building a colorful food chart can be a fun way to help your child begin to see what foods are safe. It can also help motivate him and increase his willingness to proceed with new food trials in the hopes of adding more and more safe foods to the chart. Resist the temptation to create a visual of unsafe foods, which can instead be explained verbally. Focus on building positive awareness of the foods your child CAN have as you are working to expand his diet and increase his willingness to eat.
Help your child experience the social aspects of eating. Sit down together as a family and all enjoy a plate or bowl of the food you are trialing with your child. Talk about how it tastes, what you like about it and make a big deal out of how you are all happy to be eating the same food together. Ask your child if you can try some of his snacks or new foods. He will feel proud to share his new foods with you.
Be honest with your child and stay positive. Inevitably, the moment will arise when your child will ask, "Will I be able to eat pizza someday?" or "When will I be able to have a bread like the other kids?" You may consider saying, "When you get bigger, we will try that food, and we hope your belly will be okay with it." Or try this, "We are working hard to get you more safe foods. If you keep eating and trying new foods, you will be able to eat more and more!"