International Association for Food Protein Enterocolitis

Tips for Managing FPIES at Home

Eat with your child

Eating is a normal and everyday part of life. It can be very difficult, though, for an FPIES family. Try and work to “teach” your child about eating. Although many FPIES children have restricted diets, there are steps you can take to help your child have a positive association with food. While preparing your child’s meals, ask them to participate and help you to prepare it. When eating, discuss positive events and encourage warm, happy feelings while eating. Create a quiet and calm environment for your child’s mealtimes. If you are struggling to get your child to try new foods, try this easy and fun game: Place your child’s foods (or ice, formula in liquid or frozen form, etc.) on a plate. Ask you child to close his/her eyes. Place the food in the child’s mouth and ask them to guess which food it is they are eating. Your child will become engaged and excited to play this game. If he or she can guess which food it is correctly, cheer your child on! This is a fun game that the whole family can participate in.

Teach your child to not their share food

Starting at a young age, you can begin to teach your child about what foods are safe and which foods are not. Sit with your child and explain that there are “safe” foods and “dangerous” foods. Point to the foods that are safe and say, “This is ‘Joey’s food’” and point to the foods that are not safe and say “allergic” or “This is safe for ‘so and so’ but not safe for Joey. Joey is allergic to this food.“ This will increase positive communication skills about what is a safe food and what is not, and equip your child with a tool to remain safe in social settings. Help your child to learn to tell adults around them that they must ask you, or another designated adult, if the food provided to them is safe or not, prior to consuming. Ask the adults and children around you to do so as well. During mealtimes, do not eat off of your child’s plate; instead, make yourself the same food on your plate. This will help your child to learn the boundaries to only eat what is on his or her plate, which may reduce the risk of a reaction.

It may also be helpful, as your toddler becomes more aware, to educate them about FPIES. A child can learn to communicate that he or she has FPIES and that this is why they have such strict dietary restrictions. The Food Allergy & Anaphylaxis Network (FAAN) reports that “more than 15 million Americans have food allergies.”¹ Most likely, your child will meet or come in contact with another peer or adult diagnosed with a food-related allergy. Find support within your community and with other families and children that have food allergies. This may make social settings less stressful, more mindful and enjoyable.

Encourage positive play with food; let your child feed you

Place your child on your lap and let them feed you (if deemed safe by your physician). Help your child to see that eating is enjoyable. You may even want to select a food that you have deemed “allergic” or “dangerous” and put the food by your plate. When your child tries to feed it to you, say “No, that’s dangerous for Mommy (or Daddy).” This will help teach your child the boundaries of safety. Letting your child feed you is an enjoyable experience for us parents too. It gives us a chance to watch our child have a positive interaction with food and develops motor skills.

Improvise when you can

This does take work and plenty of patience, but if you know that your child can only eat certain foods, you can actually work with them. If berries are safe for your child you can make your child a fun treat at Christmas time. Purchase a styrofoam cone, cut the strawberries in half and fasten to the cone to “create a tree.” Add blueberries for ornaments and powdered sugar for snow. While the other children eat cupcakes and cookies, your child can enjoy his/her special treat! This usually sparks the interest of the room. For birthdays, try a foodless cake. Purchase several different sized boxes and fill each one with a gift. Then, wrap the boxes with wrapping paper and stack them to form a “cake.” Add “frosting,” e.g. stickers, or play jewelry, or your child’s favorite character. Keep in a hidden place until your child’s birthday and surprise!

*Stay tuned for a collection of photos of foodless cake and alternative food options, coming soon to our Recipe Club.

Try to remain calm

If your child accidentally ingests a food, try your hardest to remain calm. IAFFPE knows how stressful this can be for the entire family. When a parent is panicked, the child may associate food with your panic. This may then cause future difficulties with food trials. As hard as it is, try to maintain a sense of calmness, remove the food from your child’s mouth and reiterate, “This is a dangerous food for ____.” If a reaction occurs, always follow your emergency plan defined by your physician.

Finding positive support is also a helpful way to reduce the worry associated with food trials and accidental ingestions. There are many FPIES-related support groups* online and IAFFPE is always here to offer you a shoulder to lean on.

If an accidental ingestion occurs while your child is with family or friends, ask your family and friends to stay calm and follow the plan of action that you have provided for them. We suggest supplying family and friends with a copy of IAFFPE’s “ER Letter.” If your family is struggling to understand the risks associated with FPIES, IAFFPE is here to help support you in educating your family too. Open communication with family and friends is very helpful to reduce worry and IAFFPE can assist you in this process. If a family or friend cannot respect your wishes and maintain your child’s safety, it is okay to leave or ask the family member or friend to excuse themselves. This is your child’s well-being and safety. IAFFPE is pleased to offer a Family and Sibling Support Handout to assist you, yield increased awareness, and educate extended family members and friends, coming soon.

*IAFFPE does not own, endorse or otherwise support any one group. We recommend caution when obtaining medical advice from non-medical professionals. As always, all healthcare decisions should be discussed with your physician.

Shift your focus

IAFFPE knows how painful and difficult it can be to have a child with FPIES. Instead of focusing on what your child cannot eat, try to focus on what he/she can, and how to modify and create new delectable creations with it! If your child’s physician advises you to avoid trialing new foods for a while, although difficult, it will give you an opportunity to plan all of the exciting meals you hope to give your child in the future. This break is a new opportunity to channel your creativity. Healthy nutrition and safety are crucial for FPIES patients. If introducing new foods will take longer than hoped, it is ok. You are getting one step closer to a possible future of eating “normally.” Create pleasure with food, even if it just a bottle, and that will in turn, benefit the child in the long run. Try creating games, finding fun new cups, adding stickers to a bottle or focusing on crafts during difficult mealtimes.

Maintain a sense of normalcy

Naturally, any parent with a child with a medical issue will feel the need to overcompensate and worry for their child. IAFFPE suggests focusing on creating normalcy and balance in all areas. Encourage and support your child’s growing identity and talents. Allow your child to play and engage in sports, activities etc. Teach them that although they may have differences in what they can or cannot eat; that they are still a child just like their friends. FPIES will then only be a piece of them, and not what defines who they are, which in turn, creates a sense of normalcy and balance in their difficult lives.

IAFFPE wants you to always remember to take care of yourself, too. Self-care is so important for a parent of a child with a rare medical condition, as the daily maintenance of caring for your child can be grueling and extremely stressful. You, too, can take a break when needed. Plan a getaway, continue to maintain your health and visit with friends and family. Take time to enjoy life’s treasures and always keep in mind, just how strong and wonderful you truly are!

¹ The Food Allergy & Anaphylaxis Network (FAAN). Food Allergy Facts and Statistics for the U.S. Retrieved from http://www.foodallergy.org/page/facts-and-stats