Food is an everyday part of life and an important aspect of our culture. For those with FPIES, a variety of emotions often present themselves throughout the journey. While it can be comforting to finally have a diagnosis, it can also be overwhelming.
The emotional and social impact of FPIES is equally as important as medical and emergency preparedness. Here are a few pointers to help you care for the social and emotional issues for you—and your child— when facing FPIES. At I-FPIES, you are always welcome to reach out for creative ideas, support and a shoulder to lean on.
Proclaim Your Own Normal
Celebrate and acknowledge your child's safe foods.
Even with a limited diet, foodless options can stimulate joy and excitement in everyday settings. Finding the balance between safety and creativity can be a fun experience and an opportunity to create new traditions.
Tip: Create a foodless birthday cake each year, even if you have enough ingredients to make an edible cake. Each year celebrate your progress but maintain a new and individualized tradition specific to your journey.
Collaborate with daycare, schools and even your own family members to develop inclusive ways to partake in everyday activities.
Communication is key. Working with your caretakers can ensure inclusion and positive outcomes. Get them involved!
Tip: Have an foodless tea party. Focus on dressing up, inviting stuffed animal guests and enhancing imagination. Use this forum to teach safe practices to avoid cross-contact. Include family members or staff to familiarize them with the best practices, while giving your child a sense of control and enjoyment.
With preparedness comes success.
Prior to engaging in social situations, map out a plan based on your family's values and needs. Decide on an action plan and brainstorm potential challenges. Planning ahead can help ensure a positive experience.
Tip: Attending a birthday party? Prior to arrival, reach out to the host and ask their meal plans. Prepare an FPIES-friendly treat, or bring a foodless option for the whole party to enjoy. You may find that the party attendees gravitate towards your child's special treats.
Find unique and creative ways to make holidays and special occasions just that—special. Maintain your personal and familial traditions, but add a twist. As an FPIES parent, you have an amazing opportunity to empower others and create new and fun ideas.
Tip: Host a Halloween party that focuses on the "trick" not the "treat". See how creative your family and friends can be when asked to take the focus off of food and onto fun!
Take Control of FPIES
- If you suspect FPIES, seek out a professional medical diagnosis .
- Learn as much as possible about FPIES—for your knowledge, for the ability to advocate, and most of all, to equip yourself for the care and safety needed to manage the condition. I-FPIES offers educational materials for both the newly diagnosed and the experienced FPIES patient and family. You can also gain access to research articles and share materials with your provider.
- Find or create a support group—either online or in your own community. Click here to learn more about our FPIES Support Group program .
- Be prepared. Print handouts from our section on Treatment and Managing Reactions , including our emergency letter and what to do when a reaction leads to shock. Keep a hospital bag ready in case of emergency and work with your allergist to create a plan with clear instructions on how to handle a reaction.
- Learn to correctly identify ingredients when reading labels . Be sure to read labels every time you buy a product, as ingredients can change from time to time.
- We suggest the rule of three: Read ingredients at the store, when you arrive home and unpack, and anytime the food is served. Keep in mind that ingredients can change without re-branding of the product.
- Educate those around you. Inform friends, teachers and family about FPIES in a clear, concise, calm manner. Don't be afraid to have the conversation as many times as needed. Help them understand the seriousness of the condition and be very specific about what they can do to help you. Our Communicating with Caregivers and Caregiver Action Plan pages are helpful resources to decrease the challenges in educating those in your support network.
- Do your best to manage the fear that comes with FPIES. Remind yourself that if you/your child are careful and understand what foods are safe—your child will be safe. While FPIES is definitely a challenge, it is manageable.
- Don't hesitate to ask for help. Support can come from many people, places and resources.
- Inform your provider where you are struggling. It is helpful for your physician to know what your greatest challenges are, even if they do not present in the clinical setting. Your physician may have additional avenues of support or creative ideas to help guide you through the journey.
There is a whole range of emotions when it comes to navigating FPIES; there will be the best of days and the worst of days along the journey. Don't hesitate to seek help if you or someone you love is experiencing feelings of isolation, fearfulness or hopelessness. Remember that receiving an FPIES diagnosis doesn't mean you or your child have to stay on the sidelines of life. The majority of FPIES patients lead healthy, happy lives—and your child can too.