When your child is diagnosed with Food Protein-Induced Enterocolitis Syndrome (FPIES), you become more than just a parent; you become an advocate and educator on your child's behalf. Because food allergies in general are often misunderstood, your voice is essential to educate caregivers and family members about FPIES and the seriousness of an FPIES reaction.
Planning and Preparation
- Family and caretakers will likely play an important role throughout your child's FPIES journey. Even among your own family members, you may need to become a strong advocate to engage them and get everyone on the same side in supporting the safety of your child. When empowered with information, they can help you build a broad, cohesive safety net for your child.
- Understand you may face challenges. Some family members may understand food allergies or be willing to learn about them, but others may have more difficulty understanding. After all, FPIES can be puzzling to even the most experienced parents. Often times, resistance is due to fear. When a family member is having a difficult time understanding, it may be useful to help them identify what is causing their concern and encourage them ask any questions they may have. If you engage them in a way that is relaxed and friendly and describe FPIES and what needs to be done in simple terms, they are more likely to want to help keep your child safe.
- Arm yourself with educational tools. I-FPIES offers an abundance of resources availble for your families review. Our 'What is FPIES' Handout, Caregivers Action Plan and ER Letter are essential documents to have on hand when educating caregivers about FPIES. Sharing these tools with your family and friends can help ensure safety, give them a sense of inclusion and empowerment, and may decrease their worries.
- Embrace the two Ps! Prevention and preparedness can be applied in every situation. Prevention includes avoiding accidental ingestions, communicating clearly, and teaching others about managing FPIES. Preparedness includes being able to recognize the signs and symptoms of an FPIES reaction and initiating an emergency response should an acute reaction occur.
Key Points to Address
- Most people have never been exposed to FPIES and are unaware of the dangers. An open discussion with brief stories or examples can help others understand the everyday realities of FPIES. Speaking calmly about the types of reactions your child has had, what you need to do to keep him/her safe, and how reactions are handled can increase insight and empathy. Emphasize that FPIES is real and serious. Outline and emphasize the need for safety and inclusion to reduce the potential for accidental reactions prompted by miseducation. After all, prevention and preparedness are the best tools to keep your child safe.
- Understand that resistance may be a common initial response. Regardless of how much media attention food allergies have received, many still find it hard to believe that "good, healthy foods" could be harmful. It is important to clearly define and emphasize the importance of reaction avoidance. Offer a partnership relationship with your family members. Invite them into your kitchen to learn how to avoid cross contamination. Use printed handouts, educational videos, or other reference materials to illustrate your points. Visit our 'About FPIES' section for some links to get you started.
- Be as specific as possible when discussing your child's trigger foods as many people are unaware of hidden ingredients. For example, if your child reacts to dairy, the average person may think dairy only includes milk, cheese and ice cream. It's important to explain that "dairy" includes any food that contains dairy products or dairy derivatives in the ingredients.
- When you are communicating with someone who will be caring for your child, it is important that they are able to recognize a reaction and are prepared to initiate your child's emergency action plan. Our Caregivers Action Plan puts this essential information in writing. Emphasize symptoms and speed in the event of a reaction. Discuss your child's common symptoms as well as other potential symptoms during an FPIES reaction, the delayed nature of the reaction, and when to call 911. Do not be afraid to role play events or answer any questions they may have about this process.
Handling Tough Situations
What can I do when a family member is resistant or unsupportive?
- If your family member's response is due to a lack of information or education, try to provide them with tools to help get them up to speed on what they need to know. Use printed FPIES Literature, Educational Videos, handouts from our About FPIES section and your own knowledge of FPIES Research and News Stories to clearly demonstrate your points. Sometimes people find this information more credible when it comes from third-party sources.
- Evaluate your expectations. Learning that your child had FPIES was most likely a challenging and life-changing event for you. For extended family members, this may come with similar worries and feelings. Some family members will have more support to offer than others, and this is okay. Accepting the possibility that some may have limitations in their ability to fully support you and your child is difficult, but important. Exploring additional avenues of support may help decrease negative feelings associated with others limitations. It will take the focus off of who is NOT available and help foster relationships that provide the support you feel you need.
- Evoke empathy. Focus on open communication and provide an environment where questions can be answered and ideas can flourish. Emphasize that you know everyone in the family wants what is best for the child, and you need their cooperation to make that happen. Let them know that their support and participation make a positive impact on your child and on your relationship.
- Try to get the person to understand that their actions could put your child's health in danger. Let them know exactly what you expect from them and be as specific as possible. Provide them with a Caregiver Action Plan and other materials that they can refer to as needed. Validate their confusion and allow for processing time. By educating and preparing your family members, they can feel involved and an integral part of your team.
- "Understanding" can be a challenge. As much as a caregiver may want to understand, it is important to recognize that they will be limited because they themselves are not experiencing your day-to-day stress.
- Request "just an ear". Sometimes FPIES families can become overwhelmed with well-meaning suggestions that may not be applicable for your child. It is natural for someone who loves you and your child to want to help "fix" the situation. It is okay to request an ear to listen. Some helpful ways to ask this of your family or friends (or to initiate in your conversation with them) is to say: "What I need most right now is a listening ear. When I talk about how I feel, please do not feel pressure to provide a solution. Giving me an opportunity to talk my feelings out helps so much."
- When a breakdown in communication occurs, try to address these issues as soon as possible. Use this as an opportunity to reiterate your family's saftey plan. Offer your family member an opportunity to express their concerns and questions and provide answers to help educate them further.
- Your child's welfare comes first. Despite your best efforts, some family members or friends may not "get it." When those people choose to not take precautions or work with you despite your attempts to educate and inform, it can lead to a very difficult situation. When all else fails, your child's well-being and safety come first, and you may need to make some difficult decisions to ensure your child's safety.
- Acknowledge when your caregiver is making effort. It is often more important (and more effective) to catch your family and friends when they are doing something right. Did your sister wash her hands before feeding your child? Did you mother purchase a difficult-to-find safe food? Did your neighbor provide a safe snack at her child's party? Reinforcing these efforts by acknowledging them will increase the frequency of re-occurrence. Be sure to take a moment and celebrate the small and grand support of your family and friends.
For more informational on dealing with some of the emotional and social difficulties that FPIES presents for parents, please visit this link.