Patients and families impacted by FPIES are resilient and strong. Coping with a rare disorder brings about many emotions, concerns and fear. Often, acknowledgment and validation of the feelings associated with dietary limitations can be just as important as preparedness and avoidance.
FPIES may complicate the simplest activities for you and your child. When struggling to cope, remember the 3 P'S:
Practice Prepare Participate
The 3 P's help to alleviate stress and worry while encouraging empowerment and empathy. I-FPIES is pleased to offer coping strategies to support the many challenges of living with FPIES.
- Weekly check-ins can be a great way to encourage communication about feelings and worries associated with FPIES. It is also be an excellent opportunity to create an action plan and map out the best ways to address similar feelings and situations.
- Have your child rate their feelings in the same way they may rate their pain, on a scale from 1-10. Create a "coping corner" in your home filled with supportive tools and resources your child can utilize depending on their rated number. For example, a "1" may warrant a family hug while a "5" may call for a foodless slumber party with Mom and Dad. Encourage your child to be proactive in identifying what's needed to help cope. After all, empowerment and validation are the best medicine.
- Before appointments, create a list of questions with your child. During long appointments, children may feel lost in the technicalities of the provider/parent discussions. Request that your child be a part of the discussion and decision-making processes. As an example: Have an upcoming food challenge? Work together as a team to determine what food is best to trial given your child's safety and interests. An involved child will feel more in control and less anxious.
- Preparing for procedures and lab work can be very anxiety-provoking for young children. Request an appointment with the Child Life Department of your treating hospital. Ask for tips to reduce worry prior to arrival and request that they be present before and during procedures to offer support and helpful tools during stressful times.
- Write out a list of your child's list fears and questions. Communicate these fears with your provider prior to procedures and develop an action plan to address both the physical and emotional challenges your child experiences during these appointments.
- Know that it's okay to share your feelings with your child. Feeling anxious about a food challenge? Share those feelings and help your child identify their feelings. Sometimes sharing a story of your own that is related to their experience helps to encourage problem-solving techniques as well as empathy and validation.
- Advocate for inclusion in social situations. Have a school party? Work with your child's teacher prior to the party to identify a safe treat or activity for the class. Speak with your child about classroom interests, hobbies and favorite foods. Engage your child in the planning process and encourage him/her to solicit ideas from their classmates. Often times, FPIES safe treats become the desired item for the whole class. With open communication you can turn isolation to excitement and inclusion.
- Lastly, seek professional guidance if you have concerns about your child's coping. It is okay to ask for help during these stressful times. Working with a professional to navigate through the emotional challenges can be a rewarding, helpful experience.
- Buy extras of your child's favorite blanket, toy or stuffed animal. Keep a few clean so you always have one ready for use.
- Provide a few stuffed animals or dolls for them to bond with. Encourage role playing with these items and act out situations to develop problem-solving techniques.
- Pack a "comfort bag" and keep in your vehicle in case of emergencies. Pack a few movies, toys, comfortable pajamas, and other essentials.
- Prepare a basket with a few special items: a new DVD to watch, a new stuffed animal to cuddle and a couple new books to sit and read together.
- Host a family sleepover! Reactions and recoveries usually require extra monitoring. Bring sleeping bags into your family room and tuck in for a night of movies and games.
- Use recovery time as extra special bonding time. Set aside all your "to dos" of the day and be fully present and intentional.
- Create a shelf in your refrigerator specifically for your child. Place safe and toy food items on the shelf. Pull out an apron and pretend to make delicious meals with your child. Give your child the opportunity to "cook" for you.
- Help ease your child's discomfort by using play and imagination. Here are four easy ideas:
- Wand: A wand can help your child focus on something else and encourage imagination.
- Bubbles: Using bubbles can help blow the hurt away, and deep breathing can relieve stress and anxiety.
- Music: Music is relaxing, soothing and can be played in the background while your child is focusing on a different activity.
- Story and Activity Books: Books can help transport your child to another world and take their mind off any discomfort.