Becoming the Advocate

Advocating for your infant or child as he or she lives with an FPIES diagnosis can be complex in many ways. In learning how to be an effective advocate, parents often wonder where to start.

Hit the Books

Educating yourself is essential. Understanding the diagnosis and getting to know your child’s unique experience with it will help to build a foundation as an advocate.

  • Gain understanding of the diagnosis through medically reliable sources, such as scholarly journals
  • Gain understanding of your child’s experience with FPIES through food and symptom journals
  • Gain knowledge through your child’s providers– consider medications, procedures, follow-up care, and any additional written resources he/she can offer.

Be Prepared

Preparation for appointments may seem a bit overwhelming at first! Advance planning can help to relieve some of the stress and allow you to focus on the goal of each appointment.

  • Write some questions down before the appointment. If your child is seeing more than one provider, you may want to address different questions with different professionals.
  • At the appointment, be ready to take notes. It can be helpful to bring along an extra adult to help your little one cope with the appointment while you focus on learning!

Nurturing the Young Advocate

As your child grows older, you will want to teach him or her advocacy tools in order to promote improved quality of care. There are different tools appropriate for each age and developmental stage of the child and it is important to allow these tools to “grow” with your child.

  • Show your child how to be a part of his/her team– lead by example!
  • Encourage him/her to ask questions and express opinions
  • Help your child to better understand his/her diagnosis (A medical social worker, play therapist, or child life specialist can help you to provide tools!)

Sometimes communication challenges can arise. When they do, it is important not to panic! Keep in mind that you are building relationships with a common goal– your child’s health. Focusing on maintaining an open, honest partnership with providers can help to smooth any bumps in the road. Remember:

Remain calm and respectful in your vocal cues and body language

Make notes of key points. Address them clearly and confidently

Demonstrate the qualities of an active listener. Take time to listen to all members of the team

Stay on topic, working toward resolution of each point addressed

Page published: August 14, 2014. Last update: June 6, 2018. Copyright © 2014, The FPIES Foundation