“I Have FPIES” is a rhyming story from diagnosis to learning to live with this rare food allergy condition. It is filled with universal experiences that children and families navigating FPIES will understand and relate to. It provides a sense of community for children who may feel different than their friends and family and a sense that they are not alone with their feelings!
Navigating your child’s Food Protein-Induced Enterocolitis Syndrome (FPIES) can be tricky, but know that many parents face this challenge, so you’re not alone. A 2021 review shows that FPIES may not be as rare as it once was. This diagnosis may feel limiting for parents who want their children to explore new foods. However, proper research will help you make informed decisions, so your child still enjoys a tasty and balanced diet.
Researchers were very interested in learning more and have published a paper on what they have learned, from YOU! The results of the survey show researchers that the key priorities for the community are: better awareness among health professionals, having diagnostic tests to avoid misdiagnosis, as well as predictive tests to guide safer food trials. Future research and initiatives will be guided by these priorities!
While attending an online event, Aspen Ideas: Health 2022, there was a discussion panel on the topic, “Partnering with Patients Strengthens Science”. One of the panelists, Sneha Dave, in discussing the importance of the condition community, said these words: “One thing we can’t forget – while we are waiting for a Read more…
A few months ago, we were introduced to Kallie and her mom, Rachele. Kallie introduced us to her breathwork cards and videos. Kallie is 7 years old and she loves swimming, playing with her friends and sister, horseback riding, creating art, and she loves doing breathwork with everyone in the Read more…
Talking about FPIES is a 3-part blog series by Angelika Sharma, FPIES Foundation volunteer. Explaining FPIES to your child You may not have conversations with your baby or small child yet, but you are already communicating with them about their FPIES every day. In part three of our Three-Blog-Post Series Read more…
Talking about FPIES is a 3-part blog series by Angelika Sharma, FPIES Foundation volunteer. Effectively sharing about your FPIES needs In the early days after an FPIES diagnosis, parents learn so much: from information about the diagnosis to navigating their new everyday life. As their days are re-shaped and the Read more…
Talking about FPIES is a 3-part blog series by Angelika Sharma, FPIES Foundation volunteer. How to Explain FPIES to Others As the parent or caregiver to a child with FPIES, you regularly find yourself having to explain the needs of your child: first with family and friends, then in places Read more…
Caregiver Anxiety and FPIES A guest post written and submitted by Mun Cho, Registered Dietitian and Food Allergy Parent. FPIES (Food Protein-Induced Enterocolitis Syndrome) is a non-IgE food allergy, which is different from the IgE-mediated food allergy that could potentially be anaphylactic. Acute FPIES involves excessive vomiting, which could lead Read more…