Towards a Better Understanding of Chronic FPIES

One of the greatest causes for confusion and frustration in the parent community surrounds the definition of chronic FPIES and whether it is representative of the condition. Whereas acute reactions are more commonly seen and documented in literature, we recognize and highlight the lack of literature representing chronic reactions; this contributes to the dismissal many families face from their physicians when describing symptoms.”

Chronic FPIES has been the subject of confusion and frustration for parents and physicians alike. Unlike acute FPIES, which typically presents with delayed, profuse vomiting, diarrhea, dehydration, and possible shock, the symptoms of chronic FPIES are often more “murky” and can be difficult to distinguish from other conditions.

“Chronic FPIES is an ill-defined condition characterized by intermittent vomiting, watery or mucous diarrhea, poor weight gain, and dehydration… In cases of ‘chronic’ FPIES, the differential diagnosis is even more difficult. The diagnostic boundaries, in particular with other non-IgE-mediated gastrointestinal food allergies are blurred, and it is difficult to differentiate this condition from them. This underlines the need for a precise definition.”

At IAFFPE we’ve been working diligently to make chronic symptoms part of the medical dialogue on FPIES. This blog post highlights some of our recent efforts and offers links to new medical literature that has broadened the discussion of chronic FPIES.

Efforts to Educate Physicians

  • FPIES Debunk the Myths PostcardThis past March, thousands of attendees at the Annual Meeting of the American Academy of Allergy, Asthma & Immunology (AAAAI) received this attention-grabbing postcard. It is part of our effort to ensure that allergists, immunologists, and other healthcare professionals become familiar with chronic symptoms.
  • We recently developed a new resource for physicians: “Clinical Manifestations of FPIES: Acute and Chronic.” IAFFPE Medical Advisor Dr. Anna Nowak-Wegrzyn developed this piece to broaden the dialogue on FPIES. Physicians who attended AAAAI received this handout—please share it with your medical team as well!

Chronic FPIES in Recent Medical Literature
This month, a special edition of the medical journal Current Opinion in Allergy and Immunology focused on FPIES. Four of the articles included sections on the topic of chronic FPIES.

More Work to Be Done
IAFFPE’s task force is hard at work developing the first consensus guidelines for FPIES. Chronic FPIES will be included in the discussion, highlighting the importance of differentiating related symptoms from other conditions.

In addition, we will continue to leverage our partnerships with organizations such as AAAAI and the National Organization for Rare Disorders (NORD) to educate physicians and advance the discourse on this poorly understood aspect of FPIES.

A Personal Account from the FPIES Education Conference

Travel Grant Recipient Shaula BrownThanks to Travel Grant recipient Shaula Brown for the following guest post looking back on her experience at the 2013 FPIES Education Conference. For those in our community who couldn’t share the day with us, stay tuned as the video will soon be available featuring some of the highlights and valuable information that was presented at the FPIES Education Conference.

After coming home from the 1st Annual FPIES Conference put on by IAFFPE, I am feeling grateful, renewed, and energized. I learned so much!

I was so excited to hear about the first FPIES Center to be launched at CHOP. We are lucky to have good doctors here in Denver, but I know others are not and I can only imagine the benefit of having so many doctors in one place focusing on FPIES care and research.

It was also very interesting to see the information being presented on chronic reactors as well as acute reactors. My son Ryan has had both types of reactions but tends more towards the chronic side. Our allergist has diagnosed Ryan with FPIES because of his acute reactions but told me that his chronic reactions are not FPIES and instead are just intolerances. It was great to see that chronic reactions are not only very real but are also a recognized part of FPIES. The charts that compared FPIES to other GI and allergy disorders were helpful too. I really got a better, more detailed understanding of the way FPIES works. I also feel more confident in managing the daily issues that we’ll face, from food trials to how to handle FPIES in social situations.

1390623_641234089255917_1757669574_nI can’t begin to describe to someone with a healthy child how lonely and isolating this world of FPIES is. I feel alone, confused and discouraged so often, but the conference let me see that I am not alone. The chance to meet and connect with other parents and even some older children with FPIES was a huge gift. It let me know that I am not in this alone, I am not crazy, and we will get through this—we will survive this! The conference also helped me to understand that my needs as a parent and caregiver are important too.

I am fired up and energized to help spread the information I received to others. I am hoping to meet with other parents in my area to share what I learned (and hopefully turn that meeting into a regular support group). Ryan’s pediatrician also asked if she could get more information from the conference to educate herself, the other doctors she works with, and her other patient with FPIES. I can’t wait to pass along the information to her!

As much I got out of the conference, I know there is still more to learn and more to share. I’m excited for the conference video to come out so that others can see the highlights and get a sense of how special it was for our community to connect and learn together. I am already looking forward to next year’s conference with the hope I can attend again. I want to thank IAFFPE for the generous travel grant that allowed me to attend the conference. I am so thankful I was chosen and can’t wait to work more with them in the future!