FPIES Trends and Insights from the Patient Registry

FPIES Trends and Insights: 
Caregiver/Patient Reported Data from the Global Patient Registry 
By Hilary Lagerwey 

For four years now we have been working on collecting data from FPIES patients across the world using our Global Patient Registry from Patient Crossroads, a leading registry platform among rare diagnosis.

First of all, we want to say a big thank you to those who have already filled out the survey with valuable information!  There are several good studies out there describing what FPIES looks like, and our goal is to supplement that research with up to date information gathered from an even larger pool of families that we are able to reach using this tool. We hope that this information proves immediately valuable to families and doctors who are managing this diagnosis on a daily basis. We also hope to provide some insights to researchers that might prompt further study.

Anyone who fills out the survey has access to all of the cumulative data so feel free to browse and analyze for yourself, but today, in honor of Global FPIES Day this month (Oct.14th!) we thought we would share some of the insights we’ve gleaned so far. We recognize that since we are collecting data by voluntary responses some of our information may look skewed as compared to a more random sample; however we know that these results are important to share and that they represent a significant portion of FPIES families.

If you haven’t filled out the survey yet, please do so! The more data we have the more we can learn. The more information we can give to doctors and researchers, the more we can advance research to benefit all families living with FPIES.  Here is a look at what our data says about some frequently asked questions:

Do FPIES symptoms typically appear with the introduction of solid foods and formula or is it possible to react through breast milk?

57.4% of survey respondents reported exclusive breastfeeding when symptoms began.

Is FPIES typically outgrown in early childhood?

Out of patients 3 or older in our survey data, 15.8% report outgrowing acute reactions. 1 patient reported is under 3 and reported already outgrowing acute reactions. Several patients well into their elementary school years state that they still have not outgrown acute reactions.

*Also out of patients 3 or older, 15.8% report outgrowing chronic reactions.

50% of those who report outgrowing acute reactions report still experiencing GI symptoms with previously reactive foods.

Do most kids only react to one or a few foods?

Out of those who report projectile vomiting with reactions, 51.9% stated this occurs with only 1 or 2 triggers vs. 48.1% who stated they experience projectile vomiting with more than 2 triggers.

26.9 report projectile vomiting with 5 or more triggers.

What symptoms are common with reactions?

81.3% report projectile vomiting

65.6% report diarrhea

48.4% report visible and/or occult blood with stool

Thank you to FPIES Mom and FPIES Foundation volunteer, Hilary Lagerwey for compiling this survey data. 

Graphic created by FPIES Mom and FPIES Foundation volunteer, Melissa Rice 

Be the VOICE of Education for those living with Food Protein-Induced Enterocolitis Syndrome on Global FPIES Day!

According to the FPIES Global Patient Registry, caregivers/patients report an average of 1-5 months, with several families taking up to a year, for a child to receive an FPIES diagnosis.  A year to diagnosis. A year of experiencing symptoms and reactions. A year looking for answers and support. The FPIES Foundation is working to change that.  We give more children, affected individuals, and their families help and support when we educate people everyday about the diagnosis.

This is where you come in. 

As we celebrate Global FPIES Day on Wednesday October 14^th; we want you to talk to your family, friends, caregivers, healthcare providers, daycare's, schools, and more about FPIES. Teach them the about the diagnosis. Don't know how to start the conversation? We can help! Don’t know what to share?  We can help!

And then, join us at www.fpiesday.com for our Global Day Virtual Online Interactive Community Event and find new resources and support for you and for you to share!

Also, don’t forget to register and complete the surveys on the FPIES Global Patient Registry! This is your chance to make an impact on the FPIES diagnosis. What better time to start than on Global FPIES Day? 

If you love our work then tell the world! It’s easy and only takes 3 minutes! Go here to get started! http://greatnonprofits.org/reviews/write/the-fpies-foundation

This post was written by the Executive Board of The FPIES Foundation 

What is an ICD-10 Code?

The FPIES Foundation is excited that the Centers for Disease Control (CDC) now recognizes Food Protein-Induced Enterocolitis Syndrome (FPIES), and has appointed it with diagnostic code K52.21, among allergic digestive diseases. This is a step that has the building blocks to make diagnosis and medical/formula coverage easier for a lot of children and their families and was supported by The FPIES Foundation. We thank Dr.Anna Nowak-Wegryzn (Founding member of The FPIES Foundation Medical Advisory Board member) and I-FPIES for their role in this initiative.

What is an ICD-10 code and what does it mean?  ICD is an acronym that stands for International Classification of Disease and the #10 is because this is the 10^th revision.  This ever growing and changing list is maintained by the World HealthOrganization (WHO).  WHO defines ICD as, “. . .The standard diagnostic tool for epidemiology, health management and clinical purposes. This includes the analysis of the general health situation of population groups. It is used to monitor the incidence and prevalence of diseases and other health problems”.

Simply stated, ICD codes are utilized medically for precise tracking and quicker analyzing of a diagnosis, under its specific code. For FPIES, this can help with research to study patterns of the diagnosis, track complications, and treatment outcomes.  ICD codes are utilized in health services looking for patterns in such things as quality and access of care, as well as quality of life. Insurance companies also utilize this code in classification for payments of services and coverage of prescriptions related to the diagnosis. For FPIES, this can help insurance companies in deciding to include formula prescriptions to be paid and/or reimbursed. (***Please note, it is not an automatic coverage by insurance or government medical aid). The ICD coding is an important piece of health care operations which includes health services and insurance reimbursements, in addition to medical research.

The CDC has granted FPIES a specific code, K52-21: 

• K tells us the chapter of the classification it is in: “Diseases of the Gastrointestinal System”
• 52 is where it fits along this category. 52 being “Other non-infective gastroenteritis and colitis” and,
• .2 is “Allergic and dietetic gastroenteritis and colitis” and finally,
• 1 added gives it its specific Food Protein-Induced Enterocolitis classification. 

In the future, there could be additional numbers to further define sub-classes within this diagnosis code. 

Additional codes to include the other known allergic/food protein induced gastrointestinal disorders will be added as well. 

Establishment of an ICD code for FPIES is an important step in further defining this diagnosis and increasing its visibility to enable increased support and care for children, and their families, living with this diagnosis.  We recognize there is much more work to be done to assure all children along the spectrum of this diagnosis have this same access to adequate support and care and look forward to this continued work in collaboration with our medical advisory board and this community.  

This post was written by the Executive Board of The FPIES Foundation 

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