FPIES: An Update on Natural History and Review of Management

Food Protein-Induced Enterocolitis Syndrome: An Update On Natural History and Review of Management

I love new articles on FPIES.   The above article was just published in August, and it is FULL of GREAT information.   It is a terrific synopsis of what has been studied thus far in FPIES, and how it is currently best managed.  Dr.Nowak-Wegrzyn has authored some great articles lately and it is exciting to see.   Most exciting to see is the table on page 2 giving descriptions for Chronic and Acute FPIES.   My son suffered from chronic FPIES which made his diagnosis more difficult to come to, as his acute reactions weren't happening as frequently as his chronic reactions.   It was a very muddy picture, it still is a muddy picture because his body reacts chronically as we seek to introduce foods- he "builds" to a reaction vs. having an acute shock reaction from the first 1/2tsp of food.  The acute shock reactions have been what has been studied over the past 20yrs. (rightly so due to their severity), now it appears groundwork is being laid to further study and define Chronic FPIES that so many other FPIES kids experience as well.

This is a great article, giving good descriptions for the history of FPIES and definitions of what is known about diagnosis and management of it.    It really is exciting to see so much being studied, and further recognized in the past year.  

An FPIES Toolbox

FPIES is a puzzle, it does not fit in a box.   The diagnosis can be complex, untreated symptoms leading to new symptoms...it can be chronic or classic.  No child seems to be the same- no triggers the same, response to treatments vary.  It is medically complex. 

Personally, I started my toolbox very empty, I began to fill it with: nuts and bolts (ie FPIES studies). Then came the nails that secures me in place with all the shared knowledge (ie FPIES families).  Then a few hammer's of varying sizes (ie to hammer in a point)- did you know kids can react to meat because of the feed that an animal eats? And that they can react to the proteins in mothers breastmilk? Then a few other tools to fill in the gaps:  Food Family Lists and Janice Vickerstaff guide to food introductions, as well as resources such as PIC and books like GAPS; all can fill in some holes here and there- used as tools to guide, taking bits and pieces of knowledge to apply to our puzzle.  Some glue has come along and proven to be quite effective already- ever use gorilla glue? (ie Probiotics).  Some screws were needed (diagnostic tests), not to test for FPIES but to rule out other related medical conditions (such as Eosinophilic Disorders and Celiac Disease.   A good variety of screwdrivers is very helpful to tighten up the seams (ie Allergist, GI, Dietitian, Pediatrician).  Every good household toolbox needs a flashlight, we found some light in research on Non-IgE food allergy to shed a good light on my thought process on individualization and the Immune and Gut involvement for the FPIES puzzle.  A good toolbox to keep all of this in is essential, FPIES kids don't fit in any square box but the corners of Functional Medicine makes a good bag to carry all of this in.   

I continue to look for new tools daily to fill my toolbox(bag) with, to help manage this chronic illness.   . If you need some tools for the journey you are on right now- there is an excellent toolbox filled already with some nuts and bolts (such as an ER letter, articles to bring to your pediatrician to help diagnosis, and food journals,...) here:       The FPIES Foundation

The FPIES Foundation

The FPIES Foundation is here!

"The FPIES Foundation is dedicated to overcoming the challenges of FPIES by offering tools for education, support, and advocacy to empower families and the medical community.... [It] is the collaborative effort of several FPIES families whose relentless journey has sparked the desire to help other families find their way. The FPIES Foundation strives to provide a credible and interactive support resource for this rare, oftentimes isolating diagnosis".

My entries on this blog have slowed down, in part due to my work as one of these families.  I am among the founding families of  The FPIES

The launch is official this week (refer to the press release on the website for details).  And, personally, I am so proud of what we have accomplished thus far, and we have so much more - so many more programs being developed to assist families and the medical community, to provide much needed support, and education.  We will be updating frequently, so check back often!