Mom's Helping Mom's...

Families helping families...paying it forward.   The online support of moms sharing information, experiences, knowledge gained remains the best place for ongoing, up to date information on this rare illness.  Maybe one day that will change but for now- it remains in our hands.   The biggest online support group, Babycenter,  is a great resource for everyday information, it is where I received so much of my initial training and ongoing knowledge and support.   My first hand experience with my son gave me my own experiences to share, and I added to the moms there, paying it forward.  I haven't been as active in that group lately, but that's ok because moms continue to pay it forward; new moms that started their journey in the same places we all do- lost, confused, alone, looking for answers, moms who take the information shared and process it and make steps to build on for the next mom coming along, where in turn that mom does the same thing.  It is a wonderful thing to see happening with such a rare, complex, and often isolating diagnosis.   These communities of support are also on Facebook and Kids with Food Allergies (KFA). 

As I learned, and carried forward my experiences to share, and then learned some more; I began to see the need to organize some of this information more (in more places than just our ever-tired mommy heads!) and began to formulate how to put it all together.  I tried to put posts of my research on my blog, started with Allergy Nutrition.  And then, Little man's illness became complex and my time was devoted to caring for him, so this was just a project that got put on the back burner.  And I continued to put my research on my blog, but have not put as many updates on how Little Man is doing, simply.  So, I have continued to work on putting together information as I research it (much of it already displayed here on this blog); but have decided that a new blog will be a good place to organize this information....to pay it forward...to become a resource of information compiled to pass along for a new family, or a vetren family needing clarity on something like Non-IgE food allergies or oral tolerance mechanisms.   This is a very complex diagnosis, I am merely learning alongside the other moms- learning as we go along.   Through searching for answers for my son, researching this illness has made me driven, driven to keep searching for help for my son, and driven to help others along the way with this information- if I can.  

The new blog is here: My FPIES File Cabinet.  This FPIES Mudpies blog will remain active for updates specific to Little Man, his FPIES and our families journey through it (which I think my non-FPIES family and friends will appreciate!).   I will reference my file cabinet, if/when I have research that I have done to share- it may benefit another FPIES family, it may not apply to their journey but the information will be there, where I can reference it when needed as I continue to research as much of this diagnosis I can to turn over every piece I can to solve my Little Man's puzzle. 

My FPIES Toolbox...

This FPIES puzzle is so big, I rely on my toolbox to help me with the pieces.   Every once in awhile, a piece will come loose, or fall out, or need gluing - or a good hammering, to stay in place. 

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 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, ours has become Dr.Jyonouchi's research and her published articles on Non-IgE food allergy are starting 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.   

We need this toolbox because each of our children are different, the FPIES mechanisms may be the same base but how we carried them, their birth experience and exposures, breast fed or formula fed, first food exposures, vaccines, environmental toxins....all change the FPIES puzzle enough for each child that without a toolbox full of useful tools, we will be lost.  

I continue to look for new tools daily to fill my toolbox(bag) with.  The research at FPIES United Family Fund will be one my next stops!