Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Tuesday, March 15, 2011

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 pay it 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. 


  1. What a great idea!!! Looking forward to sitting down with the filing cabinet one of these nights and getting caught up, or at least trying to!!

  2. Joy you are AMAZING. What a wonderful resource you have put together!!!! Can you imagine if you had something so organized and useful when you first noticed Sam was not well?

  3. Thanks Heather- and there in lies the reason...if we had only had a clue what was wrong with him....

    Thanks Rebecca- it's just something I've been wanting to do adn the OCD in me is relieved to have the organization! :)

  4. Joy - I absolutely LOVE this. Thank you for always remembering to pay it forward! Thank you for taking your time and resources to help families like mine. This is awesome!