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."

Sunday, February 24, 2013

Remember being new to FPIES?

Do you remember being new to FPIES?  I do. Our son wasn't diagnosed until he was just shy of his 1st birthday, and those months prior were some of the longest, most stressful and anxiety filled months we have endured.  Little Man is now 3.5yrs.old, FPIES is no longer a new diagnosis. We are versed in the changes that we needed to make to keep him safe, to learn about his allergies, to trial foods, and get support, to help friends and family understand and support us by respecting our sons needs. FPIES is still a big part of our Little Man's daily life as although his list of safe foods is growing,  his list of avoiding foods is still long enough.  

Recently, Little Man and our family got to meet another FPIES family who were in town receiving some further consults on their son's complex FPIES.  Their son has no known foods he can tolerate at this point. He survives, and thrives on an elemental formula for his sole nutrition. He is 3.5yrs. old, just a few months younger than Little Man. They were instant friends. They both noticed right away that they shared 'bobbles' (they both said bottle in the same cute way!).  And although it wasn't a big part of our meeting, they did both recognize that they shared "food makes my tummy hurt"'; which may not seem like a 'happy' thing to share- it is their reality, so having others to share that with is important for them.  

Little man has met other little friends with FPIES, but Little Michael had not. Little Michael had only recently even received the FPIES diagnosis (just before he turned 3yrs). His family had been managing his allergies under "multiple food protein intolerances" and since he was thriving on elemental formula since 4mo.old, and no one knew why food caused the symptoms they did- they were alone.  They were alone in trialing foods, alone in keeping him safe, alone in trying to have others understand, and explain to their growing son why he couldn't have food, they tried foods here and there- hoping and praying each time that they could find something that didn't cause excessive and irrational screaming, violent vomiting and days of diarrhea....not to mention how some foods also caused edema-like swelling and hospital stays. 

So, what would you say to you if you could go back to those first months of the diagnosis? What things helped you understand the most about FPIES?  What helped you cope? What helped you with food trials? What helped you help family and friends understand the magnitude of this allergy? What things helped you feel less alone?  

 These two boys share so much, and they knew it. 


  1. We have just been diagnosed with FPIES. I feel like Iam drowning in a sea of uncertainty. My son is 8 months old and has the very scary acute reactions to oats. We have no known safe foods yet but he is EBF. We found out about FPIES because I googled, "why does my baby vomit after eating oats?" We had already had two acute reactions and the doctors kept telling me it was a virus, I had even asked them if it could be the oats. So I turned to Google search as my son started into. his third acute reaction. I was able to educate the er doctors that day, after showing them the info they felt it had to be an FPIES reaction. This is such a scary place to be in this journey, not knowing if the food on the spoon will poison his little body. How do you protect them from the unknown. I feel like I am fighting a cowardly monster that won't show his face and fight fair. I have for other children that eat I live in fear of unseen dropped food that might be found by our newly mobile little one . I know time will bring clarity but I fear the means needed to achieve it. Thank you for your blog, there is such peace in seeing what others have overcome.


  2. I don't know how much help I can offer as we are still awaiting a formal diagnoses. We have been to 9 doctors and moved to another state. We finally have an allergist in seattle (dr Kevin dooms) and a GI doc (dr Jonah Essers) working with us. All I can say is that I've kept am eye on my son like a hawk. I follow the kids with a DustBuster and nobody is allowed to eat outside if the kitchen or unsupervised. We are starting to label food containers and cups so the babies start getting used to "my cup, my sippy", and eliminating many "poison" foods. Oatmeal is out for good and rice meals are rare and include a ceremony before dinner "everyone, we are eating rice! Keep it away from little man!"
    New food trials include us calling the allergist the morning of the trial and we are keeping a dose of prednisone handy for the next reaction. He goes to the hospital next time. He vomits for 1-2 weeks. :(

  3. I forgot I mention that I am also keeping away from daycares and situations where my child could be around uneducated caregivers with food. And I am learning about paleo cooking which usually has recipes with safe foods.
    I'm learning that seeds and nuts have a high probability of success.
    Go to google and search for FPIES survey. There's a mom blogger who started a survey to see which foods other kids have had reactions to. This is better than any medical info right now because there just isn't any.
    Use that and recent medical journal articles including Dr.kirsi m jarvinen to help guide your doctor. You'll have to use moms as support and get as educated as possible.
    When testing foods, use a very small amount like 4-6oz of liquid or an apple slice size. Then wait... Up to 48 hours and try again. If still no reaction, you should be in the clear. Just don't get too confident or lackadaisical, you never know what could change in your child or in a companies way of processing food.