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, January 25, 2011

Millet is a Mystery...

With all the weird symptoms we see with millet- I am ready to call it a "fail" these days but with biopsy results findings of zero inflammation- I am not sure if we are seeing a build to FPIES vs. an intolerance vs. his gut just isn't ready for a grain- even if just a pseudo grain.  I've trialed it and retrialed it so many times and looking back at my logs- all similar symptoms were there- and just kept building with each re-introduction. Although never indicating FPIES vomit/diarrhea. This fits in his delayed/build intolerance's....if we kept pushing it- would it eventually land us another FPIES class trigger food? I don't know. But here are my thoughts on what may be going on:

1. Delayed reactions:  he has always had, what we coined a long time ago as, his "honeymoon" period- he would do ok on something and then it would build and hit!

2. Constant re-exposure to a common-related proteins (also trace and cross contamination of trigger proteins) can result in chronic FPIES.

3.  If we press it- would everything related to his triggers eventually be unsafe.  Millet is in the "cereals/grains" category- but it is a seed, so a pseudo-grain. But is it closely enough related to the other grains his body has FPIES triggers to (corn)?  Rice is one of his  But he did not have an acute reaction to rice when we started solids, he had throwing up reactions to reintroduction of rice (after stopping it and trying oatmeal to see if I could get him to eat it better) but after taking a 3mo.break from all food and reintroducing food starting with a dozen rice puffs and getting violent vomiting did we consider it an FPIES trigger.   Also happened with dairy and soy- soy is not a clear FPIES trigger but his body was not accepting it- but it was a slower (delayed) process. Will this be the same with so many foods for him? Is it why hemp is safe, and arrowroot- as they are in their own families and unrelated to the proteins his body perceives as a threat?

How do we get past here?  How do we get off this wheel?  What do we trial next?  He has oral aversions so he doesn't want to eat just anything, but he has been reaching and begging (tantrums really) for our food.  We again, battle every mealtime, every time his brothers eat and he can't, every time I cook and he can't help is torture for a mom to endure.    I just want to feed my little boy!

So, millet remains a mystery but is it teaching us something too?  For now, I have put it on the "see you later" list.   We may have already gone too far with it.  But, we'll look to retrial it again when we have more safe foods in his diet; see if we can't find a dosage that he can tolerate without symptoms -- symptoms that disrupt sleep and cause stomach aches and weird diapers, symptoms that are worrisome for building a full blown reaction.  How do we avoid these build reactions?  My thoughts keep going to a rotation diet....


  1. Joy, I am so glad I found your blog. I am excited to follow it as well as try to connect with other Mom's of kiddos with Fpies. I am a mommy of four as well. My son has an extensive hx, of aspirating, fundo and G-tube surgery, failure to thrive and now I need to update my blog with this new Pfies diagnosis. We are about to start our journey to figure out what things our boy is sensitive too. I have done some reading on the rotation type diet and I think eventually, that might be something we will try, once we know what the definate triggers are. I think eventually, once the gut has healed a bit and the child has had some time off of foods, then they can possibly be introduced back in on a three day rotation basis. It will be interesting to see how all of this looks. I am curious how you make your own formula with Hemp, the doctors want us to try Neocate, but after reading your post about the corn I am a bit hesitant. Any info you have would be helpful. Thank you!

  2. Kristina- I posted on your blog....may I link your blog on mine? I'm glad you found my blog too. Can I connect you with a mom here in MN who may share experiences? G-tube, Fpies...etc....??