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, October 10, 2010


We are proceeding with food trials, we have picked a fruit next.  The catch is, it needs to be a low fructose fruit (higher glucose "load"/ratio than fructose) so that lessens our list to choose from.   Plums caught my eye (on the list and in the grocery store).  I have decided that all of his first foods need to be cooked first, in hopes that this will break down the structure enough for his sensitive digestion right now.  It seems to work for some other sensitive FPIES kids as well, so again- going with what I've learned from other FPIES moms in this mom-driven diagnosis.  

We are considering Millet a "pass" for now.  The awake-in-the-middle-of-the-night symptoms we were seeing were from his iron supplement being given too late in the evening (and not enough "food" with it).  So, we have changed his dosing (along with getting a new compound from Walgreens of a better tolerated/tasting iron) and he appears to be tolerating this better.   He will continue getting his millet puffs that he loves so much, but millet porridge (and millet flour cookies) are on the back burner for now and we'll come back to them.   Only time will tell and we have to start somewhere; and we have to press on....

So, the other day- I bought plums.  I washed them, peeled them (just decided I would also not do the peeling right now), chopped them up and boiled them down with some water to a soft mush.   I then put them in the blender.  They were ready for him to "trial".  I let them cool overnight and they were ready.  I also made an attempt at fruit leather with some of the cooked/pureed plums.  It didn't completly turn out but I will try again! 

Saturday morning, I put a few teaspoons in a bowl for him and tried to feed him.  He turned his head away. I swipped his lips with a little "flavor" of it and he smiled, opened his mouth and let me feed him a few bites!!  He was loving it!  Then he started turning his head again.   I got up to make his brothers breakfast, while his daddy stayed beside him at the table, encouraging him.  He picked up his spoon and fed himself!!   

This is EXCITING to see.  Now, I know he is almost 16mo., but with respect to food he is more like a 6mo. old- exploring new foods all over again. He has not had this kind of food, has not had a "diet" for 8mo....and he still remembers/knows what to do!!  AND he LIKES them!!  Puree food that he likes, and fed himself!    We celebrate the little moments around here....Little Man was proud of himself too... 

Day 2 of plums was today, and he ate them well today he let his biggest brother feed him!!  I am not sure who was happier about that- little man or his big brother!  

So far, things are going well.  We've had a few small incidents that are already "muddying" the picture -- some possible bath soap ingestion last night and a crumb ingestion this morning.  We will take tomorrow off (I work and also don't have anymore cooked plums ready) so, we will look to resume Tuesday morning if he continues to do well through the night tonight and tomorrow. 

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