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, August 17, 2010

Millet Trial, day 1

This morning marks our first trial for Millet- our attempt to get Little Man a grain, even if it is a pseudo-grain. He needs the extra carbohydrates in his day because he can only tolerate small amounts throughout the day but being a growing little toddler - he can't go without completely (carbohydrate intolerance or not). Millet is our hope. Our hope to give him a carbohydrate, a grain, a versatile food source (flour, puffs, grits, seeds, flat bread, pop-millet....) for a base of his tiny menu.
Well, I can't say the day went without a hitch. I made up a small bowl of this millet grits, tasted it myself- hmmm, a bit like corn cake. We are lucky that Little Man has no oral/food aversions as of yet. I'd like to keep it that way so forcing him to eat something is not going to be a part of food trials. He would not let me spoon feed him. So, in the bowl went about a tablespoon of grits- give him a spoon and watch to see that he eats about a teaspoonful and then stop him. Gee, sounds like fun? Well, thankfully he took two small bites and then started playing, so I used that opportunity to be done. Thankfully....
The pain started about an hour later, the SCREAMING lasted for about an hour and then he finally took some more hemp milk formula and settled down. And then he played, and played and played all morning....until- the report from Mudpies comes in...."Little Man stinks mom, and we heard it too, it exploded". Uh-oh....but he's not crying? Reaction poo for little man can be acidic and he lets us know the split second it hits his bottom. But nope- playing in the sandbox like nothing is going on. Sitting on the changing table tells a more worrisome story. Mucous, lots of it; and all loose. I had held him a little bit a few minutes earlier and I could feel the gas bubbles digesting. This is not FPIES trigger, I feel this is his carbohydrate intolerance and the almost 2tsp he ate this morning gave him 8grams of carbohydrate....apparently too much for his body to digest at one time.
With a carbohydrate intolerance (that we assume is secondary to his FPIES), Little Man doesn't have (or release/produce) sufficient enzymes in his small intestine to breakdown all the sugars in the carbohydrates that he eats, so then those go into his large intestine undigested and not recognized by the large intestine that is supposed to only be handling digested foods and the gassy cramps can be pretty painful and then it causes diarrhea.

After this first diaper, he settled down nicely with a bottle for a nap and even took a really long one! He woke up and played outside again (he LOVES to be outside!). But then he had another diaper of diarrhea. So, I am a little concerned as diarrhea is what lead up to him getting sick and ending up in the hospital a month ago. But I am hopeful we are staying on top of it. He has been drinking his formula like a champ and although he screamed for that hour this morning- he otherwise was pretty good all day and settled down easily for bed tonight.

Stay tuned as we will press on tomorrow! We will give him less, or change to Millet puffs and see if that goes better.

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