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."

Thursday, August 19, 2010

Millet Trial, day 3

No, you didn't miss a post. Day 2 was a day off (from millet). Little Man had too many loose stools from the millet grits, his system needed a break. This is an added component of Little Man's FPIES. He isn't the only one with it, our RD at CHOP is the one who alerted me to it. His scope confirms what we already knew: he has a carbohydrate intolerance. He can not fully digest the same amount of carbohydrates as other kids his age (FPIES or not), so if he gets over his "load" - his body will let it out in explosive diarrhea.
Mudpie #2 (aka 2nd son) has lactose intolerance that developed last year. I connected his issues down to milk (lactose=milk sugar). There isn't many non-invasive tests for a lactose intolerance diagnosis confirmation. So I relied on the tried and true elimination and reintroduction process. I pulled out all milk from his diet without him noticing for a week or so, and then I tested it with a nice big glass of milk one afternoon and sure enough, he was running to the bathroom. I asked him if he was having cramps- being six, he didn't know what cramps meant so he described to me..."it feels like firecrackers going off right here(pointing to his lower abdomen)". He has a way with words! And I couldn't think of a better way to describe it. Off to the store to buy lactaid pills and milk and problem solved. He doesn't have any of those bathroom trips if he takes his lactaid or drinks the lactaid treated milk. Lactose intolerance is the easy one of the carbohydrate intolerance's to fix. Although some people do have it so severe- they can't have any lactose in their diet, even with the help of lactaid...but I digress. Lactose intolerance is what most people are familiar with since it is the most common of the carbohydrate intolerances. It is the same result, from any of the different carbohydrates (milk sugar, starch sugar, fruit sugar....) for someone with a generalized carbohydrate intolerance like Little Man.
Firecrackers is what Little man was having- but he didn't even mind. He had some initital tummy upset from the Millet grits but never did have any issues after that; although the diarrhea continued all day and night and into yesterday with one loose diaper. Yesterday we didn't give him any millet.

Today? Today he had a COMPLETELY NORMAL BABY POO diaper!! If you're an FPIES mommy reading this- you're giggling...I know you are! If you're not an FPIES mommy, you're wondering why the extra excitement over poo! FPIES ravages their entire digestion, normal poo's are not their normal....unless things are right in their world! I have 4 boys - Little Man is #4. And I have changed many poo diapers in my life even before them - I have done daycare, I have babysat, I started changing diapers when I was 9yrs old (since I am #2 of 7 children it was par for the course)....I have never, never seen such a range of weird poo as I have from one child- from my Little Man.

So, today- millet puffs arrived (thanks M!!!) and we continue with millet trial. I "cooked" them with some hemp milk into a cereal and he ate some just puff plain. He LOVES them!! We will do this same amount for the next few days and then look to increase it as we go. I am still holding out hope that this will be the wrench in this viscous cycle of a ferris wheel ride ON this FPIES roller coaster ride!

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