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."
Monday, May 30, 2011
Processing through probiotics....
A quick recap: initial changes were increased appetite and “die off” or upregulation of his immune system changes. Gut flora is a large piece of our immune system. Much research has been done in recent years as to how much the gut impacts our immunity. Probiotics help the resident gut flora to thrive, strengthening their numbers and power and thus, in turn diminishing the “bad” gut flora strength and numbers. Keeping our gut flora in homeostasis influences all systems in the body for proper health. It becomes more obvious just how out of homeostasis Little Man’s flora was as we work our way through the probiotics.
Once the gut flora was adjusted to the daily probiotic, we began to see a plateau effect, and experimented with higher does, more doses per day, and even added probiotic strains. Added strains were too much on his system at this time (too much upregulation on an over-reactive immune system?), Higher dosage was too much on his system, and more doses throughout the day were helping and although he loves the taste of his probiotic, he was starting to tire of the medicine cup routine. He couldn’t handle increased dosage but he could handle increased dosage times. This is when I got the idea to add it to his formula mix so that there was little doses multiple times per day. He loves the taste of it, it increases his appetite- both reasons to drink more formula and maintain or gain more weight.
Beyond increased appetite and resultant weight gain, we have noticed better sleep, better mood and hopefully what looks to be a slowing down at least of his vicious cycle. The vicious cycle we’ve been trapped in for so many months, with probiotics, he re-coops after a reaction easier, he bounces back better, he experiences less build symptoms. But, miss a few probiotic doses and we notice what even looks like reaction build symptoms.
Is this a clue into his build symptoms? Another piece to his puzzle? We have found out where his cytokine “break” is- in his candida responses and in his Th17 responses….both tied to the GALT and gut flora. So, when he begins to take in a food and his body is not properly digesting it, the food byproducts begin to impact his gut flora, which in turn cause his body to attack itself and build up more “bad” gut flora (yeasts), which in turn makes his gut “leaky” which results in the undigested proteins crossing over into the lymph system and signaling the cascade of cytokine responses for the body to respond to this perceived toxin. His gut flora is causing his atypical FPIES responses? His gut flora is directing his Th17 responses which drive his Th1 responses to attack. Are we closer to the bottom of this puzzle so we can start rebuilding it again?