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, May 10, 2011
As I look over my notes, the logs I keep for Little Man, it becomes more obvious of why his FPIES is so complex. We are trapped in one vicious cycle after another. The key to unlocking his aytpical FPIES will be in stopping his vicious cycle. But how?
His complexities lie in his Th17 responses. A response that is not completely understood, and currently is not even studied in relation to FPIES (it is that "new" of a discovered mechanism). It is exciting to see that there may be an explanation behind his atypical FPIES but without more knowledge- there is little to do with this information....except more research....by me. Another critical component of his FPIES is ongoing anemia. My instincts say there is a tie-in to his severe gut dysbiosis and his anemia. Iron is absorbed primarily in the small intestine. Frequently, those with inflammatory bowel disorders can have anemia as a co-existing condition. Little man has had chronic inflammation many months of his life, and chronic gut dysbiosis probably all of his life. We simply can not get ahead of his vicious cycle without knowing more of his mechanisms. And yet, we need to make decisions about what to do next, what to trial next, what best way to treat his anemia, or his reaction symptoms.
Following IM Rochephin antibiotic, little man had his all too familiar pain attacks. A trip back to the pediatrician to check on his ears (the reason for the antibiotic) and they were healing well, no signs of infection. This confirms that his familiar pains are that of his stomach aches. I had the thought to add the probiotic to each bottle, after finding out on the stool studies that he has no growth of lactobaccilli detected in his stools. That information, coupled with trialing the lactobaccilli probiotic, and seeing a plateau affect. This seems to have really helped. But then quickly discovered that after ~24hrs, the probiotic was fermenting in the formula (actually a good thing- creating Kefir without realizing it) and was not a taste Little Man was interested much in. He does enjoy the taste of the probiotic, has since we started it- just not of it fermenting! I have worked through a few changes in my formula recipe and making and again improved on his formula- fitting his specific needs.
We now notice significantly less crampy pain that has often become a chronic part of Little Man's cycle. Is this the affect from the antibiotic or from the increase in the probiotic? Or is it a combination of both? Will he be able to tolerate more foods finally?
We are hopeful, until....