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, July 26, 2011
Our GI doctor is perplexed and will discuss things further with us when we get biopsy results back. I e-mailed Dr.J for her insights to which she replies how, from their studies, she is beginning to find how there are two sets of FPIES kids- ones who respond to the elemental/elimination diet and ones who do not, whose immune systems are different. This makes a lot of sense for what we see among FPIES kids- those that are typical and classic and those that are atypical and then a spectrum in between- which equates to a lot of variables in reactions, there must be just as many variables in treatments.
I have said for months that we need to do individualized treatment, think outside of the box, follow Little man’s signs and symptoms to find his path to healing. With the biopsy results still pending, we head to see an MD trained in Functional medicine, to explore this path to healing. The consult could not have come soon enough as clearly we need a different path to heal Little man and help him thrive.