Initial scope findings showed inflammation in the stomach and duodenum, similar to how it has looked in the past. Colonscopy was clear, despite having continued blood in stools. We would wait for the biopsy results to assess more but initial findings were concerning for the course we have been on. What could be causing this? My mind races to the fails he has had recently, to the new things in his diet, to a darned if you do, darned if you don’t place in the road.
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.
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