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."
Friday, July 29, 2011
Our GI called to fill us in on the biospy results from his endoscopy procedure. The colonscopy results had already been back and were clear. We haven't even discussed further what the blood in his diapers is from. He had a diaper about a week prior with all blood- no stool, just blood. I consulted her about and she speculated it was a fissure she had visualized on a scope a few months back- but still puzzling why he is having so much trouble with fissures. Is it part of his FPIES? Part of just his body?
We already saw the pictures from the biopsy, so we knew the results would not be good...there is inflammation in his stomach and upper intestines. His esophagus looks great though (so what is the irritation in his stomach from?).
Well, now the final pathology report was in. The initial findings did confirm villous blunting (damage to his small intestine lining from the inflammation)
It is becoming more evident that Little Man is one that is prone to villous blunting, it is noted in the studies and research but we don't hear of it as being so problematic as it has for him. More than likely his restricted diet is a piece of that; another piece is the assault his intestines endured for months while we searched for a diagnosis. We feel his gut flora is really off set and that contributes a lot to the body not functioning properly. A vicious cycle...
There was some extra time taken to these sets of biopsy. First, because our GI had the path lab pull his old slides and contrast and compare, we got some answers with that. The next thing they were taking a close look at was aanalyzing the stomach inflammation. It appeared to be inflammation from an infectious source but all the tests were coming up negative for infections. They finally found something and it was a piece of wood fiber?!! Well, he does suck on wood a lot! But seriously?? Our GI then asked them to further analyze his intestinal biopsy's as well, deeper cuts into the layers- looking for auto-immune cells, auto-antibody cells, and other inflammatory markers, as well as eosinophils. The good news is that there is NONE of that! From this angle, he is healthy! Even the villi are strong underneath the surface! This is good news. It is more and more hopeful that we can get control of this beast of FPIES...narrowing down the mechanisms that it isn't from.
But it also tells us we need to look further into what may be causing it to be so complex in him. We just want a tiny menu- why can't we get any new foods, to the point that recently we started questioning if even his safe foods are ok??
We discuss next steps. TPN (parental nutrition- IV) again and/or steroids. Dr.J (research doctor in NJ) had recommended them as well but we weren't ready to try them with him- for fear of him reacting to, or having side effects, from them (the drug itself or the additives) and setting him back or potentially making him really, really sick. But, we're getting closer to just needing to try something like that. He isn't improving with all our other efforts. We need to start thinking about it. The GI discusses a few options: we could just try the steroids now and see if that heals him (without TPN being that his villi aren't as damaged as they were in Dec.), or we could do TPN for optimal nutrition, and then add the steroid with that (via IV). We are to think about it, knowing how hard this could be on him, how hard hospital stays are on us all; but how much he needs something to give.
I begin to think about it, no TPN? Really? Could it be this "easy"? But we do not know how he will tolerate the steroids, and he's already all inflamed and declining by the day? That is a big risk to take, when we know he would benefit from the IV nutrition and get back to a baseline of no intestinal inflammation- so that then the steroid can work on his immune system and not just healing the intestinal damage. But I also feel the probiotic will be crucial for his immune system as well. All 3 (TPN, steroid, probiotic), Dr.J has recommended to look at for Little man. Maybe this will be it? The time we get ahead of his dysregulated gut and immune system? We watch as he is going downhill and not getting better, we feel he would benefit from the TPN. We decide to give it some further thought, if we do TPN; we could also work through this new probiotic while also deciding on best time to trial the steroid. It's a lot to think about on my own.