I mentioned in my other thread that A's biopsy report stated "small intestinal mucosa with focal lymphangiectasia". I seriously cannot even pronounce that, lol. I wanted to start a new thread with the hope that someone somewhere who has experience with this will chime in. CarolinAlaska I also thought of your daughter when reading about this. A's follow-up appointment is next week and I want to be prepared with arguments (if this gets blown off as a variant of normal....our kind of luck) and questions (if this becomes a new diagnosis).
In my reading I keep finding that a diet low in fat but high in protein should be followed. TPN and EEN is often used, especially at diagnosis. Are the formulas you use low in long-chain-fatty-acids? I tried to find a list of acceptable/exempt foods but was unable to. At the very least I'd like to try this diet to see how it works for her.
I'm at one of those points where I can't stop reading and searching for info. This just sounds so much like A that it is incredible. And the saying, "A worried mother does better research than the FBI" keeps popping into my head and making me chuckle because it is so true.
In my reading I keep finding that a diet low in fat but high in protein should be followed. TPN and EEN is often used, especially at diagnosis. Are the formulas you use low in long-chain-fatty-acids? I tried to find a list of acceptable/exempt foods but was unable to. At the very least I'd like to try this diet to see how it works for her.
I'm at one of those points where I can't stop reading and searching for info. This just sounds so much like A that it is incredible. And the saying, "A worried mother does better research than the FBI" keeps popping into my head and making me chuckle because it is so true.