Does anyone have any experience with these? A bit of history. . . DS is 4.5 years with a complicated medical history (seizures, dev delay, g-j tube). His main dx is mitochondrial disease. He is currently on the ketogenic diet. He is a happy boy when we are resting his gut with pedialyte, but when we reintroduce his formula (which he has tolerated well before about a month ago) he gets gaggy and lots of air drains from his g-tube. He is fed exclusively through his j-tube because using his g-tube creates all sorts of discomfort.
Someone that I know, with a child with mito, said that they used digestive enzymes. I know that there is more elemental formula that we can use, but that means that we would need to discontinue the keto diet, I think. I think this is just the nature of the beast in regard to mitochondrial disease. We've seen a slow decline in his GI system over the last two years especially.
Has anyone used these? Any opinions? Thanks a bunch in advance!
Someone that I know, with a child with mito, said that they used digestive enzymes. I know that there is more elemental formula that we can use, but that means that we would need to discontinue the keto diet, I think. I think this is just the nature of the beast in regard to mitochondrial disease. We've seen a slow decline in his GI system over the last two years especially.
Has anyone used these? Any opinions? Thanks a bunch in advance!
with gagging/belching/vomiting/reflux/slow down of his system. We're still not where we were pre-dx. but we're close I think and he is again failure to thrive. I feel the breaking down has to help but they can't compensate for major decline, you know? His geneticist (mito specialist/mito clinic in Indianapolis) told me that he's seen a number of kids with mito whose digestive system struggles like those kids with CF and they do better on pancreatic enzymes. That is our likely next step here if we continue failure to thrive.
