Awhile back I mentioned that my newest grand daughter might have reflux—well, her problems ended up being far more serious. Our sweet little Scarlet has septo-optic dysplasia, cerebral colosum hypoplasia, and diabetes insipidis. It appears at this time that she is blind. Her optic nerves are about 1/4 the size they should be and she is missing the part of the brain that controls vison. She has hypopituitarism, but so far the only thing being affected is her ADH. I think they feel she will lose other hormones over time. I also have hypopituitarism–but I wasn’t born with mine.
If she should get any vision later, it would be because her brain would manage to find a “new route” for vision—which would most likely be only shadows or colors.
She has had problems keeping her sodium and potassium at safe levels.
She has been put on a g-tube for feeding, and has stopped all oral feeding. She also hs to have water put in her tube after she is given her formula. She is supposed to be fed every 3 hours.
She has started throwing up massive amounts several times a day. She is on omeprazole.
I know nothing about tube feeding, we managed to avid the g-tube twice with Sylvia.
My daughter-in-law has started to try spacing her feedings to 4 hours apart to see if it would help her throw up less.
Does anyone know why she would be throwing up such large amounts with tube feeding?
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