Kito update: Kitos doctor doesnt think we should hospitalize him YET because Im making *some* progress with interventions at home AND, she knows the local hospitals arent equipped to deal with the complexity of his multiple rare medical conditions. I spoke to his endocrinologist at Doernbechers Childrens Hospital (2 hrs away & where Ill take him if he needs to be hospitalized) &, aside from some minor med adjustments, shes as baffled as has regular doctor. Im going to work on referrals for a GI guy up there. Thanks for the MANY suggestions re diet, I of appreciate your kindness, compassion & know your intentions are good. If you only knew how many special diets weve tried! His best results have been from eating simple traditional Japanese diet of onigiri (rice & seaweed), wild salmon, organic miso soup & tofu, eggs, mushrooms & sesame/salmon furikake. Occasionally I can get him to eat watermelon. His diet is limited, but Its NOT diet causing the problem. In fact, now hes not eating AT ALL. (He had a rice & fish ball Friday afternoon & three eggs on Sunday). One of THE major issues is chronic dehydration related to his having diabetes insipidus, the heat, a recent round of antibiotics (yes, I gave him probiotics with it) & his body s inability to regulate it, all of which is exacerbated by his refusing to drink enough fluids when hes not feeling well so the problem quickly snowballs out of control. When its bad, like it is now, he completely shuts down, he cannot communicate & if I try to force fluids (press him to drink), hell expend what little energy he has fighting it. So instead, while hes lying down, I dribble tiny bits of ice from our electric snow cone machine into his slightly open mouth to melt, eventually he starts responding by parting his lips for more & sometimes itll stimulate him enough that hell start to chew it. Today I put a little syrup in it, which he seemed to respond to. Later Im going to try watered down honey on it. So, its ice & cannabis oil around the clock until hes either pulling out of it or must be hospitalized. Im doing my best & so is he. Thank you for your thoughts & prayers!
Posted on: Tue, 26 Aug 2014 02:22:31 +0000