I will admit I do dream of waking up and Kaden's HCU being cured. I do "pretend" that he is perfectly normal and has nothing wrong with him and then meal time comes around and slaps me awake.
It maybe my "denial" but I've been wondering if his Dr jumped to the conclusion that Kaden is not b6 responsive to quickly. Some people with HCU are b6 responsive. This means that they just need to take vitamin b6 to have good levels and can usually have a more liberal diet (no meat and cheese, but breads and pasta are OK). When the doctor saw his levels go down 3 months in a row, he asked us if we want to lower one of his meds (betaine) or up his protein. I of course wanted to increase his diet. More food = GOOD!! Betaine is just a powder I put in his formula. Easy to give, gets ride of the bad stuff (homocystine) in his body, and Kaden doesn't mind it. This suggestion got me thinking about the Dr possibly over treating him. Does he really need ALL the meds for good levels? Is Kaden's body getting better at processing methionine (protein)? This just got me thinking.....
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