We had a follow up appointment with Robby's Neurologist on Monday. Things are not looking favorable, as he has been on such a high dose of prednisone for far to long. We had just finished the taper a week before Christmas and he is spilling protein again just a week later witch means his body is not responding to the suppression and as soon as he stops meds his immune system attacks again. Prednisone dependent.
So next course of action, back on the pred. and as soon as his body starts to respond starting another medication, Prograf. ( trust me, don't read about it) this is one of the drugs that is given to suppress the immune system in transplant patients. The goal is to keep his immune system down and give his body a good long break from the steroids, and hopefully as he goes through puberty his immune system can get a clue of how it's suppose to work. we are looking at at least a year on this new medication.
Am I scared? You bet. Robby was diagnosed with Nephritic Syndrome in 2005, it's been up and down since with the longest remission being 18 months after a 8 week coarse of cytoxen.(also not great reading material). i cry most every day, in fear and frustration.
Robby is such a great kid. so kind and wise beyond his years, we don't talk a lot about the "what ifs" of side affects the medications can cause. I don't feel like that's something a kid should have to worry about. He said yesterday, maybe I should have another Priesthood blessing? The kid amazes me, he has so much faith.
1 week ago