Ok, so we got the last of Faith's bloodwork back and her ACTH is just a tiny bit on the high side... just over normal. Her local endo said she is still optimistic that we can wean her without any trouble. Most other times her ACTH has been very high. This is the first ACTH test I recall having since they discovered her glands were regenerating and growing and the fact that her ACTH is down from what it normally is is a good thing! That tells me her glands are working to an extent, right? She is on a very low dose of steroids, so her ACTH being lower is an indicator that she is getting ALMOST enough cortisol... does this make sense to anyone else but me!?!?
Anyway, because I have such little faith in the nurse at Faith's school, we have decided to wait until summer to begin the weaning process. I do not trust that she will be able to recognize symptoms, or even treat Faith with enough common sense to keep her safe. And the last thing I need is for her to go into a crisis just when we start the weaning process. ANd the school nurse is definitely lacking in observational skills as well as common sense....only six weeks till school is out and then we begin!!! I am so excited, though frustrated that we must wait to begin... but, better safe than sorry. I will feel much better keeping an eye on her myself when the process of taking her off steroids begins!!
Wish us luck!
Joy and Faith!
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