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!
Sunday, April 17, 2011
Sunday, April 3, 2011
Miracles do happen!!
Hi Everyone!!
Well, for those of you who are following Faith's weaning, here is the next step! Good news... we got the results of her MRI back... she has "a lot of viable adrenal tissue!" This in itself is a miracle, as several years ago we were told that her glands were completely calcified and would NEVER, EVER work again, so I shouldn't get my hopes up! HA!! The power of prayer is amazing! We do not know how much of it is working and won't know until we begin weaning her and seeing how she responds. When I spoke to her new local doctor, she told me she really thinks that the weaning is going to work. We are only weaning from cortisol to start. IF that goes well then we will try to take her off florinef. All in all the doctor thinks it will only take about a year or so... that seems like a short time to me, but she is only on 10 mgs right now, so maybe that is a reasonable time frame. I pray that both the inner and outer portions of her adrenals regenerate and begin functioning so that we can take her off the florinef also. But if not, even if the cortisol weaning is the only part that works, that will be fine with me!
Stay tuned for the next episode!! Next week the rest of her bloodwork comes back and once the doctor checks her ACTH levels, she will set us up on a weaning schedule!!
Thanks for tuning in!!
Joy and Faith
Well, for those of you who are following Faith's weaning, here is the next step! Good news... we got the results of her MRI back... she has "a lot of viable adrenal tissue!" This in itself is a miracle, as several years ago we were told that her glands were completely calcified and would NEVER, EVER work again, so I shouldn't get my hopes up! HA!! The power of prayer is amazing! We do not know how much of it is working and won't know until we begin weaning her and seeing how she responds. When I spoke to her new local doctor, she told me she really thinks that the weaning is going to work. We are only weaning from cortisol to start. IF that goes well then we will try to take her off florinef. All in all the doctor thinks it will only take about a year or so... that seems like a short time to me, but she is only on 10 mgs right now, so maybe that is a reasonable time frame. I pray that both the inner and outer portions of her adrenals regenerate and begin functioning so that we can take her off the florinef also. But if not, even if the cortisol weaning is the only part that works, that will be fine with me!
Stay tuned for the next episode!! Next week the rest of her bloodwork comes back and once the doctor checks her ACTH levels, she will set us up on a weaning schedule!!
Thanks for tuning in!!
Joy and Faith
Subscribe to:
Posts (Atom)