We saw the endocrinologist this morning over in Springfield. She seems nice and was willing to learn more about PBD-ZSD and consult with Dr. Raymond, the PBD-ZSD expert, which is always a good thing in my mind. While Ethan is of course her first PBD-ZSD kid, she sees kids that have adrenal issues for lots of reasons, so I think we'll be in good hands.
We left with a prescription for cortef to be used for stress dosing if Ethan gets sick before we do more tests to determine if he needs a daily dose. She is going to touch base with Dr. Raymond him before ordering the next test to double check levels and make recommendations from there. We were in agreement that we have to get this taken care of before his sedated ABR and MRI in November because anaesthesia is a major stress on the body and that Ethan should be stress dosed for the procedure to do all that we can do to avoid an adrenal crisis. So, the issue hasn't be fully addressed yet, but a plan is in place, which makes me feel much better.
Thank you for your continued prayers!
Update
Dr. Green is amazing! She called me personally, not her nurse, to say she had already been in touch with Dr. Raymond (our appointment was this morning at 9am) and they have a plan. We'll do another ACTH and Cortisol draw on Monday morning here in Decatur. Once she get the results we'll either continue with stress dosing for illness or we'll go on a daily maintenance dose.
We left with a prescription for cortef to be used for stress dosing if Ethan gets sick before we do more tests to determine if he needs a daily dose. She is going to touch base with Dr. Raymond him before ordering the next test to double check levels and make recommendations from there. We were in agreement that we have to get this taken care of before his sedated ABR and MRI in November because anaesthesia is a major stress on the body and that Ethan should be stress dosed for the procedure to do all that we can do to avoid an adrenal crisis. So, the issue hasn't be fully addressed yet, but a plan is in place, which makes me feel much better.
Thank you for your continued prayers!
Update
Dr. Green is amazing! She called me personally, not her nurse, to say she had already been in touch with Dr. Raymond (our appointment was this morning at 9am) and they have a plan. We'll do another ACTH and Cortisol draw on Monday morning here in Decatur. Once she get the results we'll either continue with stress dosing for illness or we'll go on a daily maintenance dose.
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