I have been contemplating whether or not to post the most recent update on Ethans health. Ugh. I so dont really know what I am talking about, but I will try. I am NOT convinced that, endocrinology wise, this is all that is going on. I really do think I am going to request one more test...but, in the meantime...he has been diagnosed with adrenal insufficiency, aka Addisons Disease. Basically, I am told that in his case, it boils down to the adrenal cortex misbehaving. Even after receiving the ACTH stimulation test, to stimulate his cortisol, his cortisol levels fell. The adrenal glands pretty much communicate with every organ in your body, so this sounds a bit inconveniencing and somewhat unhealthy!. Because he can make a little cortisol, we do not have to give daily steroid doses, but if he gets sick or super stressed, we will have to begin that. If he gets into a super stressful situation, as in a broken bone, car accident, unconscious, seizure, surgery, marathon, etc, we have to administer the steroid into the muscle, then proceed to call 911 or head to the emergency department. If any stressful situation is not tended to properly, he could end up in what is called an Addisonian crisis, which can be fatal. My concern is recognizing what a stressful situation is in daily life, and what symptoms we might see. I guess I will be doing some research. In about 3 weeks, we will be meeting with the geneticist...wonder what she will have found that might help us understand what is going on. IN the meantime, Ethan has his second, and hopefully final, eye surgery...Dec. 4th. The office policy is to have the account paid in full prior to the second surgery, but because insurance threw an unforeseen wrench into things, the doctor has chosen to move ahead on the second surgery....even though we owe thousands for the first one. The first surgery created more of a ptosis situation, which was the goal...but his eyes cant be left that way, as it has impeded his vision even more so. Overall, all the issues from months passed still exist, but he is dealing with them much better. He even chose to go out and play a bit of soccer with his team, as he had to sit out all season. I will post more later.
Posted on: Sat, 23 Nov 2013 23:16:06 +0000
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