MacarenaI’m very concerned to hear what you are saying. I was always on the impression that the doses where on the low end according to his height and weight (0.7 per m2). I’ve been pushing my pediatrician all the way in that direction.
As the endo believes he doesn’t have CAH he wants to remove all the meds progressively. He has reduced HC to 5 mgs, Florinef to 0,025 and eliminated the salt suplement. The problem is that we are now going to Denmark for three weeks and I’m a bit uneasy to start changing things away from my area of influence! Anyway, we will follow the endo’s recommendation and try to do some blood checks while we are there.
Next steps are that we will try to repeat the genetic study in Denmark. We will take some DNA samples with us next week. When we are back in January, the endo suggests that we continue with the meds reduction until we remove them completely and then start doing the necesary tests to get a diagnostic. He says he cannot determine what he has now while he is under treatment for something he might not have. I’m really very upset because of such a confusing situation, not knowing what can I do that is the best for my child.
As far as the hearing is concerned, we did some testing that proved that neurologycally his hearing system is fine. As you probably remember, he had a cold by then, followed by a bronquitis now which I’m sure is affecting him. It was extremely helpful what all of you told me. I have to say that still he doesn’t react too much to strong noises, but the whispering technique works now (less when I tried it at first). He clearly reacts to me whispering his name at his back. Anyway, the moment he is out of all these bronquitis and colds we’ll repeat the tests again.
Many thanks for your support always.