Weaning Schedule

Ethan had a checkup today at the pediatrician's office. She was very happy that he is now negative and responding to the steroids. Looking at him she said you can see that he is not sleeping well, he now has dark dark under eye circles. Which is very typically of those that are on steroids, looking at him, is hard to do sometimes because the steroids change his looks and personality. But anyway, back to the visit... His blood pressure is good and his chest and ear infection are clearing with the help of antibiotics so that is good too. We will see her again at the end of next week unless there are any issues. If he gets a fever, he needs to be seen right away, feeling stressed as he just is getting over something and now Jeff said he isn't feeling well.  I was waiting all day for the Nephrologist to call me back from Children's, finally happened while I was driving. Thank goodness I have Bluetooth!

Since Ethan hasn't had a relapse in years they are going to try and see if he will respond to a quick wean. I told them that he hasn't responded well in the past to quick wean's, not that I want him to be on it any longer than he has to. But if we go too quick, he relapses either as we wean or just after he comes off and we have to start all over again. So they want us to try dropping him from 60mg every day to 40mg every other day for two weeks. Then we can try dropping him 10mg every two weeks, they hope to have him off in 3 months, which I am very nervous about. I think it's too quick, but we will just have to wait and see how his body does. The frustrating part of Nephrotic Syndrome is that there is no surefire way of weaning so that he won't relapse. It really is a guessing game and they have told us that, they have to keep changing and trying different ways and hope that one works. Ethan was very happy that he could go down to 40mg every other day, hopefully his body will be able to handle this dose and he can get some much needed sleep!!!