I just realized it has been over a month since my last update, I have had lot's to say but have had a hard time finding the right words. I will start with the basic update on how he is doing physically. We are happy that Ethan responded to the prednsione, he was negative within 2 weeks of starting it. The every day dose is very hard on him and 2 weeks seems like forever when you are going through it.
We then moved to 40mg every other day for 2 weeks and then we are to reduce his dose by 10mg every 2 weeks after that. The whole process takes 12 weeks, so we have about 6 weeks left to go in this round. We are continuing on his 1200mg a day limit of Sodium as it makes him feel better and we have found if we do cheat, his protein will go up. He has caught a cold twice in the last 6 weeks and that only made his protein go up to a trace, so thankful that it didn't go up any higher.
For the most part Ethan is doing well, he amazes me at how he pushes through the School day even when he doesn't feel great. The side effects of the prednisone get less each time we reduce his dose, but that doesn't mean they go away. In fact every time we reduce his dose, his body takes almost a week to adjust to the lower dose. His body aches and he gets very tired, usually but not always that translates into sleeping somewhat better and a decrease in appetite.
Prednisone causes a lot of mood and personality changes as well, and over the years Ethan has experienced anxiety, depression and insomnia. At times it has been very hard to watch prednisone mask Ethan's true personality. It was such a joy to see him come alive for those 3.5 years he was off. Everyone tells me how great Ethan looks and from the outside he does. Although he does not like the round moon face and red complexion that the prednisone gives him. For the first time in his life he asked to get retakes for his School photos. I am thankful that so far the kids at School have not made fun of him for the changes that happen to him.
The emotional side effects of prednisone are some of the hardest and most painful for me to deal with. Seeing my happy go lucky son who loves to do sports and be active, change into a depressed, anxious, insomniac is very hard. Ethan keeps how he is feeling emotionally to himself and it is very hard to get him to talk about his feelings. I though he was doing fairly well this time and was thinking we were going to avoid the typical meltdowns that happen when he has just had enough. Well last night is when it finally happened. An hour after Ethan went to bed, I heard him crying and when I went in to see what was wrong. He said he was feeling very sad, he didn't know why he was sad and that he had been feeling that way for a few days already. I told him it was probably because of the prednisone and that it should get better in a few days as his body adjust to the lower dose. We just reduced him to 20mg on Monday. Most of the time the sad feelings comes and goes and is not a constant, so I am thankful for that. So I prayed for him, dried his tears and my own and he went to sleep half an hour later. He is very tired this morning, but still wanted to go to School. Prayer requests would be for Ethan to continue to stay healthy and protein free and as well as for his emotional health. I struggle with depression so I know how hard it is to feel "happy" when everything in you just can't do it. Thank you for your prayers, we are so blessed and thankful to have such great love and support as we journey through this with Ethan.
