I am doing a happy dance today, as we drop Ethan's prednisone once again. This time to 6 pills (30mg) every other day. We started out at 60mg (12 pills) every day for 2 weeks, to 40mg (8 pills) every other day for two weeks, and now to 30 mg. If all goes well, we will continue to reduce his dosage every 2 weeks. They hope to have him off prednisone completely by May. This is one of the fastest weans we have ever done with Ethan. Like I said before, he has not responded well to these fast weans in the past, often ending right back on prednisone as the dose gets lower. But we are praying that this time will be different.
We had a great checkup with our pediatrician last Thursday, she wants to see Ethan every two weeks to make sure his blood pressure and other things are okay. I love how she takes the time to talk to Ethan and ask him how HE is feeling. When he was younger, I was the one who had to tell them how he was feeling. I did my best to understand how he was feeling and explain that to them. But it is totally different going through prednisone yourself, so I am very happy that he can now express how he is feeling. His blood pressure is normal, which is good. Often kids with Nephrotic Syndrome have high blood pressure and have to be on medication for that too. Thankfully Ethan has never had to go down that road, he has been close but thankfully that is one less thing we have had to worry about. He has gained 8 pounds since this whole episode began in January. What he gained in fluid, he lost a few pound when the prednisone started working. But what you lose in excess fluid, you quickly put back on due to the increased hunger that prednisone causes.
Increased hunger is a whole other beast and at times I just have to laugh at Ethan. When a person is on prednisone, particularly higher doses, they are hungry ALL the time, and Ethan literally thinks and dreams about food all day long. When we drive places and he happens to see a restaurant he starts talking about going in to eat there. Most of the food he craves, he cannot have either, due to the high salt content. At times I do go a bit crazy as I feel like my day revolves around food and what he can and can't eat and making sure I have enough healthy options for him. Again, I am thankful that he is older and I can reason with him more.
Prednisone also causes mood swings and personality changes, and when Ethan was younger he was very hard to manage at times. I am so thankful that we were able to have 3.5 years of Ethan being off all his medications. It gave us a chance to get to know our son for the first time since he was a baby without prednisone. I am thankful that so far the mood swings have been better than in the past. He still has his moments and last Sunday was a particularly bad one. Where he would not come out of his room, take his medicine or talk to me for hours!!!! All of which are uncharacteristic of Ethan off prednisone. Seeing him like that last week, made me fear for the teen years. The teen years are hard enough without adding prednisone to the mix.
Ethan is also sleeping better since his pediatrician increased his melatonin, and his stomach pains have been much less since she doubled his dose for that too. So that is how things have been going these past few weeks, we are looking forward to a relaxing Spring Break at home, Jeff has to work so it will be just the boys and I during the day. Thank you for your continued prayers, Ethan says he is very thankful that so many people are praying for him. He and we feel that the reduction in side effects and how well he is responding so far is because of all the prayers. Prayer is an amazing thing, and even though our prayers for complete healing have not yet come. We see the hand of God and his faithfulness to us, even in this. Some days it is harder to see what God is doing and why Ethan must go through this again. When you are going through a valley it is often hard to see your way out, but it is in the mountain tops that you can see all that God has brought you through.
"We get that experience of God when He stretches open His arms on that Cross and cries, 'For you. For all your regrets and for all your impossibles, for all that will never be and for all that once was, for all that you can’t make right and for all that you got wrong, for your Judas failures and your Peter denials and your Lazarus griefs, I offer to take the nails, the sharp edge of everything, and offer you myself because I want you, to take you, you in your wild grief, you in your anger and your disappointment and your wounds and your not-yet-there, you, just as you are, not some improved version of you, but you – I came for you, to hold you, to carry you, to save you.'” - Ann Voskamp
