Back on Prednisone

I just spoke to Ethan's Nephrologist, he called me at home! How cool is that? He is such a wonderful kind supportive doctor, who takes the time to tell me what is going on. He explained that once you have Nephrotic Syndrome, you will always have Nephrotic Syndrome. It can lie dormant for years even a dozen or so before rearing it's ugly head again. So he told me straight out this is something he will always struggle with. Which to be honest is new information to us, we were always told by our Abbotsford doctors that he would eventually "outgrow"this disease. That they more time that went by without a relapse the better. But that doesn't appear to be true anymore.

So on that note, he said Ethan is experiencing what they call a relapse and he said we have reached the point where he HAS to start back on prednisone. If we don't start him on prednisone to stop the protein in his urine, he will get very sick and for sure end up in the hospital. He is trying to avoid a hospital stay if we can. So Ethan will start taking 12 tablets of prednisone a day until he has been negative for protein for 3 days. At that point I am to call him back and discuss his dosage from there.

Ethan is devastated to find out that he has to go back on prednisone, he is not normally a hugger, but he let me hold him as he cried. Don't tell him I said he cried either, boys don't like that sort of thing to get out :). Prednisone has often been called a miracle drug by the medical community because it treats a variety of conditions and it is a cheap drug. But to anyone who has ever been on it or watched someone they love be on it. It is a drug from HELL!!!! I hate prednisone, and yet it has saved my son's life. The side effects are what scare us the most, Ethan knows how horrible it makes him feel and I know he does not want to go back on it. He will experience severe insomnia, mood swings, personality changes, inrceased hunger, weight gain, body changes,stomach pains, slowed growth, and suppressed immune system to name a few!

I think of how we barely made it thru those 7 years, I am so afraid at the moment. Once you have been through Hell, that's how it felt, you never want to go back. So tonight, I don't feel strong, I feel sad and scared, I can't bear to watch my son suffer, oh how I wish I could take this from him. But I know I don't have a choice, this is what we have been given, so I will trust in God that he knows better than we do, even when I don't understand. Please pray for Ethan, he is not handling this news well, pray that the side effects will not be too hard on him and us. That his body will respond to the prednisone fast so we can start to reduce his dosage.  I will update as the days progress, and thank you for your prayers, I can't begin to express how much we have felt and needed them. Laura, Jeff, Adam & Ethan