Children's Check Up

Just got home from Children's Hospital, and my mind is full of information, thoughts and feelings. After 3 years of not being there, it felt like home going back. The Nephrology Nurse, who sees us before we see Ethan's Nephrologist, was so excited and happy to see Ethan, and how much he has grown since we last saw her. His Nephrologist was very happy that he responded so well to the prednisone and that he was able to get off within 3 months. This is what they had hoped for when they put him on the chemo drug a few years ago. That if he were to relapse again that he would respond better to the prednisone, and now I understand what they meant.

It was hard to hear that we could expect Ethan to have more relapses over the years. He again reminded us that once you have Nephrotic Syndrome you will always have it. Which is not what we were told when Ethan was first diagnosed. He told us of a woman who was diagnosed when she was 2 and then didn't relapse again till she was 24. He did say that as Ethan get's older he "should" relapse less and that he could go years between them. But of course they can't say exactly what will happen, only what they "hope" will happen. Based on Ethan's past relapse history, he did say that he is at a higher risk for relapses. He did go into what they would do and possible treatment options if Ethan once again became steroid dependent.  I don't even want to think about the options and all the side effects and risks.

One thing that would determine treatment options would be the results for the bone density test that Ethan will be receiving on July 3rd. They are very much looking forward to getting the results for his bone density test as they are in the midst of doing case studies on the use of prednisone and bone fractures. As well as the effect prednisone has on developing bones. Today they were particularly interested in knowing what doses he received and for how long he received them before he came to Children's Hospital. It is the every day dosing that apparently causes the most damage. Which is why they quickly drop him to every other day as soon as they can. I have realized that every doctor treats Nephrotic Syndrome differently and I pray that the dosages and treatment given in Ethan's younger years haven't caused any irreparable damage.