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.
 

Last Day!!!

Today I gave Ethan his last dose of prednisone, YAHOO!!!! I really can't believe that after 3 months we are finally to this point, and that Ethan's body is still managing the quicker wean without any protein. Typically Ethan would need to stay on the prednisone for at least 6-12 month, if he could get off at all. I remember feeling so frustrated as we would get down to the lower doses only to discover we had to start all over again because of protein. I have no idea how this is going to go, and if he will have another relapse right away or not. I pray that Ethan will not have go back on it again for a long time! He has gone through a lot in these last few months. The side effects have been much better thanks to all of you for praying for him. But he still has not been himself and particularly since he broke his arm a month ago, things have been challenging. We have been going for x rays twice a week for the last month, and we finally received word from the Orthopedic Surgeon that Ethan's bones were finally starting to heal, and most importantly the bone had stopped moving. So the danger of surgery was officially over. He said we could come back in 3 weeks for another x ray, and if everything looked good. He said he would consider taking off Ethan's long cast and giving him a shorter one for the last few weeks. We are waiting to hear from Children's Hospital as well about a bone density appointment. After seeing his pediatrician in town for a check up, she agreed that he needed to get a bone density scan done, as well as conferring with the specialists there. They told us to give Ethan 1000mg of Calcium and Vitamin D a day. We had been doing the Vitamin D for years already but we have now added Calcium. Tuesday we go into see his Nephrologist, and I am very much looking forward to that, it's always good to get their advice and have them take a look at Ethan. But I have appreciated so very much Ethan's Pediatrician here in town, who has taken such great care of Ethan, she takes the time to listen to him, and ask him questions about how he is feeling, eating and the side effects.

The side effects are of course very noticeable the higher the dose he is on. But oddly enough as he weans and particularly in the last 4-6 weeks. I have noticed more moodiness, crying, insomnia in the last while than say 2 months ago. I have read that it is normal to experience this as the body begins to handle hormone production and function apart from the prednisone. Recently he had to miss out on going swimming with his cousins from out of town because of his broken arm. That was a very tough afternoon, watching him cry, wailing at some points and not being able to calm him down. Nothing I said or did helped, and I was all by myself dealing with him too. He has had a few more episodes like that, particularly when he is feeling overwhelmed and stressed. He got behind in his School work and having missing assignments also caused him great stress. If he doesn't get them all handed in by June 6 he can't go to his year end class party. Which is also a swimming party!!! He won't have his cast off for that either, so I am bracing myself for another meltdown. Although my Mom graciously offered to host his friends over to their pool when his cast is off. So I am hoping that will help the missing out on the school party blues! So having said all that, now comes the hard part, waiting and continuing to trust in God. It has been amazing to see so many of Ethan's classmates and teachers, praying and supporting him. God has truly been working in the lives of these young ones, praying that the seeds that have been planted will grown and blossom. I love the photo below, we have been reminded and seen God's faithfulness and care for us. Always it comes right when we need it and right when we think we can't take anymore, and for that I am thankful!