This morning Ethan and I headed into Children's Hospital for a checkup. It has been two months since he has stopped prednisone and started this new drug. I have to say that Ethan is managing far better than I ever thought he would. They prepare you for the worst and tell you to hope for the best. So it was great to hear from his Nephrologist today that they are SO pleased with how well he is doing on the MMF. In the two months since he has been off prednisone he has grown 2 and a half cm. Which is fantastic, he has a whole year of growing to catch up on. His blood pressure was a little lower than normal this visit, and when I told them that Ethan almost fainted after being in the hot tub while we were in Maui over spring break. They said it was likely due to his blood pressure being too low and being in the hot tub too long. We had a fantastic time over spring break enjoying the sun and being with my family in Maui. We soon found out that the MMF causes sun sensitivity, so Ethan was a bit disappointed that he couldn't be out in the sun like he usually can. Even with a high SPF, he still managed to burn, but he came home with some color which is what he desperately wanted. His Nephrologist said that being in the Sun is really good for his bones, and he was happy that we had a chance to get away.
Ethan is still dealing with a lot of bone and joint pain and his Neph hopes that as time goes on and he remains off prednisone that it will improve. So for now the plan is keep him on the MMF for the next year and then they will talk to us about weaning him. The hope is that the MMF gives his body a good rest from the steroids and that maybe he will get another few years off of everything. But he did say that Ethan could still relapse even while on the MMF and if he gets protein he will have to go back on prednisone. He has been sick once so far while on the MMF and they were pleased that he didn't get a fever or have any protein. Hoping and praying that continues. It has been an absolute joy seeing Ethan's true personality coming back, his smiles and sense of humour. I have really missed my son. Although he is very tired still, he is slowly finding the energy to return to sports and is enjoying playing badminton and club volleyball. Thank you all for your continued prayers, we appreciate it so much.
Tuesday, April 8, 2014
Thursday, February 6, 2014
Update
I am super excited that Ethan had a great doctor's appointment this afternoon. His blood pressure and all his blood levels are in the NORMAL range!!! Which is amazing because the new medication can cause high blood pressure. He will have to get his blood pressure checked once a month. As well, his blood tests are all normal which is also amazing considering how the medication suppresses the immune system. His doctor advised that if he gets sick we will have to get his levels checked again to make sure they don't drop too much. But for now, we are celebrating that he is doing fairly well on this new medication. He continues to be tired and his appetite has decreased but his weight went up from last month, so maybe he is eating more than I think!
Tomorrow is also a big day for Ethan as he takes his last dose of prednisone. So far he has been negative for protein and has passed the point of where he has been relapsing. So we know that this new medication is working. We are hoping and praying that Ethan will finally be able to get off prednisone and hopefully be relapse free for awhile! I will keep you posted as to how it goes, but thank you again for your continued prayers. We really appreciate them, and I truly believe that God is using those prayers in helping Ethan. From reading other patient's stories, we know it could be so much worse. So thank you so much for your love and prayers!
Tomorrow is also a big day for Ethan as he takes his last dose of prednisone. So far he has been negative for protein and has passed the point of where he has been relapsing. So we know that this new medication is working. We are hoping and praying that Ethan will finally be able to get off prednisone and hopefully be relapse free for awhile! I will keep you posted as to how it goes, but thank you again for your continued prayers. We really appreciate them, and I truly believe that God is using those prayers in helping Ethan. From reading other patient's stories, we know it could be so much worse. So thank you so much for your love and prayers!
Thursday, January 23, 2014
Update
Ethan did come down with his first cold while on the MMF and Prednisone last week. I was super nervous about this, as I had no idea what to expect. So in a way, I am glad to have it over with and it gives us more of an idea of what to expect. He did get the cold more severley than his brother and it also took him longer to recover. But other than that, we are so thankful that the cold did not trigger any protein and he did not have a fever or any other complications. One less thing to worry about!
Tomorrow is also a big day for Ethan as he will reduce his prednisone to 1pill (5mg) every other day for the next two weeks. Then if all goes well at the end of those two weeks he will officially be finished with Prednisone. BUT, this is the dose that Ethan has been relapsing at for the last few months. So I have no idea what to expect. Children's did warn us that he might still relapse 1-2 times even with the MMF. Anymore than that, and they would look at switching drugs for him. So please pray for Ethan, that he would be able to handle the full dose of the MMF without any significant side effects. As well as we desperately want him off Prednisone, so please pray that he will be able to get off this time. Thank you so much, Laura, Jeff, Adam & Ethan
Tuesday, January 7, 2014
Children's Visit
Today was a big day for us as we headed into B.C. Children's Hospital to discuss with Ethan's Nephrologist putting him on another drug. I am so glad that Jeff was able to be with us, having another pair of ears to listen as well as to ask questions. So the big news is that after a lot of discussion, his Nephrologist decided to put Ethan on a drug called Mycophenolate Mofetil or MMF for short. It is a drug that they use in organ transplant recipients to prevent the rejection of donated organs. But they also use it to treat a variety of autoimmune diseases including, Nephrotic Syndrome. As it impairs the function of immune system cells that become overactive in autoimmune diseases.
From what I understand MMF is not a chemotherapy drug like the one he took 4 years ago. But it does and will suppress his immune system, even more than the prednisone does. Making him more prone to getting viruses and infections. It will also lower his blood cell counts so he will have to have blood tests to check that his levels don't get too low.
Ethan's Nephrologist assures us that this drug is well tolerated among children at their clinics. But I have to admit the long list of side effects is rather scary to read. They said the most common side effect is diarrhea and stomach upset. If that happens and becomes too bothersome, then we might have to change drugs. I did tell them that Ethan already suffers with a lot of stomach pain because of the prednisone and that he is taking medicine for it, which has been helping. He did say that once Ethan gets off prednisone, he wants him to stop the medication to help his stomach as it won't do anything to help with the stomach pain caused by the MMF. Unfortunately, there is nothing they can give him to help with that... other than stopping the drug.
The long term side effect that concerns me the most is that taking this drug increases Ethan's risk for getting certain types of cancers down the road. The down side of MMF is that Ethan will have to take it for at least a year and possibly even two. It was also disappointing to hear that Ethan may still relapse while taking the MMF. Which means that he would have to continue taking prednisone as well as the MMF. We were really hoping that he wouldn't have to go on anymore prednsione, that starting this new drug would help him to never have another relapse again. To be our miracle... But that doesn't seem to be the case, as his Doctor reminded us once again that there is no cure.
As we once again step out into the great unknown, I would ask for your prayers. Pray for Ethan that the side effects will not be too hard to manage. Pray that this new drug works, and that he will be able to be fully weaned off the prednisone with NO more relapses. Pray for good health for all of us so that we don't bring home any germs that would complicate Ethan's life anymore. Pray that we would continue to find our strength in Jesus and that this next step of the journey will bring us closer to him and to each other. Without a doubt, we know that God has never once left us on our own and we will trust in him to get us through this next year. I will update you as I can to let you know how he is handling this new drug, Thank you for praying, lot's of Love, Laura, Jeff, Adam & Ethan
From what I understand MMF is not a chemotherapy drug like the one he took 4 years ago. But it does and will suppress his immune system, even more than the prednisone does. Making him more prone to getting viruses and infections. It will also lower his blood cell counts so he will have to have blood tests to check that his levels don't get too low.
Ethan's Nephrologist assures us that this drug is well tolerated among children at their clinics. But I have to admit the long list of side effects is rather scary to read. They said the most common side effect is diarrhea and stomach upset. If that happens and becomes too bothersome, then we might have to change drugs. I did tell them that Ethan already suffers with a lot of stomach pain because of the prednisone and that he is taking medicine for it, which has been helping. He did say that once Ethan gets off prednisone, he wants him to stop the medication to help his stomach as it won't do anything to help with the stomach pain caused by the MMF. Unfortunately, there is nothing they can give him to help with that... other than stopping the drug.
The long term side effect that concerns me the most is that taking this drug increases Ethan's risk for getting certain types of cancers down the road. The down side of MMF is that Ethan will have to take it for at least a year and possibly even two. It was also disappointing to hear that Ethan may still relapse while taking the MMF. Which means that he would have to continue taking prednisone as well as the MMF. We were really hoping that he wouldn't have to go on anymore prednsione, that starting this new drug would help him to never have another relapse again. To be our miracle... But that doesn't seem to be the case, as his Doctor reminded us once again that there is no cure.
As we once again step out into the great unknown, I would ask for your prayers. Pray for Ethan that the side effects will not be too hard to manage. Pray that this new drug works, and that he will be able to be fully weaned off the prednisone with NO more relapses. Pray for good health for all of us so that we don't bring home any germs that would complicate Ethan's life anymore. Pray that we would continue to find our strength in Jesus and that this next step of the journey will bring us closer to him and to each other. Without a doubt, we know that God has never once left us on our own and we will trust in him to get us through this next year. I will update you as I can to let you know how he is handling this new drug, Thank you for praying, lot's of Love, Laura, Jeff, Adam & Ethan
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