So it has been almost a year since my last blog post and I haven't had much to report until now.... After 14 months of being on this drug MMF Ethan has been enjoying a time of relief from prednisone. He has been enjoying eating things normal kids eat and that includes salty things he normally isn't allowed while he has protein or being on prednisone. He has finally been able to sleep and get into more of a routine in that department which has helped him immensely with functioning well at School. He has been feeling well enough to join the volleyball team and is currently playing club volleyball. He does get more fatigued than other kids due to the drug he is on, but it is much more manageable than we thought. This winter Ethan did get sick quite a lot, and that is also because of the MMF and the strong immune suppression. But during those times of illness Ethan rarely had any protein or if he did it was minimal and went away quickly.
So you can imagine our shock and surprise when Ethan tested himself this morning after seeing a lot of foam in the toilet and discovered that once again he is spilling a lot of protein. I have really relaxed on testing him and so it has probably been a month since I last tested him. So we really have no idea how long this has been going on. Earlier in the week he was complaining of being very tired and I have noticed that in the last few weeks he has been looking very pale and his appetite has decreased even more than usual.
So for now we will have to wait a few more days and then call Children's Hospital to see what they want us to do. It isn't a good thing that he relapses while on this MMF. Ethan is understandably concerned about going back on prednisone. We have so enjoyed these last 14 months of him being off prednisone. The side effects are so harsh and really change Ethan's personality and changes really everything about him. So please join us in praying for Ethan that the protein will go away quickly before any medical intervention is needed.
