Yesterday was a day from HELL. My son had an appointment with an orthopedic surgeon at the children's hospital in the morning and a GI appointment at the same hospital in the afternoon. Even though we had a scheduled appointment with ortho we had to wait for 3 HOURS to get seen! :voodoo: We were then told that the good news is that it is not avascular necrosis which is what they were looking for given his prednisone use. Bad news was they still don't know why he can't walk. They then told us to keep doing physio and sent us on our way. :voodoo:
At this point in the day there was no point in going home and then returning for the GI appointment so we killed some time in the hospital. FUN. Got to the GI appointment 1 hour early as I figured that we might as well wait there on the off chance they could see us sooner. Of course they couldn't see us sooner (not surprised at that) and in fact they were running 1.5 hours late!!! :voodoo: Finally see GI and she is totally perplexed as to what is going on with my son. His labs are good. The MRI doesn't show anything alarming but he still feels like crap, hasn't been able to make it through a full day of school since January. So we got the talk preparing us for the real possibility that azathioprine isn't working and preparing us for the next step, either methotrexate or Remicade in conjunction with azathioprine. I was surprised to hear that they only recommend Remicade be used at the same time as azathioprine. I know it is probably a bit irrational, I understand why they are recommending the two drugs be used in combination, but I was completely thrown by this suggestion. Nothing like the possibility of a fatal cancer to make a mother PANIC.
In the end we have decided to give the azathioprine some more time to work. I want to give it a month but our GI doesn't want to wait that long... We are adding Pentasa to our list of meds in the hopes that it might help along with all the others and apparently there is some evidence that it can help with the leg issue. When I asked how it could possibly help with the leg issue I was told they don't really know why it works but sometimes it does!?!?!?! :voodoo: :voodoo: :voodoo: Anyhow, I have no problem adding Pentasa on the off chance that it might change things for the better. I am really hoping that the azathioprine works and works SOON.
Sorry for the rambling and poorly worded post. My brain is shot!
At this point in the day there was no point in going home and then returning for the GI appointment so we killed some time in the hospital. FUN. Got to the GI appointment 1 hour early as I figured that we might as well wait there on the off chance they could see us sooner. Of course they couldn't see us sooner (not surprised at that) and in fact they were running 1.5 hours late!!! :voodoo: Finally see GI and she is totally perplexed as to what is going on with my son. His labs are good. The MRI doesn't show anything alarming but he still feels like crap, hasn't been able to make it through a full day of school since January. So we got the talk preparing us for the real possibility that azathioprine isn't working and preparing us for the next step, either methotrexate or Remicade in conjunction with azathioprine. I was surprised to hear that they only recommend Remicade be used at the same time as azathioprine. I know it is probably a bit irrational, I understand why they are recommending the two drugs be used in combination, but I was completely thrown by this suggestion. Nothing like the possibility of a fatal cancer to make a mother PANIC.
In the end we have decided to give the azathioprine some more time to work. I want to give it a month but our GI doesn't want to wait that long... We are adding Pentasa to our list of meds in the hopes that it might help along with all the others and apparently there is some evidence that it can help with the leg issue. When I asked how it could possibly help with the leg issue I was told they don't really know why it works but sometimes it does!?!?!?! :voodoo: :voodoo: :voodoo: Anyhow, I have no problem adding Pentasa on the off chance that it might change things for the better. I am really hoping that the azathioprine works and works SOON.
Sorry for the rambling and poorly worded post. My brain is shot!
) to not have a clear explanation of what is wrong. :voodoo:
