It’s getting old, I have to admit.
My son and I went for another check up with his rhuematolgist yesterday, to see where we were at and to find out whether or not the changes made to his drugs regimen have made a difference in his overall well being. You would think that after dealing with this disease for 10+ years things would get easier, but just when you think you’ve got this arthritis thing figured out, boom, here’s another plot twist you haven’t dealt with before.
At home we haven’t seen a lot of improvement when it comes to him feeling well. Despite the relaxing Christmas break he is still missing a lot of school and he really cant afford that at the moment.
It’s like a complicated puzzle that we are trying to figure out. So many components and so many different ways to approach it, but so far we haven’t solved it yet!
I have to give big credits to our wonderful doc. I know it is her job, but she goes above and beyond to push, puzzle,figure out, pull strings and think outside the box to help us make my guy’s life easier when it comes to getting him well. Today she phoned me at home at about 7.30 pm, just to follow up with something we had discussed yesterday. I so appreciate her.
To summarize: he has a virus plaguing him. The virus makes him feel sick. It is bearable but when he has to take his Methotrexate he gets so sick he can’t function for at least a day (Enbrel goes better, but is also bugging him). For this reason some other drugs where also discontinued. He has had two rounds of heavy antibiotics to try and get rid of the virus, but they were not successful, he still is testing positive for it. Now the doc has decided to discontinue MTX as well, to see if he will feel a bit better or at least does not have to miss that much school. He is referred to a G.I. specialist to try and get to the bottom of his stomach problems.The waiting time is 4-6 months. In the mean time we will try one more round of slightly different antibiotics to hopefully come one step closer to kicking this virus to the curb. In the mean time, this path he has to take is compromising his arthritis treatment. His joints have definitely been worse, but they are not great either at the moment. So….long way from being where we want him to be.
He is getting frustrated and understandably so. He’s 17. He wants to hang out with friends, be normal, not having to feel sick and not always having to take medication. Here is to hoping we can soon turn a corner and things are getting a bit easier for him.
And they girl child you may ask? She is doing wonderful! It’s wonderful to see her doing her thing!