Sick, sick, sick.
Back to the GI dr. Josh went yesterday. He had his last Remicade infusion on July 21st and it's done NOTHING to help... he's still in so much pain, running fevers, having nausea and making frequent trips to the bathroom.
They first started him on Remicade last Summer when he was admitted in the hospital. It worked amazingly well and fast! After the first few treatments, they quickly lost their effectiveness though.
The dr. wanted to add on 6-MP w/ the Remicade, but with all the aweful articles about lymphoma's that have popped up with children on that mix of drugs, I was unwilling to let him add it in. I hate all the drugs quite frankly. I feel so much guilt letting him take them.
Anywho, so the dr. decided to take him off the Remicade since it's clearly not working. He left it in my hands on what to do next.... All the options suck. But with him being SO sick for so long, I felt I had no other choice, but to go along with his suggestion. So they are putting him on Prednisone (steroid) and a low dose of Methotrexate.
I hate Prednisone. The side affects are horrible... they make his face get so round and puffy (the notorious "moon face"), plus his mood changes so much. He becomes so nasty and irritable, which if you know Josh, is COMPLETELY out of character for him. It's frustrating to see him go through that. It also takes them a long time to ween him off of it, which makes all these side affects just drag on and on..... But, it works.. *sigh*
He started his first dose last night. My heart hurts. He's suppose to start the Methotrexate on Friday. I read on the packaging that it can cause hair loss. ....seriously?
I wanted to avoid these toxic medications and try enteral nutrition or other dietary changes first, but I just felt like it was in his best interest to get him better fast at this point. With the recent weight loss from being too sick to eat.... I'm just plain scared. I hoping that this will all get him stable... he's been sick for far too long.
ox
