DAY 14 – A Monday Purge

We had our healthy, sweet, vibrant boy back for about two weeks. It’s been almost a year since we’ve seen that boy. In March of this year, we increased his methotrexate dose to hopefully help with some pain and stiffness he was having. Since then, he has been plagued by extreme fatigue and lack of appetite. Every day was a battle to get him to eat and he barely wanted to do anything except lay on the couch and watch his iPad. At the beginning of last month we decided enough was enough and we lowered his dose back down. That’s when it happened. For two weeks after lowering it, our boy had an insatiable appetite and resounding energy. He wasn’t in pain and he wasn’t having any joint swelling or stiffness. We were lulled into a false sense of security. I knew something was wrong on Halloween night. He had been looking forward to trick-or-treating for months, but after only ten houses, he asked to go home. I tried to ignore it. I tried to explain away the red flag that was waving boldly in front of my face; but, it’s been two weeks now and his complaints have only increased. It’s heartbreaking. I either have a boy who’s too tired to eat or play, or I have a boy who’s in pain and has trouble walking! How can those be my only two options?? This is the most maddening situation I’ve ever experienced. I don’t know what to do! I feel like I am just constantly evaluating him for anything that might be wrong instead of enjoying the precious moments I have with him in the present. Ugh. I give up.


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