Marty has been feeling nauseous for two days. I thought it was a side effect from his methotrexate, which is a chemotherapy drug, but today Bella told me she has been a little nauseous. I’m glad we go to the rheumatologist tomorrow, not just because of the nausea.
I have a huge list of questions for the rheumatologist. I have known for a couple years that Marty can’t have “live” vaccines, but now other JA parents have told me that he shouldn’t be around anyone else that has had a live vaccine recently. His weakened immune system might not be able to fight off any virus that makes its way to him. Well, Bella is due for her chicken pox vaccine, which is live. In Texas, kids can’t start 7th grade without it. I have to get a letter every year explaining why Marty hasn’t had his, and now I may have to do the same with Bella.
Marty isn’t growing. Apparently this happens with JA kids, but it still concerns me. He is the smallest kid in his grade out of some 250-300 kids. He is a year and a half older than Bella and she is several inches taller. He is also anemic. He takes folic acid, but his iron levels were low enough that Dr F thinks that is making his fatigue worse. JA causes fatigue by itself, but if you add anemia on top of that it can become overwhelming.
He is also developing a sensitivity to sunlight. It is almost to the point that he can’t go outside during the day without sunglasses. This morning he had his eyes closed in the car and the sun was still hurting his eyes.
My biggest question is about changing his medicine. There are two new medicines approved to treat systemic JA, and they are both given by IV infusion. The thought of doing an infusion once every 2-4 weeks instead of a painful injection every day is almost too good to be true. I’m afraid to get my hopes up that we could cut that 30-45 minute daily headache out of our lives. That’s how long it takes to get his leg and his mind ready to endure the painful, burning Kineret injection.
Lots of questions for the rheumatologist tomorrow. I hope I can get some good answers.