Sunday, August 23, 2009

In the Beginning...

Only five months have passed since Robby was diagnosed with systemic onset JRA, yet sometimes it feels like we've been dealing with this disease for years now. At some point I will have to go back and recap all the events that led us here, but for now I want to focus on where we are today.

When he was diagnosed in March, Robby didn't seem to have any joint specific symptoms outside of having general aches when the fever and rash were active along with some stiffness in his hips at these times. We started treatment with Naproxen (4.2 ml twice a day). In June Dr. H mentioned concern with his knees being "puffy" but it's been hard to tell if this was due to arthritis involvement or just "baby chub." We finally decided to do an ultrasound on both knees which took place on August 10th.

All of the technicians, doctors, and nurses I've worked with at Nationwide Children's Hospital have been a wonderful godsend and this ultrasound technician was no exception. Robby cried upon entering the room--I suspect he thought he was there for labs--but some reassurance, a chance to check out the u/s wand, and a Blue's Clues video soon set him at ease. I wish I could say the same about myself. Even with my lack of education in this area, I could tell from the u/s pictures on the screen there were sizable pockets of fluid on both knees. The arthritis was active in both joints. I had no idea what it would mean for us in terms of treatment, but I knew this was not a positive direction.

Dr. H. called at 9:30 p.m. the next night to confirm what I suspected--both knees were actively involved and we needed to step up treatment. I was offered a choice between a combination of prednisone and weekly methotrexate injections or daily injections of kineret. I was devastated at the idea of having to give such a young child these powerful medications. I asked her for some time to think it over and promised to call the office the next day. I spent the rest of the evening pouring over whatever information I could find online about side effects, success rates, and patient testimonies. I was really fearful of the methotrexate and prednisone side effects, so I called the next day and asked that Robby be started on kineret.

On August 14th we set off for a week's vacation in Nags Head, NC. It was so nice to get away even though I spent more time that week than I care to admit to worrying about starting the injections when we returned home. There were a couple of evenings throughout the week when Robby would feel warm and I would find his temperature was around 100. A dose of Tylenol seemed to take care of things and overall he seemed to be in good spirits. He really enjoyed the sand and the ocean and it was nice to see him playing so much and having a good time. We started the trip home on Friday August 21st which marked the beginning of the decline Robby is currently in.

We broke the car ride up over two days for both trips to try to minimize the amount of continuous sitting in the car seat. Just before stopping for the evening Friday night, Robby was very whiny in the car seat with a lot of squirming and complaining that his "butt hurt" (meaning his hips). He seemed to perk up a bit in the hotel room and enjoyed sitting on the big beds and watching television. Throughout the night though I woke up to him whimpering or crying. A couple of times he actually woke up crying for me and I had to pat him and sit with him to get him back to sleep. I wasn't sure if he was in pain or if it was just a matter of sleeping in a strange place. The next morning he seemed to be okay except for being very clingy and some whining.

During the second day's car ride, he became uncomfortable much more quickly. We made some extra stops to let him out of the car seat and I noticed he was reluctant to walk much at all and wanted carried most of the time. By the time we made it home, he was noticeably limping and seemed very uncomfortable/moody and clingy. He did not want to walk much at all and his knees were looking larger and felt warm to the touch. I decided to try the heating pad and it seemed to calm him and provide some relief. During the night I heard more whimpering and crying from him even though he was sleeping in his own familiar bed. I was beginning to believe he was experiencing enough pain during the night that it was disturbing his sleep.

This morning when he woke up I got him out of bed and had him stand up on the floor. He took about two wobbly steps and burst into tears with his arms up for me to carry him. This went on for the first couple of hours of the day and he remained somewhat reluctant to walk unless he was really distracted with playing. We went through a similar cycle after his nap and again in the evening. He finally asked for the heating pad which really surprised me. Perhaps it does help relieve the worst of the pain? At bedtime he tried to lay down in his usual position on his stomach with his head to the side and each time he did he would cry and pick it back up telling me his head hurt. I took his temperature and it was 101 so I gave him some Tylenol and had him try laying on his back. That seemed more comfortable and he was able to fall asleep.

I am at a loss at this point. He seems to be declining rapidly with more and more pain as each day passes. To add to my worry--I received a call on Friday from the pharmacy company advising they need prior authorization for the kineret. They sent forms to Dr. H's office. I have no idea what this means. She warned me that the insurance company might not want to cover the kineret because it wasn't FDA approved for children yet and he hadn't failed at least one second line therapy (like mtx). I have to call the office tomorrow morning to talk over options as I'm not comfortable letting him go on like this while they sort out the red tape. He needs some relief as quickly as possible. I can't stand seeing him in pain like this and it scares me when I let myself wonder how much of this damage might be permanent.

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