Yesterday we took Kaden to see his neurologist. This was our first appointment with his new neurologist, Dr. Joseph. Kaden has seen her once before as she is the movement disorder specialist at Children’s. We really liked her the one time we got to meet with her and today confirmed that feeling.
At this point we see the neurologist about once a year. Each time we go to the appointment we always see the physicians assistant first. Luckily Kaden’s previous neurologist had the same PA as his current neurologist. Her name is Erika and Kaden seems to like her. Of course, he has a way of charming all the medical staff he sees. We gave the PA an update on how things have been going and then she checked him out. She was very excited at how he looked and the progress he’s making. Just checking his tension in his legs and hearing him talk more really wowed her.
Dr. Joseph came in and Kaden seemed to really like her as well. She was much better than his previous neurologist at explaining the options and limits of his baclofen pump and what we should be looking for as we progress with his treatment. Kaden has gotten a bit tighter over the last month or so and this has been frustrating for all of us. After seeing immediate improvement with the baclofen pump, I think we thought it would only get better from that point. The problem is, Kaden also had botox injections a month or so before he got his pump. The injections loosen targeted areas and last about 4 to 6 months, which is where we are now. As the botox wears off the worst of his tight muscles have started to regress and become tighter. This however makes me feel a little better because it means the pump is still working, we just haven’t gotten to the right dosage yet.
The good news is that we can continue to get botox injections in the muscles where the tension has gotten worse. Then, as the baclofen starts to loosen those areas more, we can back off with the injections. The one thing this neurologist is big on is making sure that Kaden is comfortable. Being a movement disorder specialist, I think she better understands his needs and that really has Miki and I encouraged.
An appointment like yesterday is the affirmation we needed to know that we are on the right path with his treatment. Miki and I see Kaden everyday and it’s hard to see the gradual changes in his body. When someone like his PA sees him only once or twice a year they can really see the difference. It’s good to hear others say how well they think he’s doing and it definitely gave us the boost we needed.
So… we press on! We are waiting to hear from his physical medicine doctor about getting a couple of botox injections in the areas he needs them. Hopefully we will get those this month. We also continue to push with the increases in his baclofen and keep working him hard with therapy. The progress is slow, but it’s still progress. Kaden has always worked hard with the challenges he faces and we couldn’t be more proud of him.