We completed Parker’s second round of remicade last Friday and met with is doctor. She confirmed our fears…Parker’s arthritis has progressed, resulting in his joints turning on his left foot. The doctor has given us a script for foot orthotics. Her comment was that he is trying to walk on “bones”. His foot is all swollen and rolling inward. His toes are beginning to shift to the left. Both sets of ankles swell constantly and we got confirmation that Parker has arthritis in every joint in his body. He complains constantly about his feet, ankles, knees, lower back, neck, shoulders, wrists, and fingers. And he gets stabbing pains in his ribs. The doctor is most concerned about the intensity of his pain, even more than his visible swelling. She was also concerned about his inability to sleep well, due to the pain. So, he is now taking morphine prior to bed. It’s been hard putting him on such a strong medication, but it’s been even more difficult dealing with the judgment and comments of others when you tell them that your child is on morphine…”what, he’s just a child”, “are you sure you are doing the right thing?”, “maybe you should get another doctor”, “do you know that’s a narcotic?”, “that stuff is addictive, why would you put him on that?”….seriously, do people really think that we “want” to put him on this?
Parker is incredibly strong and sometimes he will play or work through his pain. But the nights are the hardest. He wakes in pain or he cannot fall asleep because of his pain. People that make these comments do not realize what they are saying and we know this. They are probably well intended. This was one of the hardest decisions we have made thus far. But Parker is sleeping now through the night and he looks more rested. That can only be a good thing. Sleep brings healing…And he desperately needs healing…he has been in pain since October 2008 and he is only eleven!
We know that it is shocking the amount of medications that Parker has to take, but Parker is not alone in this journey. Children with JA are often on medications and many are on multiple medications because there is not enough research on this illness that affects 300,000 children. And there are multiple forms of juvenile arthritis; so it is quite complex.
I wish that I could share that things are better; that treatment has worked, but it hasn’t yet. Partly because the doctor feels that it took too long to start treatment, but she was very reassuring and that she will help him. We are really hoping that the remicade infusions will be the answer for Parker. His rheumatologist wanted to bring him in sooner for his next infusion, but the insurance company is dictating treatment and timelines. So we go back on Mar. 4th. However, he might have to go in two weeks for a solumedrol infusion to hold him over.
In the meantime, we have an appointment this week with a dermatologist because he is having weird skin issues. There is a dark spot on his arm that the nurse and doctor commented on as looking like a skin condition that happens with diabetes. Good news, yesterday they confirmed that his glucose level looks ok…no diabetes. He also has small bumps on his elbows and his elbows get red. The bumps go from red to white and sometimes back to red. When I asked if it was psoriasis, they said no and they were not sure what it was. Hopefully Friday we will get some answers from the dermatologist.
Parker had one important question for the doctor: “Can I slide on my skate board?” (This is coming from my very hopeful child who is in his wheelchair more than not at this time.) She told him no. He totally shut down…I knew he was trying to hold back tears. She tried to encourage him and explained why and that he needs to give the meds time to work and that he could easily get hurt right now. She said that she is working hard to make him better so that he could go back to skateboarding. She even tried to relate to him and pointed out that she was wearing his favorite color purple. She rubbed his shoulder and looked at me with empathetic eyes and hugged me as she tried to encourage us both that it would get better.
They asked how Parker was doing at school. He has now missed 55 days of school. I shared that I was very proud of him because, for the second time, he made all A’s and B’s. I also admitted that keeping up with all this medical stuff, helping him make up homework, and working full time is really getting quite difficult. The school has been wonderful and he has a 504 plan, but she said it was time to ask for an IEP (individualized education plan) so that we could get homebound services for the days he couldn’t go to school. Long story short, in our county homebound instruction is only done over the phone and he would not be allowed to continue taking advanced classes. They also said that they would not dually enroll him. So in other words, he would have to stop going to school and be in homebound, on the phone…how is this in his best educational interest? How will this “help” me and my husband? Remember, we both work full time. Where is the “individualized” in the IEP? What about the social aspect of being with his friends and his community. I do want Parker to have quality of life, even if it is “sometimes”. This is incredibly frustrating. But at this moment, we are picking our battles. We are likely going to stay with a 504 plan and continue to make up homework and hope, hope, hope that the remicade treatments start working after the next infusion.
For those of you who made it through reading all this, I do want to end on a happy note. Parker has a new friend that he met in the infusion room during our last visit. Many of the kids are younger and the vast majority are female. But Parker was able to spend time playing a video game with is buddy Mark who is the same age as him. It was great for the boys to connect and know that they are not alone in this journey and it made our trip to the infusion room a bit better. His little sister, Charlotte, also has JA; and she did a dance for us. We also got to see Dakota…we will soon be taking her on in a wheelchair race (LOL). Thanks to all our JA family…we couldn’t endure this without you!
