Let me start by saying I hate, I mean HATE this disease! Trevor has missed a lot of school, these new medications given in February (
sulfasalazine 500 mg 2 x a day and nabumetone 750 mg 2 pills) just don't seem to be working either. Trevor is not like most JA kids, he does not want to tell all his friends he has it or stand out in any way at school. He wants to have regular friends and try to think able JA the least amount possible. He said he feels it every minute of his life he really doesn't want to talk about it too. He wants to try to do regular things to make him forget he has it even if it is just for a minute. I get that but I on the other hand want to know everything. I want to talk to everyone, learn everything I can about it. He doesn't mind that I do but I do want to respect his boundaries. Anyway, It makes it hard. Maybe one day he will be more open about it. It was just a couple months ago that they told him it didn't have it, he's probably still confused. I know I would be if I was 14 years old and dealing with all of this. So we go into Dr. Santiago's office with a positive attitude.....Trevor pretty much hurts on his feet, back, hands, and neck. He doesn't really complain of knee pain anymore. That's a positive right? Wrong! She examined him and wow, he had inflammation everywhere of course where he complains but also his knees and his wrists. She was so discouraged. Another concern was that Trevor about two times a month will get a sore throat and a stuffy nose. His joints hurt really bad (8 or 9 pain level) and he sleeps a lot. I always thought this was his flare. We took him to our pediatrician and he thought allergies but nothing helped. It is weird, he does not have any running nose just inflammation. It usually goes away in 3 or 4 days. This just happened to be a day he had that so she referred him to an ENT. We go on June 2nd. She showed me up his nose how most of his airway is blocked off due to inflammation. We just got rid of the neurologist for his headaches (they have gotten much better so Trevor took himself off that medication!) the neurologist agreed if they ever got bad again that the rheumatologist could just start him again on it.
After the whole misdiagnosed scare, I really took an approach that maybe if I stopped researching Nd talking to other parents and people, this would all go away. It hasn't! One thing I have realized as I've slowly gotten back into the arthritis world is that there is a chance that Trevor will go into medical remission but with his type of arthritis he will have it for the rest of his life. He does not know it yet but I think he is beginning to realize it too. It breaks my heart! But I do hope that he can have at least some pain free days.
He does amaze me though, with all of the days he has missed, he managed to get straight A's this past 9 weeks and may get all A's this final 9 weeks too except in Spanish. He is so good about making his work up and getting with his teachers.
Today is the day his entire class is going to Universal Studios. He obviously can't go because he cannot walk around the park. And, he in no way would get a wheelchair with it being a school trip, so we knew it was not an option for him.
On the positive note...he starts Humira! We just have to wait for the approval. I will give him the injection again just like the Enbrel-yikes! This is only every 2 weeks though. Everyone says it burns so we will see. The doctor, Trevor, and myself all have positive thoughts that this one is going to work!! It has to!
