Possibilities

Well, we saw the pediatric rheumatologist today and Alex had probably the most thorough assessment done on him that I have ever seen in my whole life. She spent nearly 2 hours with us and explained a lot of things. We still do not have any answers, which is the hard part with this disease- there is not a specific lab test that can just tell you exactly what is causing this. Most of it is treat the symptoms and wait and see. One thing we know is that it will be a long road ahead of us and we need to just be patient and take one day at a time. I think that is the lesson God wants us to get out of this and I am trying really hard to learn it. The one thing that helps incredibly is that Alex has been an absolute rock star during all of this. He has not really complained about any of the appointments and he actually said, "It was really fun going to your doctor's today mom" (we are seeing rheumatologist at Gillette). Ah, to be 6 and unaware....

Onto the visit. She told us that he definitely has arthritis in many of his joints- both knees, both wrists, both ankles, both hips and both shoulders. However, it doesn't seem to affect all of the joints at the same time- it moves around. She gave us a list of possibilities:
1. It could be post strep reactive arthritis which typically goes away after a period (usually less than a year). The problem with this is that because the risk of developing rheumatic heart disease in these kids is significantly higher with any subsequent strep infections, he would have to be on an antibiotic for some time- probably 1 or 2 years. Seems like she was thinking this was the most likely option based on his symptoms.
2. It could be rheumatic fever which is also due to strep (if he had it for a little bit before he was treated). This type of arhtritis also goes away in a relatively short time period but can cause rheumatic heart disease. Because this is a possibility, we now need to bring him to a cardiologist ASAP to have an echocardiogram done of his heart. If the lab test that shows long term (like a month or so) strep infection comes back high, she will diagnose it as this and he will have to be on antibiotics for 10-15 years and follow up with a cardiologist regularly.
3. It could also be a type of serum sickness caused from his antibiotics he was on from his strep. Problem with this is there is absolutely no way to be sure this is what caused it.
4. It could be Juvenile Rheumatoid Arthritis, although she said she didn't think so, but she wouldn't probably diagnose this until he had his arthritis for like 6 months to a year. So, he'd still be put on an antibiotic long term anyways.
5. It could be a funky viral infection, like parvovirus. This type of arthritis can go away in as short as 2 weeks but can last up to a year. He has been tested for this so if this were to come back extremely high and the strep tests extremely low, she would go with this diagnosis. She would still probably recommend the antibiotic treatment just in case though for a little while.

On a good note, his ANA was negative, which is great news, relatively speaking. It means he doesn't have anything "really bad", like lupus for example. Also, he is moving around and even rode his bike for about 10 minutes tonight. The medication seems to be helping his pain and he is a little back to his goofy self. He drew cat whiskers on himself for his appointment today- in permanent marker- it was a good look!

We are so thankful for all of the support we have received already! I am trying to think positive and keep optimistic. I know that there are far worse things in this world and we will get through this. We have tried not to scare Alex too much by talking about it or crying in front of him, but he's a smart kid and I think he's trying to help us by not complaining- which breaks my heart even more. Not a day has gone by that I haven't thought to myself, God, I am so lucky to have healthy kids. And even now when I think it's really unfair and I get really angry about it, I have to stop and think that there must be a reason for this and we are going to learn something important during this journey- I'm sure of it. I will learn more compassion for the parents of the children I take care of and I will learn an even deeper appreciation for the health of all the people in our lives, especially our children. Thank you to everyone for the prayers and the happy thoughts. Alex loves to get mail, so if anybody wants to send any cards, I know he would appreciate it. No sappy sad cards though, just funny ones please :) The sympathy is lost on him at this point as he thinks so far this is all "really cool" (after the pain has subsided that is!).