Since our Riley visit John has overall done exceptionally well. We had that one ... let's call it an episode ... at the end of February that landed him in the hospital for a day, but other than that he's been good! His physical therapist said numerous times he is well beyond the average skill/mobility level for a child his age, and she even said he's doing so well that she feels he does not need the therapy at this point! Of course, we are to call her if we have any questions or concerns or if he seems to be stiffening up or backsliding in anything ... but as of right now, we are therapy free! Yay!
Today, John had check-ups with his ophthalmologist (let's call it Ophth for short) and his rheumatologist (let's call it Rheum for short). The Ophth was amazed at how cooperative John was with the tests -- even putting his chin on that little plastic rest and his forehead up against the bar so she could look at the back of his eyes! He does such a fabulous job with that one. I am so proud of him! The Ophth was also amazed that he knew all of his letters and their sounds. Way to go, Mister Smarty Pants! :) She said his vision is far better than what a child of his age should have (we'll thank Daddy for that trait), and the issue with the nerve above his eye has completely resolved itself! They have no idea how or why, but it did! That means **drum roll, please** no surgery!!!! Woohoo!!! What a relief!!!
The Rheum was also very pleased with what she saw today. The warm weather seems to be helping John tremendously. She wants us to take him off his meloxicam (the anti-inflammatory), keep him on the daily regimen of tylenol 3x's/day, and keep a VERY close eye on him to see how he does. We're hoping that his mood swings will subside without the heavier medicine, and maybe just maybe he'll be alright knee-pain-wise without it! She said that it could be one of two things: 1- He does have a very very odd form of JRA that comes and goes and worsens with the cold weather and season changes. Very possible and would totally make sense for him. OR 2 - Sometimes, according to the Rheum, a child can develop an autoimmune disease (i.e. JRA) that hangs around for a few months, years, whatever. Then, the child contracts a different virus or something that causes them to be extremely ill with high fevers and the whole kit'n'caboodle (such as John had in December). Somehow the body and immune system almost manage to reset themselves for lack of better words, and the original autoimmune disease/disorder seems to clear up. Hopefully, this is what happened or is happening with John! That would be AMAZING! We have to go back to the Rheum in September/October (as the weather is starting to change again) to have John re-evaluated because she doesn't want to just assume whatever it is/was is gone now just because he's doing well at the moment.
This has been the first set of appointments since we started this whole journey that has had ANY glimmer of hope! I absolutely LOVE his new Rheum. She's amazing, and she listened to every single question and concern I had about John. It's very encouraging to finally have a doctor who is going to listen and try to help us figure out what's going on and how we can help John be a kid again!
Today, John had check-ups with his ophthalmologist (let's call it Ophth for short) and his rheumatologist (let's call it Rheum for short). The Ophth was amazed at how cooperative John was with the tests -- even putting his chin on that little plastic rest and his forehead up against the bar so she could look at the back of his eyes! He does such a fabulous job with that one. I am so proud of him! The Ophth was also amazed that he knew all of his letters and their sounds. Way to go, Mister Smarty Pants! :) She said his vision is far better than what a child of his age should have (we'll thank Daddy for that trait), and the issue with the nerve above his eye has completely resolved itself! They have no idea how or why, but it did! That means **drum roll, please** no surgery!!!! Woohoo!!! What a relief!!!
The Rheum was also very pleased with what she saw today. The warm weather seems to be helping John tremendously. She wants us to take him off his meloxicam (the anti-inflammatory), keep him on the daily regimen of tylenol 3x's/day, and keep a VERY close eye on him to see how he does. We're hoping that his mood swings will subside without the heavier medicine, and maybe just maybe he'll be alright knee-pain-wise without it! She said that it could be one of two things: 1- He does have a very very odd form of JRA that comes and goes and worsens with the cold weather and season changes. Very possible and would totally make sense for him. OR 2 - Sometimes, according to the Rheum, a child can develop an autoimmune disease (i.e. JRA) that hangs around for a few months, years, whatever. Then, the child contracts a different virus or something that causes them to be extremely ill with high fevers and the whole kit'n'caboodle (such as John had in December). Somehow the body and immune system almost manage to reset themselves for lack of better words, and the original autoimmune disease/disorder seems to clear up. Hopefully, this is what happened or is happening with John! That would be AMAZING! We have to go back to the Rheum in September/October (as the weather is starting to change again) to have John re-evaluated because she doesn't want to just assume whatever it is/was is gone now just because he's doing well at the moment.
This has been the first set of appointments since we started this whole journey that has had ANY glimmer of hope! I absolutely LOVE his new Rheum. She's amazing, and she listened to every single question and concern I had about John. It's very encouraging to finally have a doctor who is going to listen and try to help us figure out what's going on and how we can help John be a kid again!
