Hi JayTeee,
Yes, I think it's strange he feels best in the morning too. I emailed his rheumatologist at Stanford children's hospital and she says that sometimes happens. She also says his MRIs show signs of back arthritis (I think they don't want to say AS, though there are other types of back arthritis) We have another MRI in about a month and she said we will know more then. I read that AS progresses differently in kids than in adults. I feel like they are doing absolutely nothing for him except waiting for him to deteriorate so they can get a diagnosis. Some activities really seem to make it flare especially stairs and high impact activities. We just got a new PT and he is awesome. When my son finishes a session with him he is at zero pain and one day he was at a three walking in the door. So maybe the wrong kinds of activity are bad but the right kinds help. He was on naproxen for about 6 weeks and I don't think it helped that much. It did take the edge off. He still had some really bad days while on naproxen. He is better now on the NSD than he was on naproxen. I wish I wouldn't have put him on that for so long. Still holding out hope it isn't AS but his positive response to the NSD isn't comforting, also it must be inflamitory if diet is working.
