Son has Juvenile spondylitis

Hi...my son has Juvenile Spondylitis....and ulcerative colitis. His current meds are remicade 300mg every 3weeks, MTX every Wednesday 5.0, celebrex 200mg, asacol 800mg once a day. Tylenol when needed, tramadol when needed.

Ya I know a lot for a 10 year old...the UC is under control...but his JS is a problem to control. We have been on prednisone and had to get him off due to glaucoma. Then Full dose of MTX, then Enbrel, then oriencia and theyball stopped working at 5 months exactly. Have been on Remicade for 9 months..but it started failing in October. First legs tired, then enthesitis, then stiff in joints then lower back and SI joints...started every three weeks in December and put his remicade to 300. No RA, no Hlab27 neg...no uveitis. Fatigue a lot...and stiffness comes and goes when tracking humidity ,barometric presure and lowered temp...thank goodness we live in Florida.

He is seronegative in all labs...always have for the last 2 years. His infusion was yesterday and for the first time his sed rate and CRP was high. He has never been over a 10 in sed rate but CRP always has been <.5. It's now 2.4 and his sed rate is 25.... Is this odd? For someone to be seronegative and then all of a sudden this is high. Also his ABS monos are 1.3 and his% monos are
19.4...which are all high. His color is off too, a bit sallow...red and white blood count with in means....he has his good and bad days....since taking the celebrex Dec 31 in combination with the remicade that wasn't working up to par this has heaped and feels much better...so I don't u derstand why his labs are up. I know they can be higher than that...but it's not true to form with my
son... Every once in awhile his legs/ pelvis/ hips hurt and become weak to the point of not being able to stand on them...weakness only...kind of like being stuck. Neurologist checked him over...bloodwork and muscle biopsy was negative for all muscle diseases...MRI was normal for the back...doc wanted baseline???? And Im still asking for a MRI of his SI joints..a baseline would be very helpful and would show any inflammation...going to ortho to get his opinion next month. Just wondering if anyone has any feedback on anything I wrote.....thanks

thanks for your reply...the Neurologist was befuddled....No EMG because he was going straight to the biopsy. No blood work detected anything...he spoke to another neuro and they both decided along with his peeds doctor to do biopsy. After biopsy came back fine...He sent me to Rheumatologist. It took 6 months but the Rheumy took one look at him and said he had Juvenile Spondyloarthritis/spondylitis... Yes i will be asking for contrast Galium...But he gets "stuck" every so often when meds are not working up to par or need adjustment. The last time was 8/9 months ago when we started Remicade. His Dr said that the first dose he gets worse b4 getting better and thats what happened. Stiff, couldnt get out of bed...but if you think about it...if you stay in a position for too long.... laying on couch or getting up from bed, you do get stuck. not always but in a flare etc... Its gone again and hes good, fine...we are doing some exercises in the pelvis hip area to help with weakness, and hes doing well. Had a hard time at first but I read Dr Hahns book on AS..THE FACTS...and his exercises are helping.

Thanks..I will