I was really hoping that every single question I had was going to be answered when we visited NIH in Bethesda, Maryland. But sadly this is the reason why the good doctors are doing the research..,to get more answers. You see there is just not enough information on kids who have Juvenile Spondylitis. I was just really hoping that they knew of some new procedure, drug, diet or anything else that would help Bruce. I was told there are a few more drugs in the pipeline but as of right now...nothing for this type of arthritis as well as nothing for kids.
Bruce was seen by a research Dr who took all his information. Then he was checked all over from jaw to Achilles. The Dr then took a pressure gauge and pressed on every joint and around each joint. He then checked for inflammation in every joint. He had mild swelling in his left Achilles and 1st and 2nd knuckles of both hands were swollen. They did a full body MRI which took about 1 hour. They took 15 vials of blood and a DNA test. We then were seen by the gastroenterologist who spent 2 hours with us. She told us that you can not have both UC and Crohns. Which will be an interesting conversation with the Dr who said you could. Bruce may test positive for Crohns but its a false positive but she said unfortunately that he would have to flare again to see the bowel activity and that is a very good possibility because it normally happens at the same time every year you flare for UC. If you flare in Feb of last year..you can bet that you will flare the following year...almost to the day. Why? They don't know. It just does. So we will be on the lookout this February for Bruce. It will be his 3rd flare if he flares in February. They don't know if his flares will get better or worse. Its really such a sketchy disease...especially when you throw the whole arthritis into it. She suspected that eventually a decision would be made to remove the colon. As much as I would like to think this would not happen the possibility is always there. How do you fix something when you don't know how its going to present itself in the future. She was very nice and she would like to follow Bruce and see him the next time we are to come back.
After the gastro Dr, came the research team to discuss there findings. His whole body MRI showed no inflammation. Which is odd because both CT and MRI in the last 11 months showed edema of the bone-marrow and narrowing or thickening of the SI Joints. But the Dr thought this was due to the amount of remicade Bruce is taking and that its every 3 weeks and its helping to keep the inflammation down. His diagnosis as of right now is Juvenile Spondyloarthritis. They will not diagnose you unless they see physical evidence on X-ray, MRI etc. Even though it was there it wasn't there when they looked at Bruces recent body MRI. What he thought was that Bruce has had a lot of Enthesitis...which is inflammation of the joint capsules, ligaments and or tendons to the bone. It is classic of Anklosing Spondylitis. There is tenderness above and below each of his joints that are affected. This can cause extra bone formation thus resulting in fusion to the tendons. Luckily this doesn't always happen. Sleep has a lot to do with the body helping itself, so they had recommended a medication for sleep. When the body is constantly in hyper mode due to pain or inflammation you just don't get a good nights sleep which can diminish regeneration. So that should be looked into as well as reconditioning, which should help his weakness of his left leg. They know this is hard to do. Fatigue and flares come and go but its important to try and very important to stretch. The Chostochondritis is probably due to enthesitis setting in to the chest so breathing exercises are important. I am thankful for the exercises we have done, they really have helped.
We talked a lot about Humira...that is our last medication to try. They do not know why Bruce needs an increase in meds or a change in meds every 3 to 4 months. He doesn't build up antibodies...but they were going to check that again from the lab work. What they do know is that the meds loose there effectiveness. They didn't know why Bruce has night sweats so bad that I change out his pillow. They suspect... but don't really know. The one thing we have to be careful on is the healing of the enthesitis...which to be honest nothing has ever helped that. Bruce has always had that. But this can cause a buildup of scarring. But what the hell can I do if nothing helps the enthesitis. So we will try sleep. Bruce doesn't sleep well, which I found out since we all slept for a week in one room. He tosses and turns and just cant get comfortable. Bruce has problems with the hips and that can be a bit worse for someone who is going in the direction of Spondylitis. They would like to see Bruce in 6 months and follow him. They would really like to see Bruce when hes in a flare. I know that it would be tough on Bruce but he is willing to make the trip for them to check him out. It comes out of your pocket but all the labs, MRI and the drs knowledge are free. They want to get a better understanding of this disease. The drs were great, very thorough, and had all the time in the world to answer questions.
Overall the trip was successful. We have research Drs that are on board with Bruce's doctors. There is no cure for this illness but by being in this research we are able to get a better understanding. I wish there was more to know. There isn't. A woman I was talking to was shocked to find that there isn't a cure. She didnt understand that arthritis is an auto immune issue and that your body is attacking itself. It was hard for her to understand...Its really hard for all of us to understand.