I took Bruce to Cincinnati Children's Hospital and met with the Gastro, Surgeon and the psychologist there. Bruce got to swallow a pill cam to check out his small intestines and to rule out Crohns Disease which we can't because he tested a little bit positive for it. The pill cam showed no irritation in the small intestines but a blood test showed that he also has some inflammation due to Crohns. Both surgeon and gastro said you can have both. Really? There is a test that will confirm Crohns but there is no test to confirm Ulcerative Colitis. I was very lucky to have both doctors at the same time. Surgeon said that a lot of times the colon is pulled only to have continued pain and inflammation in the small intestines...This is very hard to hear. There is a type of Crohns that doesn't show up on blood tests or when biopsied...but because he tested a little bit positive we are waiting for another flare. We know that Bruce has gastro issues but to try to decipher which one and what were going to do about it remains a question. Bruce still had pain in his gut when we were there...it was going away but it was about a 2 on the pain scale. Gastro was going to put him on Neurotin. It helps with pain in the healing process. Neurotin is given for a lot of different health problems.
Saw the psychologist who confirmed that Bruce does have some anxiety and that EMDR is very good for him as well as the biofeedback he does. Who wouldnt. Hes been through hell. He was very quiet but spoke to her when questioned and this Dr said Bruce handled pain head on. He doesn't hold it in. He just deals with it. This was a good way to deal with traumatic events. This just made me cry...it's just too much. He took a surgery to remove his colon, wear a bag for 8 weeks as a positive outlook. Accepted it and had mentally prepared himself for what he was about to go through. Only to be swept out from under him and to be told it's not going to happen. You would think he would of been happy but its still looming over his head. It's a very good possibility it will happen in the future. So you cant be completely calm...On anything. Never know when your going to flare, bleed, hurt, not get out of bed. So all these thoughts never go away. That's a lot for a 10 year old to handle. By the time we left for home Bruces gut pain had subsided and little did I know he was entering the beginnings of an Arthritis flare.
The day after we got to Cincinnati Bruce started to get stiff. He didnt tell me. I didn't know. I was so focused on the UC/Crohns. He was short tempered. Couldn't sit still, hyper, and angry. I took it all in stride...thought it was the aftermath of what he has been through and the exhaustion of the plane trip. Now my son doesn't get like this. He's very good natured...but he was just hyper and it didn't take much to set him off. Over the weekend my husband and I just thought he's getting his frustrations out. I sat down with him and he just fell apart. He just cried. No words just a break down. We sat together for a while...me still not getting it...then he told me..."Mom, I've been hurting" and I'm stiff when I wake up in the mornings. Oh he cried. He didn't tell me up in Ohio because he thought he just was doing too much and he knew his Remicade infusion was coming up and was hoping that would take care of the pain and stiffness. This is why he was mad.
The following day was Monday and we called Dr Ns office to see if we could up his remicade infusion which he OK'd. We still are at every 3 weeks but at 400mg. Started Bruce back on Celebrex. Didn't help and by Wednesday night he was unable to get up and used his wheelchair full-time. We just ordered him a new wheelchair, the sports kind. He wants to be independent as much as possible so the rigid type wheelchair would make
it easier to move. Normally I would see weakness and pain in his girdle, SI joints, knees and shoulders. This was new. His lower spine hurt and he was unable to pull himself up on the wheelchair. When he stood the pain in his knees was just too much. As much as we hated to.. he is back on prednisone, hoping to squash the inflammation. He was
able to walk by Friday afternoon only to be let down Saturday afternoon which he was unable to walk again. Needed assistance getting out of bed Sunday morning...but was able to walk by Sunday afternoon. Its a constant roller coaster ride!
I had taken my daughter Katie to the theater Friday night and my husband called to tell me Bruce had pain in his chest. Tramadol did nothing to help and the pain was gone on Saturday but he was very sore. Late Sunday afternoon the pain returned and thanks to reading up on it was assuming it was Costochondritis. But his left breastbone is a bit swollen? So, his left breastbone and sternum was in pain and it hurt to press down on it. At the bottom of his ribs on his left and right was two indents. It looks odd. I can't confirm that it's Costochondritis until someone looks at it. Bruce was very uncomfortable when he went to bed. He just got up and says it's feeling better. No pain but very sore where his ribs are. He is always so happy in the morning but as the day goes by he's exhausted by late afternoon. He just told me his knees were less stiff as well as his back. After Tuesday we will try to taper. He can't be on prednisone for more than 2 weeks or he will get pressure on his optic nerve...so we have to watch
carefully. it's nice to see him smile. Bruces birthday is July 3rd. He will be 11. I hope he's able to feel better by then. He's getting a surfboard. Bruce has very good balance when not in a flare. It's amazing what water does for him. He will just have to take it slow. He can surf when he feels good. He's an amazing boy. We would like to get him a therapy dog. But he's allergic to dogs. So I need to do my research. Going to look at labradoodles and even sheepdogs. He's not much for friends. He would rather be on his own...he's always been like that. He does his own thing but he wishes he had a dog. I would like to give him that.
My quiet time is over. It's a Dr appointment for me this morning then take Katie to theater. Katie had an audition last week for Oklahoma! And she made it! It's a very intense 5 week workshop. She will be one of the youngest in the workshop. The musical is in 4weeks! Yeehaw!
Bruce was taken to ER last night (Tuesday). I was 99.5% sure it was Costochondritis but Im not a Dr...Yesterday he had trouble breathing like he had just finished a sprint and pain...me being worried took him to ER. It would be the one time I didnt take him and I would kick myself later. Heart is fine but has acute Costochondritis...he does have swelling but doctor thinks its due to his arthritis and didnt think it was Tietzes Syndrome. He was surprised that he is on prednisone and celebrex and still came up with type of pain. Going to try Neurotin (Gabapentin) to see if it helps.