Our trip to NIH was bad and good. Bad because it was exhausting and Bruce was at his worse which makes it hard on him. Good because I left NIH with a new direction and purpose. This trip was for both of us. On the surface, I expected to get answers and to help my son feel better. Both Bruce Sr. and myself were already thinking that Bruce would start on Humira which would be the last medication for both Spondyloarthritis and Ulcerative Colitis. We were worried that like the rest of the medications this one one would stop working after about 3 months and we would have to start putting medication cocktails into him so we could keep down flares from both diseases. Remicade was no longer working and the amount of Remicade going into him was at its max. As for myself, I was a second thought. I came along for the ride maybe to help my son through me in any way possible. If I could shed some light on myself maybe we could put that to good use for Bruce. Boy was I wrong. I learned a lot from this trip.
When you go to NIH there is a lot to do... admissions, papers to sign, exams, x-rays, Full Body MRI's, blood work and finally hopefully some information from the team of doctors. You come in on a Monday and you leave on a Friday. Its exhausting and I fell apart. I was so emotional. I felt like crying every step of the way. I think maybe I knew deep in my heart that I wasn't going to get any answers or any solid facts. and I didn't.
I was and still am so tired of different thoughts from different doctors. The doctors that I saw in Florida for myself all said that I had some type of Spondyloropathy. X-rays all showed problems and I was even told to start Humira. At NIH? They couldn't see anything, so to them I didn't have arthritis??? Oh but they did tell me to go see a podiatrist. I have high arches and maybe that was my problem. The Dr even said don't go home and tell your husband that I am sending you to a podiatrist. I had already started MTX which helped my hands but another doctor said it would not. They told me that the Gluten Free Diet would not help and I thought it wouldn't but it has. I have been over 100 days of eating Gluten Free and I have minimal aches and pains. My hands don't hurt anymore. I stopped the MTX injections.
As for Bruce...lets just say that I was an emotional wreck because they could not offer me anything new. They wanted Bruce to stay on the Remicade because they felt it was doing something because the MRI showed no problems in his SI joints, no fluid, swelling inflammation...nothing. His labs were normal except for blood in his urine. Your supposed to have 0 to 2 and Bruce had 147 RBC. This he gets often and can not be explained. They were afraid of changing to Humira due to the possibility of a flare of his UC due to the change of medications. They saw him get in and out of his wheelchair, they saw him fatigued with stomach ache and some enthesitis. Again they thought it was due to Pain Amplification Syndrome. I was told that if Bruce started the Amitriptyline nightly that that would greatly reduce the stomach pain and the pain amplification...which I thought was just another dumping ground when they don't have any answers. Bruce has been on Amitriptyline for a few months now if not longer and it has helped with sleep but not stomach pain or pain from his muscles. They could not tell me why he has so much weakness in his girdle area. They didn't know. Again with the pain amplification because x-rays were showing no inflammation in the SI Joints. His stomach pain and pronounced constipation was from IBS. They did tell me to see a podiatrist because Bruce has flat feet and that would be contributing to his back problems which made sense but not to the extent of him being in a wheelchair and fatigued. When we talked about the worry of trying Humira and it being the last medication and that I was afraid that it would stop working within three months, one of the Dr's had wondered if any of the medications had worked at all. The Dr had explained that when patients experience a placebo effect on new medications its about a 3 month time period that the patient subconsciously thinks that its working. When Bruce was taking Oriencia it would of not worked immediately like Bruce said it did. It takes 6 months to work. Bruce was upset. He thought that we might of thought he was lying and they had to explain that he wasn't it was his body that wanted the medication to work...he wanted to get better. I left there crying and a mess. I was so confused and wondered what we were doing the last 3 years. I was scared.
SO...the big question...Does he even have Juvenile Spondyloarthritis? The Dr's say Oh yes, he does and the Remicade is really working with both diseases. We will send you down to Rehab Medicine and get checked out for there thoughts on orthotics. This was very eye opening. If I didn't ask to have Bruce checked out for orthotics Bruce would still be in the same place that he was before our 2nd trip to NIH.
The Dr at rehab medicine thoroughly looked over Bruce. He took me aside and said that he felt that Bruce didn't look like a child with JA. He shook his head and said he looks like he has a muscle disease. He told me to see a podiatrist for orthotics and to see a physiatrist. I was leaving the next day. I felt at the time I had accomplished nothing. They gave me nothing. I know I'm supposed to go there to help in a study...to help them understand but I wanted something back too! The more I thought of those last few days the more upset I would get. It took time to process all of it. By the time I got home I was mad. But I was going to go in a different direction. I was tired of all the different answers from Dr's who told me themselves that they only know what they see. If you put several different Rheumatology Dr's in the same room, each Dr would have their own opinion. That was not very reassuring.
On the ride home from the airport I had made my mind up to see some new specialists. We would go down a different path for Bruce and hopefully get some answers.