Saturday, September 15, 2012

Trip for Research

Well it sure has been a long week....with the increase of Bruces Remicade to 500 mg every three weeks and his MTX injections....(he did it all by himself...YAY Bruce)...he went down hill fast and needed his wheelchair cuz he was unable to walk...then by Tuesday he was getting better. Thursday night he said he felt very good like a 3...the stiffness in the upper back was gone but his lower back still is stiff. We had physical therapy on Tuesday to work on weakness in the hip/girdle area.we have been doing stretches for Anklosing Spondylitis and I feel that this has helped him greatly..well as I'm writing this I'm thinking...well if its working why did he go downhill....nature of the beast...he gets worse before he gets better. Bruce wasn't in his wheelchair long this time. PT says that any stretching will help. So pool and stretching will help...and I saw results.

We went for an MRI on his SI joints on Tuesday....was a bit afraid of the i didn't pick up the report until Thursday. Bruce has periarticular sclerosis along the SI Joints on both sides. This is not good. I called the radiologist and he said it's uncommon to see this in an 11 year old boy. Normally it's in an older adult from the ware and tear on the body... there is narrowing in both SI Joints. This is because he has arthritis in his spine. In December we had an MRI of the lumbar area...this showed inflammation and
fluid along the left SI joint and i have no idea what this means...annular fissuring? Forgot to ask that one. When this happens fusion can take place, but why is it happening in a child of 11. And it seems to be progressing. UGH!

This whole week I have been on the phone with National Institute of Health. Bruce is a candidate for research. We leave at the end of next month.'s a little scary to put your child in one of these studies. It's called a natural research. A doctor studies kids like Bruce for years and then works closely with his doctors. It's just getting another chief in the mix. Juvenile Spondylitis is not common among the Auto Immune illnesses as well as having Ulcerative Colitis to go along with it. So when were up there a lot of procedures will be done and hopefully some won't have to be done because they are scary...I get scared just thinking about it. Skin biopsy, joint aspiration, bone marrow aspiration..they get into the genomes and DNA and are trying to figure out why it's coming up. They will check my daughter as well...I also see if there is genetics playing a role in this... as well if it can be passed down to there children. The study will go on for years if we keep up with it". A lot of times these kids are not followed for a long time...leaving town, college, the more kids they have to watch over the years the better understanding they have of the illness and how it will progress....he will be checked out by a Gastroenterologist, Pediatric Rheumatologist and an Ophthalmologist. We fly up there for 4 to 7 days. I'm just so happy that he will be watched's the way I look at it. Plus, if this can help prevent another kid not to have as much pain as he has been through. I'm for it. It's a puzzle and I'm thankful for being a part of this research...even though I'm
scared as hell. Bruce on the other hand says....Hell Ya...let's do it. Our peeds rheumy Dr N set this up and I'm grateful.

I am so thankful that I have these medications that can make him feel somewhat normal, except for the exhaustion from the MTX and the very bad ulcer in his mouth. He feels so much better that he doesn't care about the brain fog...I try not to worry about the amount of crap I'm putting in his body...but what choice do I have. I try not to worry about the future...spinal fusion, heart problems, what life will hold for him in the
future...with this research maybe will see a rainbow.

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