How cute is he? Who can believe summer vacation is ending! The kids go back to school on September 2. Jacob will be going into 5th grade this year. He is going to a new school. He is getting pretty excited! I, am a little nervous for the change for him.
I know that we are very lucky Jacob's arthritis has been generally very mild. (If you forget the huge knee surgery he needed for the very advanced arthritis in his knee.) He has been well controlled in general now. I read a lot on the Juvenile arthritis message boards and I see many of the kids are not so lucky. There are kids who suffer daily with pain from this disease. I pray that Jacob keeps on responding to the medications and doesn't go down that route again. In case he does though, I want the school to be prepared. I want the school to be informed ahead of time so if something pops up they will understand his limitations.
Oh, a tonsil update: We are still waiting for a consult at the hospital in Boston. Jacob just finished a week of steroids and another 10 days of an antibiotic this past weekend. Guess what happened? Within a few days his tonsils swelled huge and he is struggling to eat and talk again! I am probably going to call the pedi tomorrow and have him seen to probably start him on another round of steroids. Ah yes September 17th can't come quick enough. Speaking of school issues, surgery in the first month of it might be a problem.
This blog is about my son Jacob. Jacob has Juvenile Arthritis. He was diagnosed soon after he turned 5. He is now 13 years old. His journey started with me noticing a limp and a swollen knee. We were referred to a pediatric rheumatologist soon after. Initially, Jacob just complained of his knee hurting and being stiff. He received cortisone injections in May of 2004 and was weaned off of the Naproxyn he was on, soon after. All was quiet with his arthritis until January of 2008 when his knee out of nowhere was swollen again. He had some problems with his fingers and ankles as well. He was started back on Naproxyn and scheduled for a eye exam. At his routine eye exam he was diagnosed with uveitis. Uveitis is a eye disease that is caused from Juvenile arthritis. Jacob sees a uveitis specialist in Cambridge, MA every 8 weeks. His eyes have been cell free since June 2008. He was treated with the combination of Methotrexate 17.5 mg and Humira 20mg every other week. He has not been on steroid eye drops since the springtime of 2008. Beginning in the summer of 2010 we began to taper the methotrexate. He began to take it bi-weekly. He was tapered off the med completely as of January 2011. His joints have remained relatively quiet. This past February 2011, he was found to have some stiffness/inflammation in his hip. He also continues to have a couple of swollen toes as well. He is pain free at the moment and continues to take only Humira for meds. Jacob is considered to have Extended Oligoarthritis. UPDATE: July 22, 2011 An MRI confirms arthritis in both hips. Humira 40mg will be given weekly. He has no pain in his hips. But is having pain in his heels. Update: December 2012 Back on "Humira. Eye flare up, knee swollen and MRI confirms again arthritis is active in his hips. Update: Feb 2013 Failed Humira. Joints and eyes flared and he isn't responding to Med. Started Remicade Feb. 1, 2013.