Sunday, January 9, 2011

Are you going?

We are hoping to go this year! Are you going? It would be a great opportunity to meet some other JRA families as well as see DC with the boys.

Wednesday, January 5, 2011

3 years since uveitis diagnosis

It has been 3 years since Jacob was diagnosed with uveitis. I can't believe that long has gone by!
We have been continuing to see Dr. Foster every 8 weeks. We have clocked quite a few miles back and forth to Cambridge. These visits are very emotionally draining for me. Jacob on the other hand looks forward to a day out of school. Every visit that we go to I feel as though I am as nervous as the last. I can't even imagine what it will feel like if we ever hear the word "flare" again. I think the longer we have gone without cells the more nerve wracking it gets. It is even more worrisome with the med tapering. We have been still continuing to wean off of Methotrexate. He is down to only 5 mgs tonight. In two weeks he will take his last pill of it. I can remember when we were told he needed to go on this drug. It was scary to say the least. Methotrexate is a chemotherapy drug. I was very familiar with chemotherapy with my father having been through cancer, I was fearing the worst with the side effects. The doses used for arthritis are far lower than those used for cancer. Side effects such as nausea, vomiting, hair loss, mouth sores, liver dysfunction and lowered immune-system are possibilities even so. Jacob generally did well with the methotrexate. Initially he had awful mouth sores. The doctor quickly switched from folic acid to Leucovorin to help combat the side effect. We have also been doing blood work routinely, every 1-2 months, to watch his liver for an problems. The blood work has been a pain, but a comfort knowing that if this med was doing anything it would show immediately. Anyway, it will be a blessing to be able to stop this med sooner rather than later.

The appointment today went very well! The fellow we saw today was great! He was so thorough in his exam. He dilated Jacob's eyes today to be able to see in the back of his eyes. He did this because Jacob said that he has been seeing floaters. All was clear in the back of his eyes as well as the front. His pressures were good today also. The right eye was 21, the left 17. His vision was 20/25 both eyes.

February will be his rheumatology visit. Hopefully his joints continue to do well and don't need these meds too long either! I don't think there is any plan to start weaning the Humira too soon though.

Thinking and praying for all of our JRA and uveitis kiddos. Hoping for a healthy year for all.

Saturday, January 1, 2011

The blog list is growing! It is great that there are so many people out there willing to put their child's story out there. Take the time to click on the stories. Juvenile arthritis is very real. There are so many children fighting this awful disease. Awareness, Awareness, Awareness!!! Spread the word!