Hi there, I was just reading under the introductions that you have a son with juvenile rheumatoid arthritis, and I wanted to share with you that my son, who is 8, was diagnosed with systemic JRA in July of this year. I am still learning about this disease, and would love to share information with you! I hope to see a response from you soon!

By Kaye on Monday, December 1, 2003 - 12:57 pm:

Hi jodes...just checked in here. My son is also 8. He has Pauciarticular JRA. Although there was some thought of his being systemic in the begining. He was dxed last october, so we have had a year to deal with it. I am still learning too! Nice to have someone else with a similar story. How did you find out about your son?

By Jodes on Monday, December 1, 2003 - 04:45 pm:

Hi again!! I was glad to see your response!! 3 years ago my son had legs pains and was limping on and off, so bad that at times he refused to even walk, then it would go away, and then a few weeks later, he got a strange rash, but the doctor at the time said it was an allergic type rash.Then he came down with a sinus infection, was put on amoxocillin, and a few days later, he came down with another rash, a fever, and he couldn't walk or barely move! At the time, we switched doctors because the doctor we had was so busy he wouldn't see my son, and he was so sick at the time! So, this new doctor began suspecting the possibility of JRA....so blood work was done, but there was nothing conclusive. He put my son on oral prednisone and in 5 days, my son was fine, and he stayed fine until this past 4th of July. At that time, he came down with a fever of 104 with no other symptoms, until a few days later, he had the rash and he couldn't walk or barely move. His fever was spiking to 105 and motrin was barely taking it down. His doctor was out of town for a week, so the doctor on call that we saw was testing for everything he could think of, and nothing was giving us any answers. Finally, his doctor was back, and right away he suspected JRA again...so after almost 2 months of iliminating every other possible diagnosis, he was diagnosed with sytemic JRA. His left lung became affected as well as his heart, both became inflamed. He is now doing really well! He is taking prelone and methotrexate injections weekly, we are slowly weaning him off the prelone now and so far so good! He is even playing on a basketball team. Sorry this was so long, we went through a horrible summer, but I was glad we finally had an answer, even though the answer wasn't what we wanted, it was better then what could have been! How is your son doing? I credit our pediatrician and the rheumatologist for how well my son is doing. Post soon, and if you want, you can email me too!! IDmommy97@hotmail.com

By Kaye on Saturday, December 6, 2003 - 09:04 am:

I keep forgeting to look at this board. My son came home from school one day with his right knee about the size of his head. After a trip to the er, xrays, 2 weeks in a wheelchair, two weeks in a brace, he was finally dx. I guess one of the things that helps to diagnose is that it last for more than 6 weeks. I felt very fortunate to have the dr and the facilities that we did and got him diagnosed so quickly. The issue with him is he cannot tolerate the meds, it hurts his tummy something fierce. So we took him off and really must prayed. The swelling kind of went down as it swelled, suddenly. He always has just a touch of swelling in his knee now, but it doesn't seem to effect his range of motion. With pauciarticular we have to get his eyes checked every four months, so we know that we have to watch that very carefully. I have real ups and downs with this. I know there is a chance that he may be just fine. He may have a few flare ups and have issues on and off. But he may be horribly crippled by time he is an adult and that really frightens me. We just moved and left the dr that I really loved. The new one seems okay, but I HATE where her offices are located and how the whole hospital system works. But it is a children's hospital, which means they are the only game in town