Sudden change

In January my youngest son came down with a sudden high fever and rash. He was very sore and tired but little other symptoms. His pediatrician said it was a virus and quickly dismissed it. After 6 days we went back in. They did several tests and ultimitly sent him to the ER to see an infectious doctor. He spent 9 days in the hospital with constant fevers, underwent about every test possible, and was finally diagnosed with systemic onset juvenile idiopathis arthritis.

They immediately began treatment with steriods. They worked well but had extremely unpleasant side effects including "roid rage" and extreme weight gain. He was switched to anakinra after a month and we began weaning the steroids effectively and added on methotrexate. As a mom, all these meds are terrifying! Anakinra is a daily injection and my 3 year old was not a fan. He would scream and cry at just the thought of shot time but it worked great and he had few symptoms from any of the meds.

At the doctors suggestion we tried stopping the daily shots after a couple weeks on methotrexate. After 1 day off he was in poor shape. Fevers and rash came back with a vengance and this time he could hardly walk. When he would try his legs were so stiff it looked like tgey were wooden. Fortunately he started back up on shots after a week and his symptoms subsided.

Recently he switched to a monthly shot of Ilaris. This medicine has been a miracle. All his lingering symptoms went away. No more swelling or pain at all. Even better they send a nurse to do the injection for us sinve the med requires complicated mixing.

This journey has been quite a roller coaster and Im sure we arent at the end. He sees the rhuemetologist every 3 months and the optometrist every 4. I coildnt be more pleased with the care he got in the hospital, from his pediatrician, and his specialists. I hope that the miracle of these drugs can force his disease in remission.