Hello!

[traci0523]

My name is Traci and I have 2 little boys, Christopher is 7 and Ryan is 2. Ryan was diagnosed with Systemic JRA when he was 10 months old. He had rashes and fevers for over a week, which then prompted his hospital admission. It was scary. Everyday a new set of docs came in with a scarier potential diagnosis. We went through discussions of possibly kawasaki disease, leukemia, histiocytosis, chemotherapy, and test after test. After 2 extremely exhausting weeks at University, the rheumatologist was called in, as all the other diseases were ruled out. All the while, I had just started working on a new unit and was afraid of losing my job and benefits since I was at the hospital with my baby, and told my nursing instructor to withdraw me. She basically said that was absurd and refused to let me quit. I didn't know what was going to happen, and could I handle this sweet baby and his new health problems, work full time and continue nursing school. Well, I tell you, I did it. Didn't like it. Wasn't easy. But I did. Ryan came home from the hospital and was an infant again. In the body of a 10 month old. He was almost walking when we were admitted, but wouldn't roll or sit when we came home. And he would not eat anything that resembled baby food or sleep in his crib for weeks. This was truly a traumatic experience for him, as for us. He had some developmental delays, and we have had an educator and slp come to the house, and they are great!! My husband has been wonderful through all of this. Ryan has been doing well on the methotrexate and prednisolone, up until recently. Last week he had lab work which was slightly higher than previously, and wouldn't have caused any concern to his Rheum, but he has been having fevers and rashes again. We had to increase the pred again, which bummed me a little, and I was really nervous because he hasn't had a real flare to this extent. I feel helpless when he tells me "hurt" or he has a 104.8 fever and the motrin isn't kicking in yet. From this forum, I would like to gain confidence and knowledge, support and a place to vent. I have not coped well through all of this and thought I didn't need a support group. I have been holding this in too long, and people just don't seem to understand unless its their kid. Thanks for listening!!