Monday is the long awaited trip to the Rheumatologist for Emmett. Emmett was referred a little while ago by his Immunologist. As many of you know, Emmett has been diagnosed with Autism as well as a fever disorder. Basically, Emmett runs a fever about every 2 or three weeks. The fevers are accompanied by a mouth full of huge -and I mean that literally, they are huge- cold sores.
This lasts about a week or so. He had surgery last year to remove his tonsils and adenoids because they are thought to be linked to this disorder. While it did help, it hasn’t eliminated the issue. In some cases it has even gotten worse.
Anyway, at his last followup with the Immunologist at Akron Children’s Hospital, Emmett was referred to the Rheumatologist. Immunology believes he might have Juvenile Rheumatoid Arthritis.
Emmett has been complaining about his joints and his hands frequently become very, very warm and do some of his other joints.
We have been waiting for this appointment so we can, hopefully, get some answers. All we want to do is get him any help he may need. Because of his speech and language delays, he is very difficult to understand. It’s difficult to know what he needs or what is wrong.
My question to all of you is this. Have any of you had to deal with Juvenile Rheumatoid Arthritis? Are there any specific questions I should be sure to ask? Are there any treatments that we should avoid and why?
I’m just looking for anyone to share any experience they may have with this disorder.