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.
OMG, your the first person I have found that is having the same trouble, apart from the mouth thing. My daughter is Aspergers / Autistic and has poss JIA, it's so difficult isn't it trying to understand how much pain they are in and how much pain killers to give them. She has swollen fingers red and had to have her knees injected, that was a nightmare. Good luck and God Bless, it's a trial…
Rob, you might want to look into clinical trials they are doing of using low dose naltrexone for juvenile arthritis. It is a very safe option for autoimmune disease with almost no side effects (safe for kids as well), and regulates the immune system. It may help his fever disorder as well and can reduce the severity and frequency of both. The clinical trials should be located on this website: http://www.ldnscience.org.
Rob, Great question. As a father of a daughter with JRA I started writing out a bunch of questions until I realized that there is a lot that I have to share. I have decided to turn this into a full blown blog post over at blog.friendshipcircle.org. Check it out first thing tomorrow morning.
My recent post Weighted Blankets: 13 Stores to choose from
Awesome, very nice to meet you. If you want, add yourself to my blog roll. Click on the blog link exchange at the top of the page. Thanks again.