After reading more about
JRA, I don't really have any doubt that my son has it - thankfully I think his is fairly mild right now and I'm hoping that catching it early will also be helpful. I will definitely look into the Arthritis Network you mentioned. The pediatric rheumy already gave us info and an application for a camp for kids who have arthritis.
One of the biggest things we are working on right now is what you mentioned about
helping my son be more aware of his body and when he needs to take a break or rest a little. I don't want to discourage activity, but he doesn't slow down until he collapses and feels physically sick. I read the a lot of kids with JRA have problems being aware of their pain and fatigue. I can usually tell by looking at him.
I am so grateful that he is responding so well the anti inflamms and PT. He still has a lot of morning stiffness and has a gimp to his gait, and usually collapses by the end of the day, but he doesn't complain nearly as much about
pain. We are working on the things you recommended such as helping him use warm baths, heat, foot massage, and ice to help him feel better - baths feel really good to him.
Today was the last day of school until fall, so I'm going to do some reading and hubby and I can set up a meeting with school before he starts in the fall and talk about
his illness and any accomodations that might have to be made, especially during flares. He also gets sick really easily (strep throat, flu, etc) and I read that sometimes parents can keep an extra set of books at home. Any suggestions about
what to talk to school about
I also had a question about
shortness of breath. He's had it for a while and I keep forgetting to talk to his pediatric rheumy about
it. When my son tries to run he gets very short of breath and says he has trouble breathing and it really scares him. He came home from baseball practice the other day in tears because the coach had them run and he got really short of breath. I'm planning to make an appontment with his pediatrician about
this. I wasn't sure if it could be related to JRA or if it might be something else.
Thanks again, Erin. I might e-mail you if anything else comes up. I really appreciate your help.
Diagnosis: Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985
Meds: Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain
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