How much worse will it get?

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Joanna

Posted Sunday, November 23, 2003 11:44 AM

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Last Login: Thursday, July 31, 2008 12:33 PM
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My 10yo son is newly diagnosed (last week) with poly JRA (hands, feet, ankles). He is completely "normal" except for the classic RA limp and a slight loss of fine motor skills (zippers, cutting up food and tying are hard, but he can throw, catch, play his drums, etc.). He says his feet only hurt a little, and only if he's been walking a lot. His hands don't seem to bother him at all.Our Ped. Rheumy gave us stuff about splints, injections, special camps, PT, etc. and I am a little overwhelmed. Is it going to get so bad he can't walk or run? Does everyone end up with injections? We noticed the limp about 8 weeks ago, waited to see what was up and then started the rounds of doctors. Am I in denial? Some days I feel like this is not so bad (my nephew has MS, after all) and others I feel like I should be doing more for him. Right now we just treat him like his brother -- do your chores, go practice your drum, go walk the dog, etc. Should I be getting him off his feet? (I thought that would make it worse, actually...) Any input from the "I wish someone had told me" department is most appreciated Smile

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CynthiaJ

Posted Sunday, November 23, 2003 12:47 PM

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Last Login: Thursday, July 31, 2008 12:32 PM
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Joanna- I was in the same boat as you a couple of months ago. Some great people on this site helped me get through some tough weeks. My daughter has either JRA and Allergic Colitis or Crohns and JA related to that. We are going for final diagnosis on the 15th and she is 2 1/2. She had her first joint injection last week and she is doing great !!!! She still has a noticeable deformity but limping is down to a minimum. Most people can not even tell anymore. I thought it was drastic but the benefit really worked. Things will get better. I try to treat her like her brothers as well. I think its the best thing to do. Take care Cindy

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Allyson

Posted Sunday, November 23, 2003 1:44 PM

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Joanna, I think that the course arthritis takes is very individual and impossible to predict. Probably your rheum was just trying to forewarn you of possible scenarios. Our son was recently diagnosed with monoarticular arthritis in his left knee and after a steroid injection and a steady dose of naproxen he does quite well. He swims and plays water polo and the only thing that bothers him is breast stroke. He used to run but was happy to give that up! Otherwise he has a great quality of life. Sooo - your son might not progress to anything worse - time will tell. As far as activity goes, unless your rheum restricts something , encourage it! Best Wishes, Allyson

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TerryB

Posted Sunday, November 23, 2003 6:27 PM

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Joanna, I think that the very worst time for many parents in when you are waiting for that Rheumy apt or, worse yet, you are waiting for someone to even suspect arthritis. Now you are in the system so there shouldn't be too much waiting for something to be done about pain and deformity. More joints may become involved by it is very hard to predict whether this will or will not happen like Allyson said. I would try not to treat your son differently. If he is a little sore after an active day it will probably be better by the next day. The physical activity is really important for people with arthritis. I'm not too much into sports that require a lot of jumping but I probably wouldn't stop my daughter if she really insisted. I agree with Cynthia that things usually get better from this point on. Terry

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