New to this site....I know exactly how you feel. My son went from being a hyperactive 7 yr old back in 1996 to a very ill boy in a wheelchair after 5 days - following a Salmonella food poisening attack. Turned out it was reactive arthritis - - then turned to pre-runner to spondylitis. I know how it feels to be totally isolated with all this - no one knows about it or understands the severe pain they are in and how helpless you feel in the middle of the night when they are in so much distress - also the way the illness is so unpredictable, good one day, bad another for no apparent reason. Some days I used to feel that people thought we were making it all up!!! They never saw the reality of the situation.
Luckily we had great care at hospital - my advice would be keep making them listen and fight to be referred on if you are not happy....We eventually got refered to Prof Southwood at Birmingham children's hospital - this changed his life - he had to go thro all meds - methotrixate made him very ill, eventually he got onto Enbrel and its changed his life - he's now at uni. They tried to bring him off it last year but he ended up in hospital with a hip flare up so he's back on his injections now.
They do learn to cope and it makes them very determined young people - we found that physio helped - have given up on diet as he'll only eat what he wants to ! Ice packs, massage, wheat bags, best for soothing when the joints are flaring, dyclofenac gel. Reflexology helped Joe when he was really bad, to relax more than any thing. Other homepathic remedies we found did nothing at all. Tho I take glucosomine and think it helps keep my achey joints at bay.
Hold on in there...childrens chronic arthritis assoc helped us too, we went away on a family weekend and it was good support and he met others with the same condition who encouraged him.
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Re: my daughter has Juvinlle arthritis (JIA) is anyone else trying to cope
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