Jodawson
member
Reged: 24/06/2009
Posts: 1
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My little girl is 3yrs and 9mths old, she was diagnoised with JIA Sept last year, she has now had 3 bad flare ups, x2 lots of steriod injections into 5 joints, plus been taking oral methotreate for 9mths with limited effect. she has started on weekly injections but is currently ill and not able to have her medication. I feel isolated especially at times like this as people try to understand but obviously don't. Is there anyone out there who has gone through this or is going through this? would love to hear from you jox
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Elsie
member
Reged: 05/01/2008
Posts: 3378
Loc: Scotland
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Hi Jodawson, I am so sorry to hear about your little girl. That is a very early diagnosis. I was diagnosed aged 7 and had it particularly bad between ages 7 and 9 - couldn't go to school cause in those days there were no lifts and I couldn't climb stairs. If I needed the loo at home, my dad had to carry me as we had no downstairs toilet.
Hopefully your daughter will go through quite lengthy periods of remission. Apart from a nasty time in my 20s, my arthritis has been manageable. Even toyed with teaching aerobics some time back!
I think treatment has come on leaps and bounds since I was a kid (no longer a kid at 43!). I had some hideous medicines to take, most of which I couldn't keep down. I still don't like milk or jam cause that's what they used to mix my medicine with to make it more palatable!
I'm sorry I can't be of much help re todays treatments. Am actually waiting for my rheumy consultant to call me back as I've a bothersome knee at the moment. However, like I said earlier it's not been all bad and..........it's a good excuse to get out of the gardening!
Welcome to the forum and give the wee one a big cuddle from me. She's being very brave.
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Elsie
member
Reged: 05/01/2008
Posts: 3378
Loc: Scotland
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Hi again, I just wanted to add that you are doing a great job. There is nothing worse than seeing your child in pain and being powerless to help.
Perhaps the next time you are at the docs/hospital you might want to ask if there is a support group for mums?
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DebBee
member
Reged: 09/06/2008
Posts: 21
Loc: Lancashire
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Hi
I was diagnosed with this at an early age and had the injections, medications etc which was not pleasant - so I feel for both you and your daughter.
I have lived on a concoction of garlic & cod liver oil capusules (high strength) every day and as well as watching what I eat - certain foods will make it worse - and I have managed to keep going.
Some advice that was given to me was to always make sure that I watch my weight and keep up with any exercise I was able to as this would help.
Over the years this advice was invaluable as I swim at least once a week and am still able to take part in badminton. Yes it aches afterwards but the fitter I am then the less it hurts. Last time I went to the athritis specialist she was pleased that I was still as mobile as I am at the old age of 50. I do have to take pain killers and anti-inflamitory drugs some days but not as much as others.
I hope that this helps - there are support groups for this problem and if you google it you should be able to find a group in your area.
If I can be any other help, just let me know.
DebBee
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Jane_09
member
Reged: 08/01/2008
Posts: 3119
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Hi Jodawson, I'm so sorry you are going through this. I'm afraid I don't have any personal experience of JIA, but I've just looked it up on the internet and found a discussion forum you may want to look at if you haven't done so already.
http://arthritisinsight.com/forum/forum_topics.asp?fid=11
Keep posting on here though because the ladies are very supportive. Please don't feel isolated because there are people out there who want to help you and offer you thier support. As Elsie had said, speak to your GP to see if there are any support groups in your area.
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MrsBucket
member
Reged: 29/09/2007
Posts: 475
Loc: Kent
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Hi
my YD was initially diagnosed with irritable hip when she was 4 and after several bouts of this was diagnosed with juvernile arthritis in her teens. She is now 26 and manages this but I know that at times it gets her down. Fortunately it is not too bad and certainly not as bad as your daughters.
She is now being tested for rhematoid arthritis as it seems to be getting worse. She is reluctant to take too much medication as she doesn't want to get immune to it.
DebBee's advice is excellent as my D does have problems with her weight and I know this exacerbates the problems but it is difficult to exercise when you are in pain. Swimming is excellent for this.
Good luck with your daughter and stay positive, there is so much they can do with medicines these days and developments are always happening.
Any time you want to offload or escape from the issues come on here as there is always someone to talk to.
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Jan49Marshall
member
Reged: 26/06/2009
Posts: 4
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Dear Jo
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.
Thinking of you
Janet
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SueEllen
member
Reged: 02/09/2008
Posts: 254
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Hi Jodawson
I have psoriatic arthritis and can recommend this website, they also have a young person's forum, obviously your daugther is too young but a lot of parents do post on it for support.
www.arthritiscare.org,uk
I hope they can find a treatment to help her soon. I do know MTX can take months to really get into your system and they like to increase the dose gradually. I've just had steroid injections into some joints too and it's so painful, I feel for your little one as it must be so much harder to deal with at such a young age.
Best wishes to you and I hope she get some improvement soon.
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