Does anyone have a child that suffers from juvenile rheumatoid arthritis

stolt

Hi my youngest child who is 17 months has had a rash on her skin which our local GP diagnoised as a skin condition and didnt take us too seriously this has been going on for about 8 months although about 2 months ago, she couldnt walk on her left leg, she was admitted to hospital and had scans, x rays, blood tests etc and we were left to go home. she has been back for futher test and about 2 weeks ago she had the same problem with her leg. We instructed a private doctor to look at her and he said he thinks its juvenile rheumatoid arthritis, but due to the nature of this disease, it can take on many different forms and said its best to wait for the results from the NHS hospital.
Our daughter went to have her eyes checked as part of the ongoing tests, but she is gradually getting worse, she hardly walks at all now, and just sits on the setee pointing things out, its really breaking my heart thats shes in so much discomfort. They have given her ibrufofen (sic) and some iron syrup as she is anemic (sic). as i say since she has had the test she has got worse, it use to be that she would have bad days and we would notice she woudlnt walk much but its been a constant two weeks now, she does not sleep at night and cries out often waking every 30 mins to cry out and my wife can settle her only to be woke up again a bit later.

My wife has been reading up alot about it on the internet and i cant bear to hear it, i'll worry about it when it has been formally diagonised, but i know i'm kidding msyefl and she has it, to what extent i don't know.

My wife read that the ibrufofen can be given constantly whcih we started from yesterday, before that we were onyl giving it to her when she was really bad. If anyone has any advice/tips, experiences etc, i know myself and my wife would love to hear from you, feel really helpless at the moment and as a dad i want to be able to protect her and make sure she doesn't suffer anymore.

thanks

stolt

just to up to see if i can catch anyone that knows someone that has it and how they deal with it.

thanks

lin473

I'm sorry to hear about your daughter.
I have a 'special' little boy myself , but not with this condition.
I know how it breaks your heart to see them suffering though.
Try posting on www.specialkids.org
You will need to register,but that doesn't take long and there is usually some-one who can advise.
Hope that helps.

Savvy_Sue

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