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Date: 20.10.2011
From: lisa

Subject: negative results for 7 year old

hi, i am looking for some advice, my 7 year old daughter has has joint pain for nearly 2 years, the pain is in both ankles, both knees, hips lower back and recently her wrists.she has numerous days off school, because she cant get out of bed and walk, the pain is so bad. she has a high temp when she gets the pain, her joints are hot too touch but arent always swollen.
her soctor sent her for tests for ra e3tc and all has come back negative. her doctor has said that she doesnt have any form of arthritis as it wouls always show up in a blood test, so possibly she is making this up....i was totally gobsmacked when he said this,she sits in her bed crying because she cant join in with her friends and because she doesnt understand why she is in so much pain. he said that there is not really anything else he can do, he doesnt think its worth sending her to a paedeatrician. she has been having trouble with her eyes lately.
i really dont know where to go from here, i cant leave her the way she is it breaks my heart.id be grateful if anyone has any advice xx
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Date: 20.10.2011
From: Sue

Subject: Re: negative results for 7 year old

Hi Lisa,

Think maybe you need to go & see another GP in your surgery for a second opinion. I don't think he can leave it like that.

She should at least be referred to a paediatrician as the GP is not a specialist. I'd would push for a referral and let the paediatrician investigate further as a GP can only do so much investigations.

Have you heard of Juvenile Fibromyalgia? There's more research being done on this, unfortunately in the USA and little in the UK and sometimes is not taken seriously, depending on GP, Consultants etc.

Not saying that's what is wrong, but good to have it ruled out or her symptoms further investigated.

Here's a link for further reading if you wish, from the Fibromyalgia Association UK.

http://www.equinox-consulting.co.uk/files/fmauk/temp/Childrens%20Booklet300609_secure.pdf
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Date: 20.10.2011
From: lynnr

Subject: Re: negative results for 7 year old

that is awful i would def go and get a 2nd opinion i have pa(psoriatic arthritis and fibro)and when i was getting a diagnosis it was difficult as my bloods were coming back negative for immflamation it wasnt until i went to rhumatolagist that i was finally give the diagnosis i would ask for a refferal amd if they say it is not arthritis then at least you have had a 2nd opinion, heres hoping it is not arthritis such a shame for little ones to be suffering this pain..... ket us know how you get on TC
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Date: 20.10.2011
From: Paula-C

Subject: Re: negative results for 7 year old

Hello

From what I understand about RA is that you can have a sero negative diagnosis (that's when it doesn't show up in your blood tests) or a positive one when it does.

From what you say it sounds like it may be Rheumatoid Arthritis, in children it is called JRA, what with her swollen joints etc. Obviously I may be wrong but at least talking to someone about things might help. You may find the following telephone numbers helpful.

http://www.nras.org.uk/ (National Rheumatoid Arthritis Society.
Helpline 0800 298 7650

If I was you I would also look on the Arthritis Care Site, they have an open forum and there is a section there for parents of children with arthritis, it is free to join. http://www.arthritiscare.org.uk/forums/
Ring their helpine up 0808 800 4050

I've just re read what you put about her eyes. I too have had trouble with my eyes, they were so dry and ached, this too is part of having RA. I remember feeling so stupid telling my consultant about my eyes the first time I saw him but found out it is one of the symptoms.

Perhaps once you have rung the helplines up and have more information about things, go back and see your GP. RA according to my consultant is difficult for a GP to diagnose, they may of never seen anyone with it before.

Hope something gets sorted soon and please let me know how you get on.

Paula x
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Date: 20.10.2011
From: kirst

Subject: Re: negative results for 7 year old

get a referal from a differant doctor because she cant go on like that poor thing.
Makes my blood boil that adults have to fight for referals never mind when i child does! gggrrr.

All i can say is if your gp wont refer to a specialist then see a differant one and failing that speak to your health visitor for advice.

then for me the final push to be listend to would be to carry her into A&E next time she is so ill she cant get herself out of bed and in pain.

sorry you girl is going thru this. x
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Date: 20.10.2011
From: davina

Subject: Re: negative results for 7 year old

hi lisa i'm so sorry your lil girls going throught this without support from your gp.
like everyone as said you need to get another gp's opinion or a&e as kirst said.
i do believe your gp doesn't really know what his talking about when it comes to your daughter you know she is not faking it or lieing.

so hope you get some help for her. x
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Date: 21.10.2011
From: marlene

Subject: Re: negative results for 7 year old

Just read your post, sorry your little one is unwell. Saying Arthritis shows in blood is not true, there are many forms of arthritis that only show under MRI or CT scans. I beleive like the other guys on here second opinion is what you need. Why would any GP leave it like this???I hope you get some answers real soon love to your little one!!! Take Care.
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