JIA??????

[Becsy]

Hi, my daughter is 12 years old and 18 months ago started experiencing pains and spasms in her left knee. We went to doctors and was told that it was bursitis. This pain went after about 2 weeks. Then about 7 months later she had a knock to the knee, then the pain came back. She had an x-ray and was told by the doctor in A&E that there was a hairline crack. We then went to the fracture clinic the next day to be told there was no crack!!The pain went again after a couple of weeks. 2 months later the pain returned. She had numerous x-rays and an mri scan.

She was admitted to the childrens ward for 3 days. She saw numerous doctors - including an orthapaedic who confirmed there was nothing he could do as the bones were healthy. The Rhumatologist saw her and said that it was JIA.

She had a steroid injection in her knee in August '10 and this helped. After 9 weeks the pain and spasms returned again. So she was given another injection in November. This only lasted 5 weeks.

She was admitted to hospital last week for 3 days. She has been seen by the Rhumatologist, Orthapaedics and Physiotherapists! But they are now saying that it may not be JIA but are unsure what it is!!

At the moment she is taking Diclofenac, Codeine and Diazepam. We are now waiting for a referal to see a specialist pediatric rhumatologist at another hospital!

She is being very brave about eveything but is in a lot of pain and is struggling to go to school. This week she has been experiencing pain in her other knee!!

Has anyone else been in this situation??

Thanks

Becsy

[PeteC]

So young, so brave ... my heart bleeds for you.

RA can happen at age it seems. If it does turn out to be Rheumatoid Arthritis then you could not have come across a better forum than this one for advice and support ... x

[sylvi]

I don't have an answer to your problem, just sending your daughter and you my best wishes.

sylvi.xx

[Becsy in reply to sylvi]

thank you x

[PeteC]

Most members are female (so they can ramble on a bit) but hey ...

[Hidden in reply to PeteC]

WHAT!!!??

[Beth58 in reply to Hidden]

ha ha ha

[Hidden]

I just don't know enough about JIA, which I think is Juvenile Inflammatory Arthritis, of which RA is one.

Probably the NRAS help line would have some info or help you find more.

Inflammatory Arthritis can strike at any age, and from what I understand it is treated much the same as RA. All the best, please stay in touch and let us know what you find out. Loret xx

[Beth58]

Hi

My daughters long time friend, went through the agony of having a child with constant pain and no answers from a variety of doctors.

Her baby started crying constantly at about 6mths, by the time she was 2 she'd been diagnosed with Juvenile Idiopathic Arthritis. She's 4 now and has regular steroid injections which have helped sadly mum is still in a bit of a state. They had lots of hospital visits and many doctors before diagnosis but luckily she was eventually diagnosed and treatment began.

I do hope your daughter gets a diagnosis soon.

Beth x

[Becsy in reply to Beth58]

Thank you.........this has been going on for 18 months now and she's just about had enough bless her. We just want a diagnosis so we know what we are dealing with

[nurumassage]

i feel that when everything has flared up no painkiller can touch it.

[Becsy in reply to nurumassage]

I know what you mean. The only time she seems to be pain free is when she's had the diazepam and zonked out in bed!!!!! The physio has told her that she needs to try and take her mind off the pain......how on earth does she do that?!! Easier said then done .

[Hidden]

So sorry to hear about your daughter.. so young!, I was wondering if the physio meant activities that she enjoyed? though that comment she made doesnt seem overly helpful in th cold light of day!

She needs a diagnosis xx

[Ailsa-NRAS Partner NRAS]

Hello Summer

I am sorry to hear about the pain your daughter is experiencing. It may or may not turn out to be JIA (JIA is distinctly different to RA and there are 6 or it may be 7 different types of JIA). The very best person you could see to try and help you determine whether or not it is JIA is a specalist Paediatric Rheumatologist. There are much fewer specialist tertiery centres for JIA than there are specialist units for RA in the UK. From memory are you based in the South West? Sorry I can't remember which area you are in, but there are specialist JIA teams in the following areas: Bristol, Oxford, Nottingham, Birmingham, Norwich, Liverpool, Newcastle (there are others but I hope one of these may be accessible to you.

Just to keep you up to date, we are in the process of setting up a JIA service and working closely with the British Society for Paediatric and Adolescent Rheumatology.

I hope it turns out not to be JIA, but I can tell you that outcomes today for children and young people with JIA are hugely better than years ago and in children, the team's goal is nothing less than remission.

Good luck and I hope this is of help.

Ailsa

[Becsy in reply to Ailsa-NRAS]

Hi Ailsa,

Thank you for your comments.

I am in Norfolk and hoping to hear from the Specialist Paediatric Rhumatologist in Norwich very soon. I just keep waiting for a letter to come through the door or for the phone to ring. It's just horrible having to wait for an appointment.

Becsy

[Ailsa-NRAS Partner NRAS]

My apologies - my comments above should have been addressed to Becsy not Summer!

Ailsa

[Ailsa-NRAS Partner NRAS]

OK, I know Kate Armon, the Paed. Rheumatologist in Norfolk and in fact am working with her and others who are trying to set up a clinical network across the region. She's very nice and I do hope you get your appointment soon. Let me know outcome.

Best wishes

Ailsa