dd diagnosed with systemic idiopathic JIA.... Any one ?

[bendybrickpumpkinpatch]

11 year old dd has been horrendously ill for about a year really. FInally admitted to hospital end of November last year for constant 40 degree temp and rashes. After two weeks of iv antibiotics and " we havent a clue " she was transferred to Great Ormond Street where she stayed till end of January. Discharged after two weeks of physio ( she could no longer walk ! ) and on steroids.
We were told yesterday it was highly likely to be the systemic version of JIA as her blood infection rates are increasing again and the rash is back. We are reducing the steroids and as we do her symptoms get worse.
We are back at Great Ormond Street to talk about her treatment options and well, what happens next really ??
Ive googled extensively and sometimes it sounds really scary and other articles make it sound more manageable.
All I know at the moment is that shes in constant pain, her tempreture goes up and down, covered in a rash all the time and so so tired.

Any one have any experience ?

She was in hospital for a total of about 8 weeks. Shes so scared about falling behind at school etc and the talk of flare ups and readmittance from the Consultant yesterday has really scared her. :(

Sorry to hear about your DD's potential diagnosis Bendy. Our DD was diagnosed with oligo and then poly JIA when she was 6. She started out with one sore knee and within a few months was having diificulty walking. It eventually spread to 5 joints. We had trouble initially getting a diagnosis but eventually landed at GOSH for steroid injections and then they took over her whole treatment from our local hospital.

The injections are supposed to provide temporary relief and worked very well for DD. About a month later she started on a weekly dose of methotrexate (20mg) taken in tablet form. The medication has been successful to date as she hasn't had any further flare ups.

She was diagnosed with uveitis shortly after starting the medication which is basically inflammation of the back of the eye. It can't be seen without specialist equipment so check when they will test her eyes. She had to have three types of eye drops for a few months until the methotrexate bedded into her system and then the drops stopped.

She is now in remission and off the medication so we've been very lucky I feel. She was on methotrexate for just about one year.

GOSH have been great. I particularly like the consultant (Lacassagne) and the ophthalmologist is apparently best in class so your DD is in the right place. I hope she overcomes the fever quickly. She's likely to need a lot of appointments so may need time off school but I'm sure she will manage that if the school are supportive.