JIA related to STILLS disease? My son gets so ill

katescott
katescott Member Posts: 2
edited 10. Apr 2012, 06:00 in My child has arthritis
Hi,

I have a 3 year old son who was diagnosed with JIA at the age of 1 and a half. His under Great Ormond st which is an amazing hospital, but my son often (once every 5-6week) becomes really ill with, high temps, sickness, rash and has been admitted to hospital a number of times becasue of this. Gt ormond st thought it could of been a food intolerence< result showed there was none so he was admitted for an endoscopy and colonoscopy. but results showed there was nothing wrong, His consultant at GOSH now think his JIA is stills disease and this can be the affects/ I just wondered if anyone had any similar problems?
He gets so helpless when his JIA flares up and he becomes so ill. his very pale and is so tiny for his age. Any help would be really appreciated

Kate

Comments

  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    Hi Kate,
    Sorry your little lad is suffering so.
    Don;t know much about Stills, though septic arthritis can give the symptoms you describe, also SLE (lupus) . Have you had the subtype of JIA clarified?
    What tretments is he on? How are his joints at the mo? You are being cared for by an excellent centre so that's reasurring but I find being informed about exactly what we are facing, and reading up as much as possible enables you to asak the right questions at clinic and have a better understanding of what lies ahead. They say knowledge is power and that, in my opinion is never more true than in the setting of JIA.
    Happy to chat any time you need to. Take care
    Sam. x
  • chrisieCL
    chrisieCL Member Posts: 11
    edited 30. Nov -1, 00:00
    Hi there... Sorry cant help with your problem but just wanted to send a big hug to you as I cant imagine how worried you must be. It is hard enough for us adults. So here's to you brave parents looking after the little hero's :)) Chrisie x
  • anita01
    anita01 Member Posts: 43
    edited 30. Nov -1, 00:00
    Hi Kate,
    Still's disease is the name given to adults, In kids its Systemic( Onset )JIA. It does present with the fevers and rash and anaemia. My daughter is always sick with a high temperature, so the vomiting may be a red herring. Is your son under one of the Rheumatologists at Gosh ? if not then get your consultant to refer you. My daughter was diagnosed after an episode 3 years ago, and we are at Gosh too. We had to try several meds but now she has infusions every 4 weeks and they are working very well. There has been a lot of new research and treatments licensed for SOJIA, and it is well recognised by the specialists that it acts and is caused by different mechanisms to the other sub types. It also is very changeable , even through any one day. Contact Arthritis care for their latest info leaflets, we and other families contributed to these last year. I hope he gets on some regular meds soon, and starts feeling better ,

    Anita , xx

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