Hello - Newly diagnosed but took 8 years

barleysuga Member Posts: 3
edited 20. Jun 2010, 16:12 in My child has arthritis
Hi All, i have finally just got my 13 year old diagnosed with JIA after 8 years. Its been a long battle with the doctors but a move from Dorset to Somerset and after 4 trips to the new Drs and a demand for a consulatants referal we now have the most amazing consultants who have agreed that she most certainly has JIA and will need rehabilitating. She is now on steroids for 6 weeks and Methotraxate weekly. She has taken for one week and her joints are much better and is able to walk around without hobbeling. Just a bit worried what will happen when she comes off the steroids in 5 weeks time but, just want to say a big HI to everyone and finally can now get the much needed help she needs. So i will be back for lots of advice and tips from this forum.



  • speedalong
    speedalong Member Posts: 3,300
    edited 30. Nov -1, 00:00
    Hi Barleysuga - well done for keeping on fighting until you got your daughter the treatment she must have needed so badly. That was quite some battle!!

    Less folks read this forum so if you have questions about meds, symptoms etc post them on the living forum ... I don't know much about this form of arthritis, but dreamdaisy has been posting about these meds. Hopefully the meth will be in her system and beginning to work by the time she comes off the steriods.


    PS welcome to the forum - you will find it a wealth of information and a good source of support.
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    it's such a pain and worry when the dr's tell you it's nothing, or it's growing pains etc etc, I've not had that long a wait for diagnosis but it was still acouple of ttrips to the dr's with my now 4 year old. She was given steroids before the MTX kicked in. I was told not to listen to the sheets when it said 3 weeks for them to start taking effect, took almost 6 weeks for them to kick in and now we're 6 months in and she's doing really well on them. Flare ups are way less than they used to be and she moves easier. She still won't walk very far, not sure if afraid or sore think the latter as now when she's eager she will at least try and do things unlike before.

    I hope that things progress for you now. My daughter is currently on MTX injections, ibuprofen and paracetamol. Then 3 other types of meds just for side effects from mtx and ibuprofen.

    take care
    Michelle xxx
  • barleysuga
    barleysuga Member Posts: 3
    edited 30. Nov -1, 00:00
    Thanks for your lovley welcome Speedy!

    I am sorry about your daughter Michelle bless she sounds like she is really going throught it and as i know, if she is you are too. Its like you go through as much pain and heartache as they do, when they can't walk and you have to carry them or pumping them full of painkillers.

    I am so glad you have got the diagnosis in good time. We had actually got a diagnosis when she was 3-4 years old as she was limping and a consultant took one look at her and said she has JIA but later that week she became ill and went into hospital with spiking fevers and tonnes of other symptoms but when we came out after 4 weeks they retracted the diagnosis and said she had a virus, we were very confused and so was she. We battled on for years taking her back on each flair up but each time i got the same response 'oh come back in two weeks if shes not better' or we will do a blood test and everytime her RA would come back negitive. The last 4 occasions her feet swelled up so badly she could not walk for over two weeks and then her hands, she had strange bumps on her knuckles and boney bits on her hands and they said she had chillblanes, twice!! And the worst one she couldnt move her shoulder, a different doc saw her but we where in there for about 1 min and he said shes fine off you go!! I feel i have lost faith in GPs now and even the consultants we have seen over the years but just thank god we have now got the help she needs. Our new consultant did lots of blood test and showed she was ANA positve, not sure wot that means to much but said it helps to build the diagnosis.

    Also wanted to ask you guys about physio and what it entails! We have one coming to the house this week.
    Barleysuga x