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Son of 12 recently diagnosed with JIA any advice? :))

LeahcLeahc Posts: 2
edited 5. May 2013, 17:59 in My Child Has Arthritis
HI I'm the mum of a very active 12 year old boy.
After a fight with flu just before Christmas and an awful time with temperature and joint pain my son was diagnosed with Arthritis,leaving my son distraught and all of the family not knowing how to feel other than OMG!
We are due to attend Jacks first appointment in April at Rheumatology and are all anxious at what to expect next. Since diagnosis Jack has been given Diclofenic,codeine and paracetamol...none of which seem to ease pain long enough and leave him feeling nauseous and with awful headaches,he does take them with food but still feels the nausea.hearing from other parents with similar anxious thoughts would be fantastic....feeling a little lost.

Comments

  • MumVMumV Posts: 71
    edited 30. Nov -1, 00:00
    Hi Leahc,

    Sorry to be chatting with you under these circumstances :( . I know exactly how you feel and reading your message brought all those feelings rushing back to me..........nothing worked, your child is in pain and you feel helpless:(..

    3 things I would like to say at this point:

    1) put your feelings in a box....just for a little while

    2) do everything possible initially to get your sons Arthritis under control, Rheumatology staff and hospitals are fantastic with children, a whole team approach, a wonderful cushion of support. Medications can take a while to settle, and there can be ups and downs. (Never underestimate your sons pain).

    3) and this is important, set your mind for your sons future as positive, my daughter was diagnosed at 13/14 and is now 20 and is doing amazingly well, truly amazing, and positive wishes for her.

    I have posted previously about "hospital visits and school and JIA, I think there may be a few emotions in there too, but I hope the practical tips come through.

    If there are any specific questions I can answer, please ask. Also Parent to Parent TLC I give to you, take care.

    For your son as always wellness wishes, great control, remission or a cure.

    Keep asking questions, you will be amazed where comfort comes from, places and people you never thought, take care.

    Kind regards MumV
  • jiamamajiamama Posts: 6
    edited 30. Nov -1, 00:00
    Hi,

    I'm so sorry to hear that you son has been diagnosed with JIA. My daughter was diagnosed last summer and it was a real shock. We went through all the highs of lows and disbelief and I know what you must be going through right now.

    My best advice would be to do as much research as possible, so that you are fully clued up about the condition, drugs, possible side effects and where you can get support. These contacts were particularly helpful to me and I have contacted them on numerous occasions to ask questions, get information and general advice:

    Children With Chronic Arthritis Association (CCAA) http://www.ccaa.org.uk
    Contact A Family http://www.cafamily.org.uk
    Arthritis Care helpline 0808 800 4050
    Patient.co.uk (for medical info)

    Of course this thread is incredibly helpful too. I wish you the very best.
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