my 3yr old recently diagnosed with systemic jia

talli
talli Member Posts: 3
edited 25. Jan 2013, 12:02 in My Child Has Arthritis
hi my daughter has been recently diagnosed with Sjia, we,'re devastated to say the least, she was such a healthy active child and what started with a temp then rash then ? lymphoma resulting in lymph node biopsy to being diagnosed with arthritis!!! she was affected in her ankles, knees, hips and wrists. was started on 20mg steroids (reduced to 15mg at present)and thankfully is symptom free at the moment, apart from her ever increasing appetite and moon face :D . but my question is, will she automatically be started on mtx? think I'm being too optimistic thinking that she,s back to her baseline, afraid of what the consultant will say at next appointment to burst my happy bubble, I know lots of adults with arthritis but no children so feel quite isolated at present xox

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello talli, you poor thing and your poor girl too. She may well be responding well to the steroids but they are not, alas, a long-term treatment. I think this is a discussion for you and her rheumatology team, they are the best-placed to advise. There are many children affected by this disease and, if you get the chance to read through some of the threads on here then you will see that they are on a range of medications. Methotrexate is the usual first port of call and it is not as scary as the publiucity may have you believe. It is used at a very small dose for arthritis and, although there may be side effects it is not guaranteed that they will happen.

    Please keep in touch so we know how things are going, yes? I wish you both well and I hope some hope some mums pop in to say hello to you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hello from me, too, talli. I can empathise as I have a lovely 3 yr old grandson and I'd hate to find he had RA like me. As DD has said, steroids aren't usually regarded as a long term solution as, miraculous though they seem, they bring their own problems if we stay on them for too long.

    Your rheumatologist will decide the next action. None of us like taking these meds and it must be even harder to give them to little ones but she will be very well-monitored while taking them as we all are. I hope she responds well and stays well.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • MumV
    MumV Member Posts: 71
    edited 30. Nov -1, 00:00
    Hello Talli,

    I am sorry to hear about your daughter, that is very nasty for a little three year old, my daughter was 13-14 when she was diagnosed with JIA, it was very aggressive and like your daughter affected 8 joints initially. She had 8 steroid injections initially, which began to wear off after 3 months and so steroids and an increasing dose of Methotrexate was prescribed, steroids decreased and stopped.

    I remember that feeling of devastation and many other feelings, fear, panic and worry about the disease and treatment, and yes isolation, too.

    My daughter is now 20, she is independent, goes to Uni....best of all climbs mountains...preferably in the snow(in the UK), walks rides her bike a little...she advocates keeping happy laughing, being with friends, and keeping busy as the best tonic for wellness....and she is my heroine...I have learnt a lot from her.

    I can't really answer your direct question about how treatment will go as it is different for everyone, but I can tell you children are very well looked after within Rheumatology....very, very well .It's fantastic that your little girl is symptom free and steroids decreased...yipee :) . My attitude towards medicines has definitely changed....

    I now understand it is crucial to get Arthritis under control, without Methotrexate my daughter would not be where she is today, they try to have 2 flare free years before stopping treatment...my daughter is currently reducing her Methotrexate from 30mg as she is having a well spell, she loves her knees, normal shaped again, lovely!!

    Hold on to your Happy Bubble, you will have many more, don't think too far ahead, enjoy this wonderful well spell, do lots of lovely activities. (Have a few rainy day activities up your sleeve !! :D )

    Gradually build up your knowledge base, excellent and reliable information leaflets on Arthritis Care and Arthritis Research sites...and reliable sources, keep asking questions, focus initially on control and keep hope for remission, it can happen.

    The people on this forum are very kind and supportive and can answer lots of queries. I really have appreciated a listening ear.

    Kind regards to you and positive wellness wishes for your little girl, she will bring you so much joy, cherish every moment :).
  • talli
    talli Member Posts: 3
    edited 30. Nov -1, 00:00
    thank you all for your lovely, comforting replies x we had a call from clinic yesterday to say they had a cancellation for today, rhuemy team very pleased with g' s progress, starting on MTX tomorrow! don't know how I feel about it, but it's not about my feelings, I know she will benefit from it just don't like the thought of my baby receiving a chemo drug, albeit a low dose. sort of want to freeze her just as she is now, happy and pain free but I know she can' t stay on the steroids long term. I am forever grateful that sites like this one are available to offload as I sometimes feel that family and friends perceive me as a neurotic mum, but it's just so hard to think of what your child might have to face in the future. well rant over lol but thank you all again xxx @mumv, I'm so glad to hear of yr daughters success and wellness and wish her and indeed all of you all the very best xoxo
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    I really hope the methotrexate works well for your little lass. Of course friends don't understand. People don't understand how it is for adults with arthritis and most people can't even imagine children having it, all the more so if meds are making them look more or less OK. I think you're far from neurotic. It takes real courage to do what you are doing but your little one's welfare is, and has to be, your driving force. I hope her future is a good one. You are doing all in your power to make it so.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • MumV
    MumV Member Posts: 71
    edited 30. Nov -1, 00:00
    Stickywicket is right you are definitely not neurotic.

    You know your little girl the best and people really don't understand.

    Comfort will come to you from the most unexpected people and places, and yes you need that comfort as much as your child, so never feel bad. Don't think too far ahead, take each step, and lots of deep breaths. Kind regards to you, as a parent I know how you feel, it's good for me also to share.

    Thank you for your wishes for my daughter, and positive positive wishes for you.

    Kind regards

    Mum V