recently diagnosed

sadie84
sadie84 Member Posts: 16
edited 6. Dec 2012, 12:27 in My child has arthritis
My son was diagnosed with systemic jia on the 28th of november, it is still all new to us, my son as had a high temp, rash swollen joints and is unable to move is neck, the day he was diagnosed he was prescribed prednisolone and methotrexate plus other meds, at first we was relieved to know what was wrong and not to have the what ifs, we do not +know what to expect? i was told about this site by my sons nurse, if any one could say what i should expect it would be great full because at the moment i just dont know what to think,
sorry about the rambling but i just dont know what to say or think at this moment,

Comments

  • MumV
    MumV Member Posts: 71
    edited 30. Nov -1, 00:00
    Hi,

    You posted on my daughters 20 th birthday so I had to reply, she was diagnosed 8 years ago with Aggressive JIA, so I can't share an experience of Systemic JIA, but I can share the feelings as a parent. I remember that feeling of relief, and then confusion, and staying positive for my child, it works and it does help.

    http://www.arthritiscare.org.uk/PublicationsandResources/Youngpeopleandfamilies, this is the link to some of the helpful pink leaflets that helped me try to understand things in my own time. Find out about the methotrexate, but don't scare yourself, my daughter perseveres with the sickness feeling on the day she takes it ( they may prescribe frolic acid for the other days).

    My first thoughts for you are, it's good that they have started to treat your son the main thing initially seem to be to get the condition under control, this is really important. Rheumatology are wonderful, they really look after children, they want the condition controlled and pain abated. So things can be normal, wrapped in care, careful planning of activities, but not cotton wool, because that is what as a parent you want to do.

    I wish your son well, it is vey early days for you, you will be surprised at where comfort and support comes from, as there are only 15,000 children and young people with arthritis our children are quite unique, my initial support came from friends with children who had, Cystic Fibrosis, Autism and cerebral palsy, they were familiar with children taking medication and hospital consultants nurses etc it was really all new to me.

    Kind regards to you, keep asking question on all your trips to hospital, esspecially in these early days, everyone seems busy, but this is an important time.

    I hope your son is soon feeling better as the medication starts to work. Take care.

    Mum v
  • MumV
    MumV Member Posts: 71
    edited 30. Nov -1, 00:00
    This is the details of the leaflets and the help line at Arthritis care in case you have not spotted it yet, I copied this from their message.

    "LEAFLETS

    My child has arthritis
    My child has oligoarticular JIA
    My child has polyarticular JIA
    My child has systemic JIA

    To talk to someone about JIA or if you would like a copy sent to you please call our Helpline Mon-Fri between 10-4pm. 0808 800 4050
    Or private message us with the full details of your enquiry.

    Best wishes

    Shital Shah
    Helpline Team Leader"

    Good luck with everything, kind regards.

    Mum V

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