5 year old son recently diagnosed with JIA in hips & wrists

Nix67 Member Posts: 7
edited 29. Jun 2011, 17:21 in Living with Arthritis archive
Hi, someone kindly suggested I post on this forum.
He's been on a high dose of steroids and anti-inflammatories for the last five weeks and will be weaned off all medication over next four weeks to see what happens. Am feeling very anxious and lonely to be honest. I'm not sure what to expect. So pleased to have found this forum. Nic


  • stickywicket
    stickywicket Member Posts: 27,707
    edited 30. Nov -1, 00:00
    Hi Nic,

    I've just put something on the other forum for you!

    I'm glad you've come here. I'm sure you'll get lots of support.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Nix67
    Nix67 Member Posts: 7
    edited 30. Nov -1, 00:00
    Thank you. I just read your kind message. Fifteen is still very young. They said they would 'hit it hard' with the steroids etc which have worked wonders and its made me realise how long he must have been in pain before it really flared up. Now he is being weaned off as they aren't happy leaving him on them any longer. Just got to get used to the idea that nobody knows what will happen once he is off them. It would be so fantastic if he could just stay the way he is now.
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    Nix. I hope all goes well for you and your son. They will have to lower the dose but they will find other meds and at a lower level that should help him. It is a case of finding the right balance.

    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • frogmorton
    frogmorton Member Posts: 29,395
    edited 30. Nov -1, 00:00
    Hi Nic

    good to meet you, but not in the cicumstances :sad:

    I do hope your lad is ok off the meds as they are not good things to be on long term.

    If he has any problems they will be watching closely and will try different meds to keep the disease under control.


    Toni xx
  • julie47
    julie47 Member Posts: 6,041
    edited 30. Nov -1, 00:00
    Hi nic

    Just want to welcome you to the forum and hope that when your son comes off the steroids the rhummy people are quick to find a suitable med that will keep his arthritis under control.
    Take care both of you
    love juliepf x
  • constable
    constable Member Posts: 2,115
    edited 30. Nov -1, 00:00
    Hi Nic,

    My heart goes out to you and your little son. It is very hard for a parent when the child is so young. I am sure you will get all the support you need from this forum. The people on here are brilliant and we will always try to help, if not to just give you support and encouragement.

    Lets hope when they take your son of all the meds that they can find the right one to help him.

    Please keep us informed of his progress and to how you are coping with it all.

    Karen xx
    Karen xx
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Hi Nic
    And a very warm welcome from me, has a parent i bet you would rather it be you, I am sure your son will be closely monitored, and I really do wish him well with his treatment.
    Dont feel lonely anymore, you have us lot if ever you need a rant, or just to talk.
    There is also the young people forum, and there are quite a few parents with children on there.
    And dont forget to take care of yourself.
    Barbara xx
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi Nic
    I'm so sorry....it must be much harder when its your child ......when its you ...you can cope with it better than wondering about them???? Mine are up now but I can only imagine what it would be like if it had been one of them when they were little.
    You take care because he'll need you