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

Options
Nix67
Nix67 Member Posts: 7
edited 8. Jan 2012, 16:09 in My child has arthritis
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 x

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Options
    Your poor lad and poor you too, this must be a horrid time for you. I don't have children but often pop in on here to see how the little folk are doing, their mums too. This arthritis malarkey is a ghastly disease for all of us, but especially so for the youngest members of the forum. Arthritis affects everyone in the family, it spreads its ripples far and wide. I hope some of the other parents spot your post and reply. You could always post on your own behalf on the LWA forum, living with arthritis: more people tend to hang around there, I am sure people would reply if they felt they could offer you support. I wish you both well, I'll keep an eye open for your name on here! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • andylamb
    andylamb Member Posts: 41
    edited 30. Nov -1, 00:00
    Options
    Hi Nix,

    You are not alone. If they are trying to wean him off the steroids and NSAIDs then I presume the symptoms have all gone?

    Have they said what type of arthritis it is? Poly or oligo etc.

    If the symptoms do come back don't panic. It's horrible for all concerned as you're going through it but there are loads of drugs out there these days to control arthritis. If steroids and NSAIDs are working that's fantastic news as it means you don't have to move onto the others.

    In the meantime there's generally someone who's been in the same situation as you around every few days or so. There's also a Facebook group of parents. I've not posted there myself but I do lurk: https://www.facebook.com/#!/home.php?sk=group_12131682883

    Ask any questions if we can help we will , and feel free to vent - we all do!

    Cheers,
    Andy
    (Mother of 7 year old girl, JIA for 5 years, in remission for 18 months :-))
  • Nix67
    Nix67 Member Posts: 7
    edited 30. Nov -1, 00:00
    Options
    dreamdaisy wrote:
    Your poor lad and poor you too, this must be a horrid time for you. I don't have children but often pop in on here to see how the little folk are doing, their mums too. This arthritis malarkey is a ghastly disease for all of us, but especially so for the youngest members of the forum. Arthritis affects everyone in the family, it spreads its ripples far and wide. I hope some of the other parents spot your post and reply. You could always post on your own behalf on the LWA forum, living with arthritis: more people tend to hang around there, I am sure people would reply if they felt they could offer you support. I wish you both well, I'll keep an eye open for your name on here! DD

    Hello Dreamdaisy. Thank you so much for your message. I will have a look at the other forum. Such a relief to have found somewhere where people understand.
  • Nix67
    Nix67 Member Posts: 7
    edited 30. Nov -1, 00:00
    Options
    andylamb wrote:
    Hi Nix,

    You are not alone. If they are trying to wean him off the steroids and NSAIDs then I presume the symptoms have all gone?

    Have they said what type of arthritis it is? Poly or oligo etc.

    If the symptoms do come back don't panic. It's horrible for all concerned as you're going through it but there are loads of drugs out there these days to control arthritis. If steroids and NSAIDs are working that's fantastic news as it means you don't have to move onto the others.

    In the meantime there's generally someone who's been in the same situation as you around every few days or so. There's also a Facebook group of parents. I've not posted there myself but I do lurk: https://www.facebook.com/#!/home.php?sk=group_12131682883

    Ask any questions if we can help we will , and feel free to vent - we all do!

    Cheers,
    Andy
    (Mother of 7 year old girl, JIA for 5 years, in remission for 18 months :-))

    Hi Andy,
    So please that your daughter has been in remission for 18 months. Just goes to show how little I know about it all. I didn't even know it could do that. They said they would treat any further flare ups with steroid injections into joints under general. The consultant said it might flare up immediately or take a few months. Not ever would be better. So anxious wondering what will happen as we take him off the drugs. He has been on fantastic form since he has been on them. We've only had a couple of days where his hip has really hurt him. I felt very alone with all this. Thank you for being there. Kind regards,
    Nic
  • stickywicket
    stickywicket Member Posts: 27,712
    edited 30. Nov -1, 00:00
    Options
    Please, Nic, whatever you do don’t feel alone. There are plenty of people here to help you through any bad times though, as DD said, there are more of us about regularly on the LWA forum. (You are living with it every bit as much as the rest of us.)

    I didn’t have arthritis as a young child (I was 15 on diagnosis) but, once it arrived, did have long periods of remission.

    This must be a very scary time for you. Any change is difficult. Undergoing things ourselves is much easier than having to watch our children undergo them and trying to stay calm for their sake. I do hope your little fellow is, indeed, in remission and all will go smoothly. If not, remember we are here. Don’t do the bad times alone.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • andylamb
    andylamb Member Posts: 41
    edited 30. Nov -1, 00:00
    Options
    As StickyWicket said, don't feel alone. It is horribly lonely when you're going through it. I remember searching the internet 5 years ago when me daughter was first diagnosed.

    Hopefully your son has the one bout and it never ever comes back. That is possible and it does happen, and it's the most likely outcome for children diagnosed with oligoarticular JIA - 70% make a full recovery with no recurrence. I'll keep my fingers crossed that that's what happens for you.

    If it does continue you'll discover more and more as you go along. Even 5 years in I still find out more things that are new to me.

    I strongly believe (just a personal belief - no proof) that the docs deliberately don't give you too much information of what MIGHT happen because in the majority of cases it doesn't. They could scare you silly by saying what might happen in a year or 2, but if 70% of the children who present at initial diagnosis as oligo are completely clear in 2 years then what is the benefit it giving the worst scenario.

    If this will be helpful here's my anecdotal personal experience of what happened to us. If you think it will just be depressing and not helpful stop reading here....



    Initial flare - treated with NSAIDs (naproxen, Ibuprofen, piroxicam) and oral steroids.
    Flare didn't die down - Steroid injections into joints. Continued on the NSAIDS
    2nd flare, different joints affected - back on steroids, then joint injections again. Still on the NSAIDs
    3rd flare - more joints, including one of the original ones. More joint injections. First suggestion of going on Methotrexate (it's a chemotherapy drug taken in really low doses) we turned it down as the joitn injections worked well for our daughter and stayed on the NSAIDs
    4th flare - More joint injections and we agreed to start the MTX
    5th flare - Just one finger joint. Did a steroid joint without a general anaesthetic - Never again! Stayed on the MTX
    6th flare - more joint injections, this time in the jaw - which scared the pants off me. Stayed on MTX
    7th flare - more joint injections. In new and recurring joints. Moved onto Entanercept (Enbrel)
    Since the Enbrel not one single flare. It doesn't work well for everyone, but for my daughter it's been amazing. It does have side effects her immune system is weakened, but been hospitalised with chickenpox and has constant infections and cold etc - but it's better than arthritis.

    Good luck,
    Andy
  • Logi
    Logi Member Posts: 5
    edited 30. Nov -1, 00:00
    Options
    Hi nix. I'm new and just browsing all the forums. I am happy to have found this as well. Not sure if you're still around but I hope everything went well for your little one. It's always hard when our little ones have to be so courageous and fight diseases. I'm sure it will make him stronger in the end though. Well wishes :)
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Options
    Hi Nic,

    Just wanted to say hello,and send best wishes to you and your little one. I'd encourage you to keep the school up to speed with your sons condition so that they can make necessary adjustments in his classroom life. Most teachers won't have any experience of childhood arthritis so they will depend on you to share his needs and struggles. I teach 5 yr olds and really do appreciate the expertise that parents share so that I can offer every child the best possible experience.
    Wishing you both well, every blessing

    Deb x
Back to top

Categories