jia

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lozgirl101
lozgirl101 Member Posts: 16
edited 29. Apr 2009, 05:16 in Living with Arthritis archive
my 12yr old daughter just been dignosed witha rare joint desease
we just waiting for op now to drain the knees and steriods put in hips and knees
if anyone ese goin through the same please feel free to post me back love to ere from you

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  • Jeannie
    Jeannie Member Posts: 29
    edited 30. Nov -1, 00:00
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    Hi lozgirl101,

    I have moved your thread to the Living with arthritis forum as I think it is a better place to put it so that you will get more responses.

    Regards,

    Jeannie2 (forum supervisor)
  • frogmorton
    frogmorton Member Posts: 29,445
    edited 30. Nov -1, 00:00
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    Hi Lozgirl101
    So sorry to hear about your daughter :( I wish her all the luck for her treatment and hope it goes well. You have enough to cope with just bing 12 without this too :(
    Have you had a look on the young person's forum too?
    take care
    toni x
  • stephiey
    stephiey Member Posts: 61
    edited 30. Nov -1, 00:00
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    Hiya, I'm stephanie & I've had JIA since I was 4, I'm nearly 17 now. Sorry to hear about your daughter. Good luck with everything, if u want to ask me anything then feel free to message me.
    Take care
  • colinone
    colinone Member Posts: 1,039
    edited 30. Nov -1, 00:00
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    Hello Lozgirl Not much help i'm affraid but just wanted say hi and you get some comfort from the site. So sorry to hear about your daughter its so sad when the children are ill. Please pass on our regards to her and i hope all goes well with the op. Take Care
    Colin
  • lozgirl101
    lozgirl101 Member Posts: 16
    edited 30. Nov -1, 00:00
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    just let you know shes fine doin well she was very brave still very tired so takin one day at a time thanks for your feed back real help :lol:
  • lors1968
    lors1968 Member Posts: 2
    edited 30. Nov -1, 00:00
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    lozgirl101 wrote:
    my 12yr old daughter just been dignosed witha rare joint desease
    we just waiting for op now to drain the knees and steriods put in hips and knees
    if anyone ese goin through the same please feel free to post me back love to ere from you[/quote

    Hi Lozgirl. I am sorry to hear about your daughter and it must be really hard for her to cope with as well as coming into her teenage years. My daughter was diagnosed with JIA when she was 3/12 and is now 7 years old. She has various joints affected as well as curvature of the spine. She has had the draining and steriods many times now (too many to count).

    What to expect of the op may be that your daughter's consultant may put her to sleep using anaesthetic and the whole op takes around 1 hour. She will feel pain afterwards in the joints and will ache for a couple of days. She is best to rest for a couple of days (as well as recovering from the anaesthetic and then she will hopefully feel the benefits.

    The best advice to you is to keep positive and although hard, try not to let it over-rule your daughters life - encourage her to keep active ie., swimming etc. There is a website called www.kidswitharthritis.co.uk which is excellent and they can also send you a handbook which is invaluable.

    I hope your daughters op goes OK, she'll probably amaze you in how brave she is and try to keep strong for her cause I can imagine you are probably crumbling inside. :)

    Best wishes - if you need any more information just let me know.
  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
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    Hi there,

    Just checked out the link in the previous post and realise there's an error there. It should be www.kidswitharthritis.org

    Looks a great site

    Moderator
    Y
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
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    Hello welcome to the site. I am sorry to hear your daughter has such a nasty problem. It must also, in some ways, be just as hard for you. I hope everything goes well for her and you take care of yourself. Love Sue
  • lors1968
    lors1968 Member Posts: 2
    edited 30. Nov -1, 00:00
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    woodbon wrote:
    Hello welcome to the site. I am sorry to hear your daughter has such a nasty problem. It must also, in some ways, be just as hard for you. I hope everything goes well for her and you take care of yourself. Love Sue

    Thanks Sue - found your site (great site) as there is never enough information on children's JIA and as my daughter has another problem with her stomach now because of her medication she is going to have an endiscopy?? Am so worried about her and hate seeing her in pain - we wish we could take her pain away. She has had the same rhuematologist and physio (the rhuematologist is an adult one) and I feel I need to get a 2nd opinion from a specialist children's hospital - it's just making that decision because she is so use to her specialists.
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
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    Hi,
    I'm sorry shes got tummy problems and needs an endoscopy. The good part of that is, though, if she has an ulcer or inflamed lining to her tummy, she can have medication to put that right before it becomes a serious problem for her. They treat it with drugs quite often, these days. I'm sure they'll sedate her for an endoscopy, so it shouldn't be too unpleasant.

    I know it must be worrying for you all, but I'm sure you'll all feel better when your daughter is feeling better. It must be hard watching her unwell, but at least you're there for her and that will help her a lot. :) It would be good if you could get her treated by pediatric rhuematologist, could you discuss this with your GP? But I suppose that would mean travelling. I'm sure the rhuemmy you see also deals with childredn. Thinking of you, Love Sue
  • lozgirl101
    lozgirl101 Member Posts: 16
    edited 30. Nov -1, 00:00
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    my daughters just been told got jia
    shes had op a month ago was doin really well but shes been bad with her tummy and very tired shes been taken off tablets till shes goes back to docs 2m she feels dizzy headachs and really tired all the time
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