polyarticular juvinille idiopathic artheritis

gemster105 Member Posts: 4
edited 22. Jan 2019, 05:42 in My child has arthritis
my daughter was diagnosed with pjia when she was 2 she is now 11 years old she started off on steroids through a drip and was put on to methatroxate by tablets then injections by her father she used to get bloods tests once a week also the medicine worked wonders for her and you couldnt tell she had it so was taken off the medicine after 2 years she was in remission as they call it and then a year and a half after she stopped the medicine she had joint injection in her knees which was fine so we kept to our appointments still on no medication which is good then in 2017 she had joint injections in her elbow ankle wrist so last year Georgia has been struggling with tight hamstrings the backs of her knees so the phsio at rvi is adament she needs to exercise.which is very hard but she trys and our local physio came to see her at her worst last month and sent them a letter which was misplaced for 4 weeks until i phoned and wondered why no 1 had been in touch with an earlier appointment than march she states its not for physio she needs medicine but the last few months Georgia is really struggling i have photos of her swollen knees but the consultants are saying its mechanical and to keep moving about i wondered if anyone else is going through this as its very upsetting to watch its as if they are saying she is telling lies i thought if it was mechanicle it would be there all the time this is in bouts which is why i thought it was a flare up as she can do anything at all after a week until the next time she is missing school and we have to wait for ultra sounds why havnt they done all this before


  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi gemster105
    welcome to the community and I am sorry to hear your daughter is having such a rough time with her knees and it does sound like a complicated situation. It must be extremely hard to see your daughter in so much pain. We do have a section on our website about information for parents. https://www.versusarthritis.org/about-arthritis/young-people/
    We also run activities for young people as well as family events. To find out more please email our young people and families team on [email protected]
    I am sure our members will also support you at this difficult time for you and your daughter
    Best Wishes
  • gemster105
    gemster105 Member Posts: 4
    edited 30. Nov -1, 00:00
    thanks for your feedback its very hard for us and especially georgia who is suffering the most it just feels like we are getting nower soon hopefully we will get the answers when we get the ultra sound results. the doctors have said mechanicle pain is worse than artheritis as theres no medicine as such just excerscise which she isnt able to do when in pain thanks again
  • stickywicket
    stickywicket Member Posts: 27,416
    edited 30. Nov -1, 00:00
    I do feel for you. It is horrible having to see our children suffer: much better to go through things ourselves.

    I was diagnosed, years ago, at 15. I don't really understand the difference bet ween arthritis pain and 'mechanical pain' but I would, almost always, trust the advice of physios. Exercising our joints when they are flaring does hurt but it hurts instantly. This can make us less inclined to exercise. Not exercising them, however, can just store up problems for later.

    I don't know why they haven't done ultrasounds before but perhaps they weren't deemed useful. Scans, x-rays etc don't always give answers. Let's hope that these will.

    What is encouraging is that, between flares, Georgia seems to be leading a fairly normal, happy life. Good for her! And you :D
  • gemster105
    gemster105 Member Posts: 4
    edited 30. Nov -1, 00:00
    thanks for your comments sticky much appreciated we have been to our local GP tday who has said there's clear swelling and has booked her in for blood tests its awful to see thanks for your time x