daughter with ipa

Options
annroseabby
annroseabby Member Posts: 2
edited 9. Jul 2014, 06:41 in My child has arthritis
hello all
am looking for advice,information on the 30th of june my seven year old daughter was diagnosed with idiopathic polyarticular arthritis as well as
bilateral uveitis in both eyes, as a parent am still at the what,how,who,what how stage and looking for advice or information from other parent who have or going throught this just to see what am up against


many thanks
kirsty xx

Comments

  • sararichards
    sararichards Member Posts: 2
    edited 30. Nov -1, 00:00
    Options
    Hi Kirsty

    Sorry to hear your daughter has been diagnosed with arthritis.

    My daughter, who is 6 now, was diagnosed with Juvenile Idiopathic Arthritis in May 2013, it was initially described as oligo but is now polyarticular. She had a very serious attack of Uveitis in November of last year, which has left her right eye badly damaged and she has recently had surgery.

    It took about 6 weeks to get a diagnosis and I remember it was a total whirlwind and we weren't dealing with uveitis at the same time either so you have my sympathy.

    There are some good facebook pages for parents of children with JIA and also with Uveitis called: "kids with uveitis" and "growing up and living with uveitis" are both super, plus "juvenile arthritis parents and families uk".

    A good website for information about Uveitis is Olivia's vision and another one is http://www.oliviasvision.org/ and also this one: http://www.uveitis.org/

    You've got a really steep learning curve ahead of you but there is a lot of support out there. Don't feel alone - there are parents out there who are going through exactly what you are going through now.

    the good news is that once you have got your daughter onto the right medication, the arthritis can be controlled and hopefully the uveitis has been caught early and won't be problematic.

    All the best to you and your family.
  • stickywicket
    stickywicket Member Posts: 27,720
    edited 30. Nov -1, 00:00
    Options
    Hello Kirsty. I'm sorry to hear of your little girl's diagnosis and I hope it will soon be under control with the medication. You might find this fact sheet helpful. (Scroll right down. Third from bottom.)
    http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Factsheets

    I've had arthritis myself since 15 but, thankfully, neither of my sons has it. Parents are busy people, as you'll know. I hope some of them see this and reply but, if not, you might find it helpful to read first posts on threads on here as they will give some indication of that child's form of arthritis and what happened next. However, do bear in mind that parents tend to post either at first when things are bad and they're a bit panicky or later if things aren't going well. The many for whom the medication works well don't need to post so the forum is a bit weighted on the negative side.

    What medication has your little girl been given and what follow-up will there be? I apologise in advance for not being around much in the coming week. My son and family arrive later today.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright