JIA related Uveitis in a 4 year old

worriedmum
worriedmum Member Posts: 79
edited 20. Oct 2011, 15:19 in My Child Has Arthritis
Hi everybody,
I'd really like to know if anybody has a child with arthritis who has also had Uveitis?
My 4 yeaar old daughter went for her routine eye screening yesterday and we were told she has it in both her eyes and has been started on hourly steroid eye drops. We've to go back next week for review and revise meds accordingly.
Currently terrified of the consequences and the long treatment it's going to take to shift it, I would love to hear from anyone who has already been there.
My daughter was diagnosed with JIA at the age of two and is cared for brilliantly by a great paediatric rheumatology team. We also now have a Uveitis nurse! Last joint injection was almost two weeks ago, so she seems fine at the mo, but the hidden dangers behind the eyes have just come to light.
I'd be really grateful if anybody can offer any advice or the benefit of their experience.
Thanks.
Sam.

Comments

  • valval
    valval Member Posts: 15,897
    edited 30. Nov -1, 00:00
    hi sam sorry can not help you sure some one will come and help you soon sorry your little girl is going through all this i know how hard it must be for you we are here if you need us val
    val
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I am so sorry to hear this but I am afraid I cannot help. You might be better posting on the young person's forum, as that is where parents tend to gather regarding help and advice for their children. I wish you both well. Dreamdaisy
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • marion1952
    marion1952 Member Posts: 996
    edited 30. Nov -1, 00:00
    Dear Sam

    So sorry to hear about this further worry for you and your little girl. As Dreamdaisy says, you will probably find people in similar situations on the 'young people's forum' ..

    I'm so pleased that you have a good Paediatric Rheumatology Team looking after your daughter - that makes such a difference I think. She sounds a very brave girl indeed.

    All the best.

    Marion
  • steph120786
    steph120786 Member Posts: 66
    edited 30. Nov -1, 00:00
    Not been on here fo a while been jam packed full of hospital appiontments, but was just coming on have a moan about this myself.. my daughter is 3 and has has jia since 18 month and uvitis since last november.. with drops since then, an increased dose of mtx inj as both flare in legs and eyes coming to light, now today we still have an active right eye so are adding additional meds in to try and gain control, its called mmf never heard of ot and its never been mentioned before.

    All a lot to take in I know its like a rollercoaster, but your daughter is in the best hands and it is possible to gain control with just eye drops, fingers crossed for your little one.... is she on any systemic meds?

    much love to you both xx
  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    Thanks for your reply. No she's not currently on anything systemic but have just been told she will need to be soon, so they are moving towards it. They keep mentioning Methotexate.
    Her eyes seem to be repsonding to the steroid drops - went back yesterday and have follow up in a month but have to keep taking the drops till then and they wil review her then.
    Sorry to hear your daughter is having on-going problems and even the therapy she is currently taking is not quite tackling it. It's such a worry isn't it, but really we just have to trust in the experts and read as much as we can and ask the right questions I guess.
    Stay in touch, I'm surewe can learn lots from eachother.
    Sam. x
  • lisa11
    lisa11 Bots Posts: 20
    edited 30. Nov -1, 00:00
    hi to all of you i just wanted to wish you all the best hopefully 1 day they will come up with something to stop our kids suffering as you say keep in touch with others it does help i learnt more from other parents than the doctors .were currently going through the joys of adolecence and jia its very trying all of a sudden ive got a 13yr old telling me hes not letting me give him his injection and we must be evil for doing this to him and its against his rights ,god they teach kids too much these days ,thats my rant take care all xx
  • steph120786
    steph120786 Member Posts: 66
    edited 30. Nov -1, 00:00
    good news the drops are reducing it, fingers crossed it gets rid completely, like you said we have to put all our trust in these people to try and help our babies, its just so hard to have to take the back seat and let them choose the path you take.. But we still have our HOPE and hopefully one day they will find something to put all our babies into remission.

    Lisa so sorry to hear about your son, it is heartbreaking having to do these things to them but it has to be done, i know give my daughters injection whilst she is asleep she doesnt even know it has been done, worth a try if he good sleeper.

    big hugs to you all xxxx
  • saraht
    saraht Member Posts: 17
    edited 30. Nov -1, 00:00
    hi my daughter has had uveitits on and off for 3 years now, went for check up and its back for the 7th time, more drops, lucy does not mind the eye drops so much because she told me other stuff she has done is worse than eye drops. we really wouldnt know she had if it hadnt been for it being spotted in her checkups, i do know it can cause long term damage if left untreated though. if you need any more help please get in touch. sarah
  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    Thank you Sarah,
    Sorry your little girl is still suffering with it. As I understand it, they can become prone to a chronic Uveitis once they have had it once and so our eye and rheumy team have decided thatit is best if Freya starts something Systetmic which should help her eyes and some residual joints which are still causing some problems. Is Lucy on anything? Freya started Methotrexate yesterday after a long dicsussion with the cons rheumy so we just have to wait and see how that turns out. I was very reluctant when they first mentioned MTX about a year ago but I now understand that it is all about protecting their joints and eyes for the future, so we realise now it is not realistic to avoid it and the time has come that we need to give it a try.
    We go back for the Uveitis clinic appt in about 3 weeks and are stil using Pred Forte drops 4 times a day now, until then - we'll see if they can see any sign of inflammation when we go back. The doc did say that when she stops taking the steroids it will probably come back so I think that is why they decided MTX will be more sucessful.

    Thanks again for getting in touch. Let me know how your little girl is doing? How old is she, when was she diagnsoed etc, what type of JIA does hse hvae?
    I look forward to hearing from you soon.
    Sam. xxx
  • steph120786
    steph120786 Member Posts: 66
    edited 30. Nov -1, 00:00
    Hi

    Glad to her things are moving forward for you and that freya is doing well with the drop's easier for both of you!! MTX is a good step as far as i am concerned Kaitlin couldn't walk for a while and this definatly helps and has a huge impact on her mobility.

    Where about in the country are you? what type is freya?

    i lovely to hear from someone who can relate to this rollcoaster

    xx
  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    Hi Steph,
    Thanks for your message. We are in the South West and Freya has Extended Oligo-articular JIA. Week one of MTX and all good so far though I know it takes a while for the effects, good and bad to kick in, so we'll wait and see.
    Hope all is well with you and yours - what's your story and where are you?
    Good to hear from you
    Sam. xx
  • steph120786
    steph120786 Member Posts: 66
    edited 30. Nov -1, 00:00
    Hi

    We are in south yorkshire right up north... Kaitlin also has extended oligo.

    Glad you have got started on mtx, although it takes a while to kick in you should see a big difference when it does, are you on inj or tablets?? i have tips for both lol.
    Kaitlin starts her bloods test next week, not looking forward to that every 2 weeks but these things we have to do. Back at hospital on 6th to see both rheumy and opthamologist so will be able to see what effect if any these new meds are doing so i will be sure to update

    you will have to private message your e-mail to me as i would love to know more about your story and i am sure we could help each with all the questions

    take care xx
  • littlemummy2
    littlemummy2 Member Posts: 91
    edited 30. Nov -1, 00:00
    Methotrexate is great for uveitis which is why phoebe was put on it if she gets in now she will be back on methotrexate.
    Michelle
  • njd
    njd Member Posts: 3
    edited 30. Nov -1, 00:00
    Hi Everyone, my 10 year old daughter has JIA associated chronic bilateral anterior uveitis. She lost the sight in her right eye due to late diagnosis and then failure by her then specialist to treat this disease aggressively and just use steroid drops. Needless to say I found another 'proper' uveitis specialist to save her left eye who started her on mtx and ciclosporin. This brought the flare and cells down from 4 (the worst) to 2, but then stopped working. She's now on 20mg of mtx and tacrolimus which isn't the miracle we were hoping for. If this doesn't work she'll be moved on to a biologic called Humira. This can potentially be such a destructive disease but it helps to know there are other Mums out there who know what my daughter and I are going through.
    Wishing you all quiet eyes
    Nicki
  • Niknak
    Niknak Member Posts: 44
    edited 30. Nov -1, 00:00
    Hey there Sam it's nik nak(chrissy) just read your post and I'm so sorry this has happend to Freya, Nicole dosent have problem with her eyes, but I just wanted to offer some support. I have a neurological condition and it is my sight that is the main cause of worry for me as without medication and lumber punctures I would not be able to see, I understand the worry and stress you must be feeling over freya's sight. I'm in Manchester and see a really good opthomology team, and I know all eye hospitals are excellent at managing and treating problems such as Freya's. I just wanted to say they will monitor her very care fully and their are things they can do to control it so please try not to worryx chrissy x
  • kim123
    kim123 Member Posts: 1
    edited 30. Nov -1, 00:00
    hi just just registered!! my daughter as uveitis in her right eye she developed atheritis at 10mnth, uveitis was aggressive and developed at 14mnth she is now 2 and half yrs, it was controlled by drops and steriod injections she then went on to have subcut methatrexate every wk,it controlled the inflamation as been brilliant for her joints,i requested to see the othamotlogist as i notice slight color change, we saw him last week she now as a cataract forming and poor vision so just waiting for nxt appointment to see wot happens nxt!! x
  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    What a worry!
    Sorry to hear your poor little one is stuggling.
    I have read that some of the drops useds can alter the colour of the colourful bit of the eyes. I have noticed Freya's once very blue eyes have gone a little bit more grey - but still beautiful! Not sure if thats the colour change you refer to or is it a cloudiness consistent with cateracts. Well done for spotting it and getting her checked. What are they planning to do?
    Let me know how things are going?
    Hope you are getting the support you need.
    Sam. x