My daughters jia getting worse

Lilygrace
Lilygrace Member Posts: 4
edited 10. Mar 2014, 17:44 in My child has arthritis
My 12 year old daughter jia is getting worse she's had two lots of joint injections and within 2 weeks had a flare up, seen the docs the other day they seem to think she may end up on weekly injections, it's totally ruling her life at the moment I get called from school nearly every day to say she can't cope with the pain.. She is also suffering from abdo pain really badly to the point she can't move off the settee, here wrists ate now affected and can hardly pick up things we are just at the end of are tether it's awful to see a young fit girl go through this on a daily basis

Comments

  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    I'm so asorry to hear things are so difficult for your little girl at the moment. Watching our little peole in pain is just horrible and it's the feeling of utter helplessness which makes it so much harder. Apart from sympathy, i'm not sure i can offer much in the way of practical help but perhaps a few suggestions from my own experience of heloing my daughter deal with the pain she is in might be worth a read. You may already be doing most of these but it's always worth hearing what works for other people and giving some a try.

    Assuming she is on adequate pain relief, give some careful thought to when the pain meds are given. Sounds obvious, but if there are predictable times of the day when things are generally worse, give her pain relief ahead of time so that it will at least damp down the anticipated pain. This is helpful as much for the psychological impact as for actual physical pain as anticipating pain can be wearing.

    Are the school able to keep some pain meds in a locked cupboard and administer it when needed or on a regular timed regimen? After discussion with my duaghhter's teacher, she is happy to give her a dose whenever she needs it, she just rings me first to ensure I havn't already dosed her up so although it needs to be carefully monitored (also so that you know how much pain she is in onot just to prevent verdose) it is really helpful if you can engage the help of the teacher who will also get really good at recognising the signs of pain.

    Physio can be really hard, especially when pain is bad and I know Freya is unwlling to do her ex's sometimes because she knowsher pain will get worse afterwards. However, if we do them in the bath/pool/warm water of any kind really, she is much more inclined, especially if she can make it more fun.

    Relaxation techniques such as 'deepbreathing whilst pretending tto be a sleepy starfish'
  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    sorry, got lost somewhere - here's the rest of my rambles...
    also another one we do together is if one of you is thinking of a happy memory, for example something you all did last summer, the other has to ask questions about what you can hear, feel, see etc and guess what the memory is about.
    Making up stories where one of you says the first word, then the other says the next word and so on, can make for some hillarious tales being invented and certainly brings the tension down when trying to get to sleep etc. All of these are adaptable to be age dependent but are worth a shot.

    Anyway, enough of what i get upto in the evenings...
    I hope you and your duaghter get adequate supprt from her clinical team and they can get on top of the flares really quickly.
    Keep in touch and let me know how things are doing.
    If you want to know more about my backgrouond with JIA (or shoudl i say Freya's) please read some of my previous posts. Ask me anything you want.
    I'd be glad to help if I can.

    Sam. x
  • Lilygrace
    Lilygrace Member Posts: 4
    edited 30. Nov -1, 00:00
    Thanks so much to your reply I will certainly try some of your ideas, how long has your daughter had it?? Are they on top of her pain?? Emily is getting injections on Friday with gas and air only, it's her wrists which are giving her the most grief she can hardly pick things up,is your daughter on the injection form yet?? Am just at a stand still doctors keep saying right were going onto injections then nothing happens
    Vicky x
  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    Hi Vicky,
    Yes, Freya is on Methotrexate, has been since she was 4 (as tablets first and then later sub/cut) and also on Humira injections as she also has Uveitis too!
    She copes really well with the injections, I give them to her at home so we have got into a reallly good routine with them. She has Osteonecrosis in the left ankle (diagnosed on MRI last summer) which is thought to be the result of 6 years of inflammation and repeated ( i mean practically yearly) steroid injections which have taken away the inflammation for a while each time but now have left this new problem behind. She has just been issued with a splint which is heloing to lock off the anke joints and alleiviate the pain to some degree - she has only had it a few days but early signs re promising so I am quitely and cautiously optimisitc. Otherwise, she uses Napraxon/paracetamol/hydrotherapy and all the other techniques we discussed earlier.
    Uveitis is under control at the moment but it is a constant worry, as is the Humira to be honest. JIA doesn't come alone...

    Hope all goes well on Friday. I will be thinking of Brave Emily, and her brave mum too.

    Sam. x
  • Lilygrace
    Lilygrace Member Posts: 4
    edited 30. Nov -1, 00:00
    Hi Sam,
    God you's both seem like you've had it ruff am trying to be brave but it's so had when you don't know much about jia, I've just had a baby too 16 weeks ago and Emily even fines it hard to pick her up. The nurse rang me bck b4 and had a good talk to me there so nice with us, there going to show Emily on fri how to inject her self so let's hope that makes a difference
    Thanks for listen
    Vicky xx