One step forward 3 steps back.(JIA)

littlemummy2
littlemummy2 Member Posts: 91
edited 19. Oct 2010, 15:43 in My child has arthritis
My daughter phoebe has been complaing of her hips hurting her teacher came out to tell me about it last week have just had a phone call from her specialist they have rebooked her thumb joint injection and he also wants to try to book her in same morning for an ultrasound on her hips. Just feel so defeated at the minute. she was getting better but now this.

Sorry for the moan. Michelle A. :oops:

Comments

  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    hi michelle,

    so sorry your little girl is suffering, it is an awful disease and just when things look up something comes along and jostles it up again.

    i hope the US goes ok and her hips get better and the injections work.

    sorry i cannot offer anything else, thinking of you both

    clare :o
  • littlemummy2
    littlemummy2 Member Posts: 91
    edited 30. Nov -1, 00:00
    clare, thank you for your kind words. Hopefully there is nothing wrong with her hips but luck isn't on my side at the moment. Should find out hopefully on 21st one way or another.

    Michelle
  • lare73
    lare73 Member Posts: 154
    edited 30. Nov -1, 00:00
    good luck and keep us updated plz xx
  • littlemummy2
    littlemummy2 Member Posts: 91
    edited 30. Nov -1, 00:00
    Friday phoebe was off school with a 24 hr tummy bug being sick and bad stomach ache. Noticed saturday that the first joint on her right thumb looks a bit big asked her if it hurt and she said yes, always happens when she's poorly ends up with one of her joint playing up.

    Michelle
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Poor Phoebe, I hope she is feeling better now. I think joints do worsen when one is playing host to a bug: the bug fires up the immune system (or what is left of it depending upon meds) and so the arthritis can worsen. I hope she is OK today. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Oh no hugs I hope she's feeling better soon hugs. Kayleigh is the same if she's under the weather she flares up and coincidently her hips are hurting her again at the moment :(

    Michelle
  • littlemummy2
    littlemummy2 Member Posts: 91
    edited 30. Nov -1, 00:00
    I have recieved phoebe's appointmet for 21st she has to be at ward 54 for 11am, then at ultrasound departmet for 11.20am. Got a bit worried so phoned u/s dept. and they said it was fine they had spoken to ward 54 and she is to go for 11 and then they will send her for u/s. Will be a long tiring day, not looking forward to it.

    Michelle
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    Good luck with it all. I remember when 3 different departments had to try and agree to arrange times etc on a visit once was managed but boy did it make it along and stressful.

    Will be thinking of you on 21st, we've also got a hossie visit that day so I'll wish you luck now

    Michelle xxx
  • anniesmum
    anniesmum Member Posts: 102
    edited 30. Nov -1, 00:00
    Hi Michelle - poor you and Phoebe - I will be thinking of you and can imagine you in Ward 54, having been there with Annie. I think you will have been to it before but just in case I advise you to take stuff in for Phoebe to do as its a long wait and there's very little there. It will be a long day for you to and I will keep my fingers crossed the ultra sound doesnt show anything up.
    Take care
    Lucy
  • littlemummy2
    littlemummy2 Member Posts: 91
    edited 30. Nov -1, 00:00
    anniesmum wrote:
    Hi Michelle - poor you and Phoebe - I will be thinking of you and can imagine you in Ward 54, having been there with Annie. I think you will have been to it before but just in case I advise you to take stuff in for Phoebe to do as its a long wait and there's very little there. It will be a long day for you to and I will keep my fingers crossed the ultra sound doesnt show anything up.
    Take care
    Lucy
    Thank you both and Michelle i will be thinking of you too hope your hospital appointment goes well.
    You would have thought that they would have mnore things on the ward for kids, it's alright having the tv but phoebe won't sit still for long. Was reading the info about polyarthiritis that arthiritis care have put on. Very informative, this is the only place i know where you can get info about JIA.
    Michelle
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    littlemummy2 wrote:
    Thank you both and Michelle i will be thinking of you too hope your hospital appointment goes well.
    You would have thought that they would have mnore things on the ward for kids, it's alright having the tv but phoebe won't sit still for long. Was reading the info about polyarthiritis that arthiritis care have put on. Very informative, this is the only place i know where you can get info about JIA.
    Michelle

    I was going to say I'm shocked your hossie doesn't have more for kids but then that's the same as our local hospital. however, Bristol childrens Hospital is fantastic. They have a play room on most wards some with outside space, and a special play room (well it's huge) with outdoor garden. When we went it and stayed it was sunny and warm and she loves going outside. I try to take things she hasn't played with or seen in a long time to appointments. She's getting very good at playing games on my iPhone lol

    i didn't realise they had produced these sheets yet and have just looked at the polyarticular one. I remember when they posted about it asking for help to read it through, then I got a phone call asking if I would mind having a real life story printed on there so that story is us :D Nice to see they have used it, they asked loads of questions and produced a nice piece about her. But it makes me very sad reading this as well.

    Michelle xxx
  • littlemummy2
    littlemummy2 Member Posts: 91
    edited 30. Nov -1, 00:00
    It was a great read had parents evening for both girls but had a form to fill in had a question aboout if you had a child with disability/educational needs if you thought they they gave you enough info about what help i could get if it was satisfactory/ unsatisfactory so i ticked extremley unsatasfactory because the school has no idea what to do with her, her new teacher on the other hand is brilliant, she listens to you and she keeps and eye on phoebe.

    She was very slow this morning has been these last couple of days but it is turning very cold now so it is affecting her, she was complaing of her left hip hurting again.

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