Dreading Tuesday

illihor
illihor Member Posts: 283
edited 29. Jan 2010, 04:19 in My Child Has Arthritis
We are seeing Kayleigh's consultant in the afternoon to discuss how the steroids have worked this time around and if not as expected then she'll be put on oral steroids till methatrexate kicks in. Hopefully she'll have results from MRI as well as she tried this week but nothing on system.

My worry is that yesterday Kayleigh started pointing to very specific joints and telling me inside was hurting her (give her her due she's getting excellent at telling me where and how it's hurting which is brilliant for a 4 year old) especially her left hand and her knees. Today her left wrist was sore and at about 4.30 she was crying in pain and had a lie down paracetamol and a hot water bottle about an hour later she finally stopped crying and played again it was her pelvis/hips at the front.

So pain is def returning and apart from the hour of pain today she's been happy in herself and appetite in full swing from steroids. I just feel so sorry for her that this isn't working as well as expected.

I hate seeing her in this much pain and nothing seems to be helping much. One thing I've just been told by a friend is that if I speak with my hv I can get nappies for free (she wears at night as she can't get out of bed in time to go) as she now gets dla so will have to enquire about that on monday.

Michelle

Comments

  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    hi hun, bless your little one!!!!! I know how you feel about seeing them in pain, lucy is very good at pointing out how she is ill and why she is in pain. The problem we have is that she does not cry, she gets angry, she gets stroppy and she becomes a, as i like to say, "cow bag"! The problem is having to draw the line and punnish her for "bad" behaviour and recognising the behviour which is caused by her pain!!!! She tild me the other day when being mad to do chores with me, by our selves, because of an outburst, that when is is sore or pooly, as she calls it, things just come out of her mouth and she can not help it! She understands that having 5 mins to calm down to herself would be good for her, but she finds it hard to carry this out!!
    I hope your little one is better soon and the drugs kick in!!! Lucy is to start hers this fri, as the perscription did not come in for friday, so she has to wait yet another week grrrrrrr!!!!! Lets hope it works quickly and she starts getting some relief!!!!!
    good luck with tuesday hun x x x x
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    well all seen and we have to go back on Monday. God I feel like I live there at the moment :(

    She is thinking of starting oral steroids on monday depending how rest of this week goes.

    She has seen the mri result and she has a lot of swelling on her hips which is what is causing the pain she keeps crying about :( nothing was said about how to deal with that though think they just want to get pain level under control and go from there.

    Kayleigh refuses to let anyone up the hossie look at her joints though :( and today cried but not in agony just screamed about being touched so they gave up gonna try harder next time.

    She had hydro today and although was only in 20 minutes (all they will give her at the mo as she overdoes things without realising) she's hurting a LOT tonight. School even called me up today to say she was crying in pain for her legs so I know it's all starting to come back.

    It was good going up there today though as both nurses and dr have seen her semi good and know what a different child she is when feeling ok in herself, which is good as it's always been me saying i know she's ill etc but now they can record how she is.

    Another thing in speaking with the nurses about how the head has been over Kayleigh's shoes she's getting they said if she starts giving us a hard time over it give them a call and they will get a letter typed up for us to hand in saying how it's needed etc and any other problems or letters we need to let them know and they will do anything and everything to help. :) this is fantastic news to have the hospitals backing like this.
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    I think you get free nappies even if not on DLA.That certainly was the case a few years back but things are changing(for the worse) nowadays.They usually give you about 3 per day and you get a whole big box load delivered in one go so have to store them.
    Your daughters meds will hopefully kick in soon.Sorry to read she is in so much pain.It is heartbreaking reading this young persons forum.
    Elizabeth
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein