arthritis and m.e.d

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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    That's somewhat gnomic, polomint, can you proffer any suggestions as to how to achieve that aim? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Pegsboard
    Pegsboard Member Posts: 29
    edited 30. Nov -1, 00:00
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    Well I thought that too DD. If we could just think 'ah I'm going to be brighter today' all our lives would be better. Suggestions please polomint.

    Kerry my daughter is 3 and she's had JIA for as long as we can remember although only diagnosed in February.
    Thank you for your wise words. Hope your girl has had a better day and enjoys her Easter break, and you too.
    Zoe X
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
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    Hello and sorry for not seeing this before. I have a 6 year old with polyarticular although they've just changed the diagnoses to Psoriatic :(

    My daughter has methotrexate and Etanercept and I'm with you about how you feel giving injections and in fact giving these sort of drugs in the first place. I've just started giving them without any support from nurses watching etc it's so scary but do-able and when the child agrees to it and in fact my daughter has been insisting on me doing it.

    I hope you get your answers soon either way. hugs

    Michelle
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
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    Hello CherryDrops, I hope you have all had a lovely Easter despite everything that is going on. Your girl sounds wise beyond her years (illness often has that effect on youngsters) and I hope you will be able to administer the meth to her. This cannot be easy, the blurring of the roles of mum and nurse but it is sadly essential and I know from my own experience that doing these things at home is far nicer than having to trek to a surgery etc. Meth can be a very effective treatment and I hope it proves to be the case for Lil, I really do. I wish you both well. DD

    PS I am pleased to see that polo's less than helpful comment has been removed - my thanks to the mod who deleted it.
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • CherryDrops
    CherryDrops Member Posts: 18
    edited 30. Nov -1, 00:00
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    Well,
    went back to SCH yesterday as planned, we go back in next week again for 3 days of steriod drip and more ultra sounds etc to determine injection sites and to look at starting the methotrexate. they have delayed things slightly for us as the Murquio tests came back positive and they want us to have some time to take things in. not a surprise I know but a devastating blow that I didnt want. now I want to go and lock myself in a cupboard and stay there. They will never know if the arthritis would have happened anyway or if it is part of the Murquio. She is so hampered at the mo bless her that she cannot even wipe herself when she goes to the loo - and that is not nice for a 10yr old girl. forgive me now for I need to disappear a while.x
    Cherry Drops.xx
  • Pegsboard
    Pegsboard Member Posts: 29
    edited 30. Nov -1, 00:00
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    So sorry cherry drops. Might thoughts are with you and your family. Take as long as you need. I'm here when you need me.

    Zoe
  • stickywicket
    stickywicket Member Posts: 27,712
    edited 30. Nov -1, 00:00
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    I'm so sorry, Cherrydrops. This is an extra blow that you and your little lass really didn't need. I don't know what to say other than offer a few hugs ((())) and say I hope the steroid drip and ultra sound goes smoothly. You both deserve something to go right for you.

    On a purely practical note, you can buy gadgets for dealing with the toilet problem in disability shops. I have one in the drawer for the bad times. Take care, both of you.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • applerose
    applerose Member Posts: 3,621
    edited 30. Nov -1, 00:00
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    Sorry you and your little girl are having such a rough time. I hope there is some improvement soon. (((hugs)))
    Christine
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