children or adult services?

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mandyb
mandyb Member Posts: 15
edited 23. Nov 2011, 05:31 in My child has arthritis
My daughter is is nearly 17 has had JIA since she was 2 but was not diagnosed until she was about 7. She is back on treatment again since last nov but is struggling with lots of things at the moment. My dilemma is do we stay with childrens services which are not good where we live (though she is shared care with LGI) or do we insist on moving up to adult services. Any thoughts please? M

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  • stickywicket
    stickywicket Member Posts: 27,725
    edited 30. Nov -1, 00:00
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    Hi Mandyb and welcome to the forum. I don't have a child with arthritis but have had it myself since the age of 15.

    I hope some parent will be along soon to help you. All I can say personally is that, if by LGI you mean Leeds General Infirmary, in my opinion Leeds have an excellent adult rheumatology department - though these days it is at Chapel Allerton not LGI.

    I'm sure a parent will be here soon. As you will know, they do tend to lead busier lives than some of us older ones. I hope you can get some answers and help.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Ankyspond
    Ankyspond Member Posts: 626
    edited 30. Nov -1, 00:00
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    Hi,

    I have AS not my child but just to let you know my opinion as a mum I woukd insist she was transferred to adult section if you know the child section is not very good, you don't have anything to lose.

    Hope you get sorted. Xx
    AS Sufferer
    Live, love and enjoy life, live each day as though it's your last!
  • mandyb
    mandyb Member Posts: 15
    edited 30. Nov -1, 00:00
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    Thanks. Am going to have a proper chat with my daughter about it and then her consultants. We have an appointment in Leeds with him and also Mr MacDonald who we saw several years ago and he was the first one to mention hip replacement. Does anyone know any young people who have had a replacement? i know they prefer them to wait as long as they can. M
  • stickywicket
    stickywicket Member Posts: 27,725
    edited 30. Nov -1, 00:00
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    I don't know Mr MacDonald, Mandy, but I've heard good things about him.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • jeff1960
    jeff1960 Member Posts: 1
    edited 30. Nov -1, 00:00
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    Be careful who you get to do the surgery. A friend of mine
    went in to have the same procedure and she didn't come out.
  • worriedmum
    worriedmum Member Posts: 72
    edited 30. Nov -1, 00:00
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    Hi Mandy,
    with reference to the somewhat insensitive comment above, as a mum you are sure to give any surgery immense thought and consideration and would gather all the necessary information before any decisions made. It's a job you do as a mum and we all kno w the risks with any procedure and don't make these decisions half heartedly! My daughter is only 5 and so I can't say how i'll feel about her moving to adult carewhen the time comes but again, you'll just make a decision with your daughter based on the infomration you have at hand. And trust your instincts, you've been making decisions for her this long, you'll do allright while she takes onership of her disease.
    Out of interest, what type of arthritis is it she has? I live in hope of Freya'growing out'of her JIA but is this something I should be prepared for in the long term?
    I hope she is having a good day and you take some support from the useful replies here.
    Sam. x
  • mandyb
    mandyb Member Posts: 15
    edited 30. Nov -1, 00:00
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    Thanks for the replies (most of them anyway). My daughter has now moved up to adult services and has one last childrens appointment at christmas and then she will be discharged from children's services. She is 17 next week and they said it would be sensible for her to change.
    She has Juvenile Idiopathic Arthritis and was on metho and etanercept from about the age of 9 until 14. They then took her off it and we hoped that would be it but unfortunatley she started back on it in Nov 2010 after having problems with her fingers. She is currently just on metho which she takes in tablet form. We know that a double hip replacement will be needed at some point but its just when, and of course lots of thought and anguish will go into making that decision which ultimately will be her decision as she will be an adult.
    Worriedmum I would just say to always keep hoping and to never be put off by the doctors, always do the best for your child and push if you have to.
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
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    Jeff I'm so sorry. It must be awful for you to have lost a friend due to a routine op going so wrong. I know you were only trying to warn other people and that you are still hurting.

    I hope this will not put you off if you ever require similar surgery. For many of us any joint replacement can make a massive difference and greatly improve the quality of life.

    Many years ago I had a rhinoplasty. Recently the same surgeon was in the paper having lost a patient during surgery. These things sadly happen for many reasons but thankfully they are rare.

    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