should i hire a wheelchair for my daughter

sarkat
sarkat Member Posts: 5
edited 12. Dec 2013, 14:16 in Say Hello Archive
Hello at long last i've decided to join this forum after coming to accept that my lovely 15 year old daughter isn't just gonna get better its taken us over 3 years to get her diagnosed her hips and back used to be the main problem areas for her but recently her knees are causing her to miss school as she is unable to go from one end of the school to the other and i'm afraid to hire a wheelchair for her as one of the doctors we seen at the rheumatology clinic got very cross when i hired her a wheelchair to get back to school in september as this is 5th year and her gcse year it was the only way she could get around school the doctor said her muscles would waste if she uses the chair she only used it around the school but now due to another flare up she has missed another week i feel we're caught she enjoys school and wants to do well in her exams would it be wise for me to go ahead and hire her a chair again she is due to start the anti TNF treatment as soon as a toe infection clears up thanks for any words of wisdom you may have for me

Comments

  • stickywicket
    stickywicket Member Posts: 26,279
    edited 30. Nov -1, 00:00
    Hello sarkat and welcome. I'm glad you've decided to join us.

    This is a really difficult question. The doc is quite right about muscles wasting if not used (The old 'use it or lose it' adage) but this is quite an unusual situation. I was diagnosed at 15 (hands and ankles) and remember limping/hopping to school with the help of my friends. I was flaring badly during my O-levels and was told to stay in bed except when I had an exam, and not to do two exams in a day.

    Firstly, I hope the school is aware of all aspects your daughter's problems so that they can make provisions for her. Secondly, was it your GP or rheumatologist who demurred about use of the chair? GP's aren't very clued up abour auto-immune forms of arthritis: that's a job for specialists. So, although the doc is right, I would personally be inclined to ask the rheumatology helpline for advice here, especially if she's about to start anti-tnfs.

    I don't envy you your decision. It might be worth copying this thread onto the 'My Child...' forum. Other parents might have useful input though we're a bit quiet all over right now in the run-up to Christmas.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • sarkat
    sarkat Member Posts: 5
    edited 30. Nov -1, 00:00
    i've reposted as you suggested thanks for your reply
  • frogmorton
    frogmorton Member Posts: 26,765
    edited 30. Nov -1, 00:00
    Sarkat

    My youngest is doing her GCSEs this year too, (it's me with arthritis though not her - she has epilepsy and we are doing a meds change mid-GCSEs too ::) ), and I can see what you mean very much so. This is an important year and as Stickywicket says we can see what they mean about muscle wastage, but EXAMs are important too :?

    I forgot to welcome you to our forums :rudolph: and if you don't get much response on the 'My child' forum don't be put off posting in the 'adult' section Living with arthritis for instance. A lot of issues are transferable between ages. Exams maybe not so, but anti TNF definitely :)

    Take care and it's not easy being a Mum is it ::)

    love

    Toni xxx
    Love

    Toni xxx