Update and advice please

lucysmum
lucysmum Member Posts: 24
edited 6. Jan 2011, 16:46 in My child has arthritis
Hi all I hope you all had a good christmas and new year x x x
Just before christmas Lucy had her review and while she is tons better than she was we are still having flares with her hands and jaw (primeraly).
Lucy's meds are now going to be changed, I am ver vervy for her, i just hope it helps!!

I am having problems too trying to get her to do her physio at home, as the school now apear to have stopped helping all together!! grrr I was wondering how everyone manages to get their kids to do it. Lucy is VERY strong willed and even a talking to by the physio seems to have had little affect! Whenever we get on to do exersises it ends up in ww3! I am no push over and can be quite strict but i have tried everything treats, bribery, explaing it is good for her, as she is 8 and does understand, but she still puts up such a fight it makes it so hard. Has anyone out there got any good tools they use to make them more fun?? We just got a wii fit, are they any good?? She really needs to help hersel as her joints are never going to get better if she does not.

Thanks for any advice x x x

Comments

  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    I'm having same problem with Kayleigh although she is 5. We have just won the batle of injections she doesn't even cry now so not quite ready to do battle on physio front. Like you school don't seem interested at all in helping in that department.

    We have a wii and I got her a wii fit junior thing got loads of games but after the first two she said no more i don't like it, when I asked her why she said it hurt her legs arghhhh just no hope

    I've tried making it fun and having the boys do it with her, making games up etc etc. she hasn't even used her physio ball in ages and i've noticed just lately we're back to using her wheelchair more and more but it seems to be more staminar than actually hurting her. She got a tail game for christmas where you put a belt around your middle and clip tails on there was four in the box (helpful with 4 children lol) they had a mad dash around having loads of fun and although the game lasted about an hour she certainly didn't last that long took a lng time getting things done sitting down etc. the next day she was in agony even got her cushion out for the car that she hasn't used in months.

    Weather has been s**t to say the least as well so can't even get her outside to run around, go on tampoline go park etc. we were at soft play yesterday and she spent all but 10 minutes in the baby section once she did pluck up the courage to go into the big section she got bullied on arghhhh hasn't helped at all.

    Sorry don't think I've offered any advice there but moaned as well oops. At least we can both moan together. hugs

    Michelle xxx
  • littlemummy2
    littlemummy2 Member Posts: 91
    edited 30. Nov -1, 00:00
    Hi lucys mum and michelle happy new year to you both. It can be quite stressful when it comes to doing physio. Have you thought about doing a reward chart for physio? With phoebe back on mtx medicine she hates the taste but i am doing a reward chart for her seems really interested in getting a sticker, she will be having her second lot today so i will let you know how i go on. Sparklebox have some charts and you can download certificates as well. The website is www.sparklebox.co.uk.

    Hope it helps MichelleA x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh it is a difficult one, I know. The fundamental problem as I see it is that moving hurts. It hurts all the damn time, every movement sets off a twinge or a pang of pain, and I think it quite reasonable not to want to move for that reason! I am 51 and can work thro it, but for your litttle ones (and slightly bigger ones) it must be so much harder. I think the Wii is a very good idea, but ration its use: just do five or so minutes to begin with, and try to build stamina that way. I love the tennis game on a Wii (we haven't got one, we used one on holiday once) and I could only stand up for about five minutes before everything was shrieking - your offspring are younger, hopefully fitter, but gauging anyone's pain is not that easy, so go gently at first. Physio exercises hurt too - again short bursts and often are better than one long session of about half-an-hour, or whatever 'they' say you should be doing. DD
  • lucysmum
    lucysmum Member Posts: 24
    edited 30. Nov -1, 00:00
    Thanks guys it does help to know I am not the only one in this situation. Michelle I know exactly how you feel about things seeming to go backwards!! Lucy's little sister has just started dancing and i want Lucy to take up an out of school activity, to get her involved, distracted and making new friends. She has decided Brownies may be right for her so now we have the battle of finding a group who will take on a "normal" looking little girl with extraordinary problems lol
    Lucy seems to be going through a bad flare at the moment, mostly around her hands weists and jaw, but as usual one joint hurts so the rest join in lol. A friend had her for a few hours and where Lucy would normally be happily playing with her daughter she sat on the couch and cuddled in, which she would never normaly do with this particular friend of mine!! My friend was so worried she rang me. I have started using Lucy's wrist splints again and sent a letter into school in the hope thay do not push her too far so that we can do physio at home etc. It is hard though after a full day of school for her then to have the energy to do physio!!
    Thanks guys, for letting me rant etc x x I love this site x x
  • littlemummy2
    littlemummy2 Member Posts: 91
    edited 30. Nov -1, 00:00
    I hope they listen, some school nod their head and it's "oh yes we'll keep an eye on her/him for you" Then get nothing back. I picked phoebe up from school today, asked how her feet had been, she said they had been hurting. She goes and see's Dr wood on tuesday so have asked if they could make a note of when she complains and what she complains about. Where upon I was told she had been complaining of her feet and her hips hurting. Can't wait for mtx to take effect, gave it to her today and she got another sticker, she's really pleased with herself for taking her medicine. If you can with your daughter do a bit of excersie while she is in a warm bath.

    I really feel for you, it isn't easy and the weather doesn't help matter. I told a friend that i give up because there seems to be nothing else to do for phoebe but sit and wait for the mtx to kick.

    Here's hoping things turn out well for you, hugs Michelle A x

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