We seem to be in a good place

illihor Member Posts: 283
edited 6. Sep 2010, 04:25 in My child has arthritis
at the moment. Kayleigh has responded well to the steroid injections although I'm starting to see a decline in some areas especially her jaw. She starts Enbrel on 24th her community paed nurse and myself have decided to wait till after we get back from Bristol Hospital and her intense physio session as otherwise she'll only have 2 jabs here then I have to take it with me for them to administer as well as mtx and knowing how kayleigh is with injections we both thought it best to wait, plus at least it's only one injection I'm having to bring on the two hour train journey instead of 2 one of which I would have to keep chilled and a sharps box phew.

She's enjoying life again but has some very big differences in good and bad days. Does anyone else find this with their child. One day she could be full of beans happy willing to try then the next not want to walk/do anything. Today she was in and out of the wheelchair like jack-in-a-box was like she didn't know what to do, must admit she spent mmost of it in the chair. We've been told to try and encourage her to walk more and to "forget it" on certain days. how on earth do I judge a day to do that knowing it will be ME that will have to carry her when she's hurting/tired easy for dr's to say that but in practice very hard, especially with 3 other children one being 22 months old. Must admit worked in our favour on holiday this year her being in a chair as got cheaper entrance tickets on days out lol never knew that a carer gets in free with a disabled child :D

Michelle xxx


  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Hi Michelle,
    great that jabs have helped, though that is a shame about her jaw. Sounds like you have a good plan re starting the new meds after her intensive physio. Good that the medics listen to you as you knw Kayleigh best.

    I would say the good and bad days thing sounds normal to me - us grown ups feel great - overdo it and then pay and have to rest the next day. I'm sure it is even easier for children to over do it and not pace themselves. Perhaps scheduling a few "rests" ie watching a DVD, listening to a story on good days at regular intervals will help her to rest.

    Does she like pushing the wheelchair or is that too hard for her? That might encourage her to spend less time in it. It is easy for the medics to say leave the wheelchair behind etc ... I would say leave it behind on shorter trips out. Does she have a better time of the day ? Maybe that would help guide when to take it/leave it? Or a system of walk there and ride back? I'm sure you'll work something out - you seem to be very resourceful.


    PS I never knew a carer got in free with a disabled child either!! Have only started taking advantage of this with S since he has been grown up...
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.