Sad to say
illihor
Member Posts: 283
The Steroids are no longer working I think the only truly day Kayleigh was pain free was on Saturday. She had the steroids on tuesday, wednesday and thursday (15-17). By Sunday she was saying her knees hurt her again Come monday her hands were sore and monday evening she wanted help up the stairs. Come Tuesday and since then she's refused to go up on her own again. She can still come down sometimes (first and last things a no go).
She did however, enjoy christmas and think it def helped having 3 other children who were way overexcited to carry her on through the day but by 5 she was shattered and in so much pain bless her but she's a trouper and pushed on such determination and very stubborn.
We start methatrexate on 8th the community nurse is coming out then on 13th she's having her MRI of hips and jaw under GA. On wednesday she's got hydrotherapy and i'm looking forward to that as they've said I can go in too hehe The phsyio is gonna try and organise our next appointment so that someone can come and measure her up for shoes as i can't find any to fit her due to the nodules and her ankles have dropped and physio also noted she's flat footed (I never even noticed that one). so hopefully soon she can go outside without having slippers on lol.
Still I wish everyone a happy new year and hope you have all had a great christmas
She did however, enjoy christmas and think it def helped having 3 other children who were way overexcited to carry her on through the day but by 5 she was shattered and in so much pain bless her but she's a trouper and pushed on such determination and very stubborn.
We start methatrexate on 8th the community nurse is coming out then on 13th she's having her MRI of hips and jaw under GA. On wednesday she's got hydrotherapy and i'm looking forward to that as they've said I can go in too hehe The phsyio is gonna try and organise our next appointment so that someone can come and measure her up for shoes as i can't find any to fit her due to the nodules and her ankles have dropped and physio also noted she's flat footed (I never even noticed that one). so hopefully soon she can go outside without having slippers on lol.
Still I wish everyone a happy new year and hope you have all had a great christmas
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Comments
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am really sorry to hear kayleigh is hving a hard time!!!! maybe having the steriods now and again will help, before special occasions or something??
I hope the physio works and that she feels better soon x x x0 -
o no so sorry, let keep our fingers crossed for mtx injections helping, and keep pushing hospital for ideas... maybe hot water bottle?
love to you all xxx0 -
Oh Im so sorry to hear it didnt last long. Its so unfair..hope the injections kick in and start working and she gets so relief from it soon.
Lets hope its a happier new year for you all.
(((hugs)))
Take Care
Sam
xx0
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