Had review yesterday omg

illihor
illihor Member Posts: 283
edited 21. Apr 2010, 16:35 in My Child Has Arthritis
Kayleigh had a review yesterday with Plymouth consultant and Bristol consultant including part of her (bristols) team, the physio and not sure who else can't remember there was 6 in all.

Anyway they have said they are happy that the methatrexate is working fo rhte most part but are very concerned about her. She is to have yet another MRI under GA as that one a few months ago wasn't done right something about a dye being injected into blood or something. They are also worried about her neck as she refuses to look up fully. The MRI can be done down here thankfully.

Then once MRi is done she is to start on oral steroids then up to Bristol hossie for a day for another GA and steroid injections into her joints deffinately her wrists and they will decide what else after MRI and how she is at the time.

Then once that's done they want her back up in Bristol (this is only a possibly right now depends how things go) to teach her how to play and move again as the consultant said she has lost a key part in her development and is worried she won't get back to doing everything she should be or overdoing it, as she is very withdrawn at nursery if it gets busy/noisy here (have 3 other children) she'll just sit and and hide and take herself out of the way afraid of getting hurt etc so they want to have her up in Bristol for 3 days to try and help her.

They asked me if any time was good I mentioned about a holiday in the summer and they said no everything will be done well before then :o gulp and eeek they said would it be easier while the others are at school and I said yes as the boys even though would notice i'm not there would be at school and not under hubby's feet.

Bristol also didn't seem very happy that she was only having hydro every other week and we haven't had physio in over a month that didn't go down well at all the latter bit. So looks like physio is back on the cards again as we're booked in every friday.

Just thought I would let you all know how things are going with her, hope all you and yours are doing good and this sunny period helps with the aches and pain they suffer.

Michelle xxx

Comments

  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    oh bless her hun x x x x
    i can ot understand her not getting physio, lucy has to go every week and wee been traveling 20 miles a week till this week!!! Lusy is very withdrawn too and will tend to keep herself seperate from the other kids, the school noted that she was not going out to play as myc as they would have liked, so i gave them permission to make her at least go and walk round the yard, if not play, once a day.
    At the mo theynot got her controlled and have upped her steriods, i have noticed that they do help but the sied effects, like hair groeth, is upsetting her a little. Lucy now had hair all over, like a baby does, but a boy at school said she needed a shave cause she had a tash!!!! little bugger!!!
    I know it is daunting having a ga but at least the hospital are pushing forward with stuff and doing all they can to help her!!! x x
    i hope she feels some benifit soon x x x x x x
    we all send out love.

    hope all ur kids are holding up well and are going to enjoy school again!!!
  • speedalong
    speedalong Member Posts: 3,347
    edited 30. Nov -1, 00:00
    Hi Michelle, it sounds like you and Kayleigh have a busy schedule ahead - what a lot of travelling too!! Why are you seen by such a geographically diverse team?

    It sounds like they are working to get the best results for Kayleigh however and are looking at her physical, social and developmental needs which is just great.

    Let us know how things develop.

    Speedalong
    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.
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    speedalong wrote:
    Hi Michelle, it sounds like you and Kayleigh have a busy schedule ahead - what a lot of travelling too!! Why are you seen by such a geographically diverse team?

    It sounds like they are working to get the best results for Kayleigh however and are looking at her physical, social and developmental needs which is just great.

    Let us know how things develop.

    Speedalong

    Thank you. I think we're being seen by different hospitals as the type that Kayleigh has hasn't been seen down here and she had nodules on all her knuckles on her big and baby toe and on her elbows which is very rare in a child apparently especially when she was diagnosed she was only 9 months into this and they said it was very very fast for something like that to happen. Bristol got called up with a few questions about her case and they immediately wanted to see her. I don't mind as both hospitals are now trying to help but i think she is mainly under Bristols care tbh (as the dr's down here call up bristol everytime they want to do something and it's been bristol putting in all the requests for meds and other stuff) but they are letting all treatments (well as much as possible) be done down here to save us travelling 2 hours just for physio/hydro and MRI's/x-rays but for actual steroid injections direct into affected joints is a bit more of a precise thing and Bristol consultant wants to do it up there.

    Hydro was cancelled this week :( so it's just physio tomorrow and see what plans she has for us.
  • speedalong
    speedalong Member Posts: 3,347
    edited 30. Nov -1, 00:00
    Hi, it is good that she has the best looking after her and that her local hospital are seeking advice and working with others. Good communication between professionals doesn't always happen....

    What a shame about hydro - let's hope it goes ahead from next week on.

    Let us know how things go.

    Speedalong
    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.