still not there

lucymum
lucymum Member Posts: 113
edited 10. May 2010, 18:35 in My child has arthritis
well we went to the hospital earlier this week, Lucy's arther s still not under control!! We have been on the mtx for 11 weeks now and were hoping it would have worked!!! The hospital are not very happy and have upped lucy's steriods to 20mg a day, 10 in morning. 10 in evening!!!!
i was really hoping things would have been settled by now!! Am i wrong in thinking we should see major improvements? Not only is she still flaring but she had new joints swelling!!
i just feel totally lost, Lucy's mood is going down hill having to cope with all the ups and downs of the illness, my moods are up and down having to cope with her illness and her moods it just feels like it never ends x x
we are just not happy bunnies, there feels like there is no light at the end of the tunnel :cry:

Comments

  • louiserichard
    louiserichard Member Posts: 52
    edited 30. Nov -1, 00:00
    Hi

    Sorry to hear Lucy is still not feeling good. When I was put on methotrexate back in my early teens they also told me 3 months. However for me it took 6 months before it started working. I guess this may by the case for Lucy too.

    I remember saying to my mum at the time that i thought it was rubbish and I wanted to stop taking it. Now over 10 years on I have taken it all this time and found it amazing (just come off it to try and concieve but wouldn't if i didnt have to! Will be right back on it afterwards :). The longer i took it the better it worked and it has def helped stop joint damage.

    Fingers crossed it will kick in soon. x
  • speedalong
    speedalong Member Posts: 3,272
    edited 30. Nov -1, 00:00
    Hi Lucy's mum,

    just to say sorry things still aren't improving for poor Lucy. I went through similiar with S when his epilepsy wasn't under control and he was suffering mood swings, panic attacks and it was really affecting his behaviour. Neither of us were getting much sleep and I felt so powerless and it seemed to go on for ever ...

    You need to take care of you too so that you have the strength to carry on supporting Lucy until she get stabilised. Allow friends and family to give you the occasional couple of hours off to recharge your batteries.

    Take care,

    Speedaloing
  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    thanks for the kind words!!! I did not know it could take 6 months for mtx to kick in, bless her!! She is just so exhausted, sick of fighting this illness and fed up of not being like her peers. I think one of the things with Lucy's emotions is that she has been suffering but adapting untreated since she was about 3 ish and at now 7, only just being dignosed before christmas, her body and her mind have had enough!!
    She is a little trooper and carried on regardless, dispite all the emotional issues she is still an amazing little girl and i am so proud of how she is going along
  • speedalong
    speedalong Member Posts: 3,272
    edited 30. Nov -1, 00:00
    She sounds one very special girl and with you and the fab team of medics she has supporting her she will get there and things will improve.

    It took years to get S sorted ... he went from being SO healthy to having a whole myriad of problems (epilepsy, IBS, severe constipation, panic attacks) life isn't perfect now - but he once again has a good quality of life and his various medical conditions are more or less managed.

    You will get there,

    Speedalong
  • barbara12
    barbara12 Member Posts: 21,256
    edited 30. Nov -1, 00:00
    Hi Lucysmum
    Just to send you some hugs for you and lucy((((((())))), you will get there, but we are all here for you when you need to talk.
    You take care
    Barbara x
  • andylambs
    andylambs Member Posts: 71
    edited 30. Nov -1, 00:00
    Good luck to you and Lucy, Lucysmum. It's certainly a rollercoaster. Hang on in there. We're thinking of you.
  • lucymum
    lucymum Member Posts: 113
    edited 30. Nov -1, 00:00
    well i rang in an update on her today and as nothing has changed she still has no energy and is struggling they suggested i keep her off school to rest tomottoe and they want to see her wednesday!!!
    they said to pack a bag just in case!!
    i just worry that i will get there and they will not see the struggling little girl i do, maybe i am pushing her too much sending her to school all the time!!!
    well i am keeping my fingers crossed that they can sort something out

    hope u and ur kids are all well
    thanks for letting me rant x x x
  • speedalong
    speedalong Member Posts: 3,272
    edited 30. Nov -1, 00:00
    Hi Lucy'smum, if all your posts are anything to go by Lucy has a great medical team behind her and they will see exactly what is going on with Lucy. The fact they have said pack a bag - means they are listening and taking your concerns seriously. I think you are absolutely right to send her to school whenever possible - first and foremost she is a little girl who needs life as ordinary as possible and every opportunity to learn, socialise and take her mind off her problems. Don't be so hard on yourself!! Keep us posted on how Lucy is doing.

    Speedalong

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