Everything is happening so fast now

illihor
illihor Member Posts: 283
edited 15. Dec 2009, 16:54 in My Child Has Arthritis
and I'm struggling to keep up with it all.

As you know we have been waiting to see someone about Kayleigh for ages now. On december 1st we finally saw a consultant and since then things have happened VERY fast. We saw her again on 2nd and her ibuprofen got upped to 4 times a day 6.25mls and she contacted Bristol who wanted to see her. So on 10th was up there and they agree with down here about what is wrong but now think it's not only polyarticular but psoriatic :( both my dad and brother have and it's hereditary which the way how both of them have gone down hill so fast makes me shudder to think what's going to be in her future.

Anyway Bristol have told Derriford it's time to speed things up so got a call yesterday that iv steroids are to be given this week. She had her first lot today and is home with the venflon in her hand (her bad one as well :( as they couldn't get it in, tried twice, in her other she cried soo much and I was in tears to). She had more bloods taken today as well so that was 5 last week 3 this week poor girl. But they are looking for genetic markers i think she said for the psoriatic one. she turned out to be rheumatoid negative but in the same breath told me that doesn't mean she doesn't have it as x-rays are telling a different story. She's to have an MRI on her hips and jaw as she won't let anyone look at them. So we've got steroids again tomorrow and thursday so that's yet more school/nursery missed. They break up on Friday typical and due to all the hossie appointments/bloods etc she's only been in 3 times this month.

On 23rd we have a physio appointment and we saw her today and she said i've been told she has it in a lot of joints doesn't she I said yes but i don't know how many she said in the report I have it says it's in 30+ joints :shock: This has upset me hearing it in these terms me saying feet, ankles, knees, hips, hands, wrists, elbows, shoulders and jaw seems so much nicer. They want to get her into hydrotherapy and once i've been shown what to do then I can adapt to bath times or normal pool sessions however on flare ups we've been told she'll have an open appointment so we can call up and go to help ease at bad times.

Haven't been told when for MRi but it will be under GA :( and I'm guessing it will be before April at least when consultant from BRistol comes down and sees her again. She's been booked into royal eye infirmary for the eye exams but yet to be told times etc.

I also spoke with dr today about her feet as she turned up in hossie today in her slippers as I can't get her to put on ANY shoes now. Gonna try and see if clarkes have any that doesn't hurt her but I'm not banking on it as it's the drop in her ankle bones that is causing her pain. So she's being referred to podiatory for perhaps shoes or see what they can do to help.

Got the nurse callling us when she comes back off holiday next week about getting methatrexate started but they are by-passing the tablets and going straight onto injections.

DLA have written and said they have written to consultant before they can make a decission so again I told her today about that and she said well she deserves it poor child don't worry I'll get the letter and write back asap as she needs all the help she can get. I think I've landed on my feet with this team of drs/nurses/school etc as i'm not having any problems and things are finally getting done shame it's taken so long though.

At the moment my head is such a whirlwind and not sure if i'm coming or going and was grateful dentist called up today and cancelled boys checkup due to dentist going off sick as had totally forgotten and was still stuck up the hossie.

I've been told with the steroids and methotrexate that kayleigh can't have live vaccines (thank goodness she's had pre-school booster already) and she needs swine flu jab (i'm still unsure on this one but seeing as loads in school keep coming down with it i guess it's for the best) seeing gp on thursday so will book it in then.

Comments

  • steph120786
    steph120786 Member Posts: 66
    edited 30. Nov -1, 00:00
    Only Meeeee

    So glad to hear that things are now moving, although things are moving fast just remember this is all to help kayleigh.. and hopefully will ease her pain.

    I could cry with you for steriods it is the worst thing every seeing someone you love go through all this pain let alone the age our girls are at.

    Mtx inj... tablet didnt work for us and where alot harder to adminiter we are on injection and although still hard work I do find them easier than tablets and Kaitlin is starting to get used to them ( albeit only slightly) nurses help with this at first..

    keep doing what you are doing you are a fantastic mum as we all can see, remember if you need anything questions a rant anything you know where i am and obviously this forum has been a great help to us all

    all our love
    steph and kaitlin xxxxxx
  • shannonsmum
    shannonsmum Member Posts: 68
    edited 30. Nov -1, 00:00
    Hi There,

    I just wanted to send you both lots of ((((((((((( hugs)))))))))).

    Its hard being a mummy and watching our babys go through this. Hope things ease for her soon and she starts to get some comfort with her joints.

    Take Care
    Love
    Sam