Extended Oligoarthritis my 3 year old

steph120786
steph120786 Member Posts: 66
edited 16. Nov 2009, 16:23 in My child has arthritis

Hi

Am new to this, just wanted to be able to share my experience's and hopefully learn more about this illness, My 3 year year old daughter was diagnosed at 18 months with jia, is has spead from knees to ankles and most recently her wrist and finger, she has just had her 5th set of joint injections and is now moving onto injection methotraxate after a year of tablets,.
Would just like to talk to others in same situation, as although friend and family try to understand it is very difficult.
Thanks

Comments

  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    hello i'm Michelle a mum to 4 and my daughter is having her first rhuematology on 1st december. She will be 4 on 27th november and has had it for better part of this year but gp confirmed it was juvenille arthritis in August and we've waited this long to get seen up hospital :(

    I know what you mean about friends and family, my parents are really good and supportive about it (probably helps my dad has arthritis so they understand) but the rest just don't get it. They seem to think it's like a bad cold for them but they should just get on with things and why shouldn't she be doing this and that etc. The inlaws are the worst, they just don't seem to understand and since i've told them we've not had one call to see how she's doing or how it affects her etc they haven't even seen her since ermm July I think so they will be very shocked to see how she is now. We don't go round there's as they have two irish wolf hounds and 2 of my kids are scared silly of dogs. One of them being the one with JA and she can't stand to be touched by others and is very wary of people so for dogs omg she would be permantly attached to me and i so can't be doing with that.

    People don't understand either if i say no we can't do something due to the pain she's in they say oh give her nurofen or calpol she'll be fine but she's already on those meds (until hopefully december) and it just doesn't cut it for the pain.

    Hugs to you xxx
  • steph120786
    steph120786 Member Posts: 66
    edited 30. Nov -1, 00:00
    illihor wrote:
    hello i'm Michelle a mum to 4 and my daughter is having her first rhuematology on 1st december. She will be 4 on 27th november and has had it for better part of this year but gp confirmed it was juvenille arthritis in August and we've waited this long to get seen up hospital :(

    I know what you mean about friends and family, my parents are really good and supportive about it (probably helps my dad has arthritis so they understand) but the rest just don't get it. They seem to think it's like a bad cold for them but they should just get on with things and why shouldn't she be doing this and that etc. The inlaws are the worst, they just don't seem to understand and since i've told them we've not had one call to see how she's doing or how it affects her etc they haven't even seen her since ermm July I think so they will be very shocked to see how she is now. We don't go round there's as they have two irish wolf hounds and 2 of my kids are scared silly of dogs. One of them being the one with JA and she can't stand to be touched by others and is very wary of people so for dogs omg she would be permantly attached to me and i so can't be doing with that.

    People don't understand either if i say no we can't do something due to the pain she's in they say oh give her nurofen or calpol she'll be fine but she's already on those meds (until hopefully december) and it just doesn't cut it for the pain.

    Hugs to you xxx

    Hi michelle thank you for replying, so sorry to hear about your daughter. I hope all goes well at your appointment in december.

    its difficult to understand even as a parent its just so unpredictable even the doctors seem to take the wait and see approach. others see them whilst on all meds and usually under some sort of control just think they are normal and yet again it left to us to deal with the realities.

    the thing is it them closest that are seeing and coping with all the bad days and to be honest there is that much going on how are you supposed to remember everything for those important appiontments that are so far apart

    have you seen any changes in your daughters behaviour? as my daughter has been more and more difficult especially with meds.

    again thank you for responding and please do keep us informed of your daughters progress

    Steph
    xx
  • illihor
    illihor Member Posts: 283
    edited 30. Nov -1, 00:00
    I'm starting to keep a diary of everything that happens now. For the time being I'm storing it on my ipod but once the new year kicks i'm gonna start using a big diary (you know the sort hv's use) and recording everything in that and taking it EVERYWHERE so if I notice something it can go straight down.

    My daughter gets a temp daily and depending on what's been happening gets pains in different parts. I can't remember what joints you said your daughter had, but my little girl I clearly remember it being her feet and hands first. It's now progressed rapidly and it's in her toes/feet/ankles/knees/hips/pelvis/base of spine/ fingers/thumbs/knuckles/wrists/elbows and lately she's been complaining of her shoulders and jaw :(

    yes I've seen a lot of changes in my daughters behaviour which looking back I would say is def linked to this as she dotes on her sister. But I had a baby october 08 and around easter I started noticing changes but put it down to new baby syndrome (I have 4 children 2 boys 5 and 6 years old and 2 daughters almost 4 and 1 years old) as all toddlers seem to regress a little when a baby is born but this never happened with Kayleigh (my daughter with JA) until easter time and i got confused then in june started complaining about her feet so took her dr's who fobbed me off bent her toe so far back (mine don't even go like that) so every time I mentioned dr she refused and said she was ok. Then in august right at beginning we went on holiday this is when our eyes were opened and we knew something was wrong, as what kid honestly you take them to a dinosaur park, big sheep, fun things for kids lots of slides and playgrounds and soft play areas and all she wants to do is sit in the pushchair as she's ouch.

    I end up crying myself to sleep pretty much every night as I hate seeing her in so much pain and she's very specific if you ask her yet if a dr asks she says no i'm ok grrrrrr (she also had a bad head injury from school 3/4 weeks ago where it needed gluing and mild concussion and hated dr's touching it to clean it etc so has that as an extra added fear :( )

    I hate the days she's in so much pain you can't even hug her yet people look at me like i'm stupid why can't you hug her ermmmm cuz it hurts to much for her, i feel so helpless. I'm dreading this initial appointment and what they will find as a lot of her joints are so obviously out of whack and huge. We have only been given ibuprofen 3 times a day and paracetamol 4 times a day as gp says that's all she can be given till seen specialist which unfortunately considering it was august she got diagnosed we only seeing on 1st dec.

    if ever you want to chat more etc i'm on facebook and msn so if you want i'll pm you my details.

    Michelle xxx

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