Child with systemic JIA

worrywart
worrywart Member Posts: 4
edited 18. Jun 2009, 19:34 in Living with Arthritis archive
My child was diagnosed with Systemic JIA January 2008. we have had loads of ups and downs since then and also loads of worry! he is currently doing well but is still on lots of medication has come off the prednisolone but methotrexate taken over, takes this and other medicines also gets very low in iron,so takes iron every day. has anyone else got this arthritis, my child is 11 and he has some bad days with lots of stiffness and aches, but some days are really good. with this sort of arthritis it affects the system so he gets loads of chest infections and plurasy. he has hydro and clinic visits every three months now. but i would just like to know a bit more about this illness if anyone has any info. it is all a worry and has taken a long time to get my head around it all. i have given up work to look after him as he needs care and help with most things. he has home tuition but does go to school when feeling ok.. any information would be appreciated.

Comments

  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    HELLO I can't really answer your question properly, as it is something I've never had. I'm sure you will soon get someone more helpful on, as I know people have posted with these problems before.

    So, I'll just say how sorry I am for you all as a family, and hope you get lots of useful advice. One thing about this site is that someone usually has experience and knowledge to help you. Its also good to speak to someone outside your immediate family and friends.
    Good Luck LOve Sue
  • frogmorton
    frogmorton Member Posts: 29,901
    edited 30. Nov -1, 00:00
    Hi Worrywort
    That's one of my bad habits too worrying about EVERYTHING!!!
    Seriously though I am lucky that my kids are ok, but there ARE mothers (maybe fathers too ) who use thsi forum who have children as young as 2 with it.
    The young person's forum is full of young persons(der!!! was THAT obvious?) some of whom have had it from a very young age.
    Thye might be worth a try too - although they might not respond too quickly because they have lives! :wink:
    On this forrum you could do a search putting in JIA and you should get lots of old posts from other parents.
    I am so sorry about you child as I know how hard and exhausting this is and it would be so hard for him to function at school and everything. My youngest is 11.
    If you need support or just a moan we will always be here for you
    Love
    Toni xx
  • mistywillow
    mistywillow Member Posts: 711
    edited 30. Nov -1, 00:00
    frogmorton wrote:
    Hi Worrywort
    That's one of my bad habits too worrying about EVERYTHING!!!
    Seriously though I am lucky that my kids are ok, but there ARE mothers (maybe fathers too ) who use thsi forum who have children as young as 2 with it.
    The young person's forum is full of young persons(der!!! was THAT obvious?) some of whom have had it from a very young age.
    Thye might be worth a try too - although they might not respond too quickly because they have lives! :wink:
    On this forrum you could do a search putting in JIA and you should get lots of old posts from other parents.
    I am so sorry about you child as I know how hard and exhausting this is and it would be so hard for him to function at school and everything. My youngest is 11.
    If you need support or just a moan we will always be here for you
    Love
    Toni xx


    Hi
    As Toni has said there are people on the site who could give you some first hand info and I am sure they will when they read your post. I just wanted to offer my support and sympathy. It must be so difficult to have to watch your child suffer. I hope you get some useful advice on how others cope with it.
    Gillx
  • frogmorton
    frogmorton Member Posts: 29,901
    edited 30. Nov -1, 00:00
    Have bumped up the hello we are new thread for you to have a look at. There are more if you ahve time to go back...
    Toni x
  • worrywart
    worrywart Member Posts: 4
    edited 30. Nov -1, 00:00
    Thankyou so much for your replies, i am new to this site and the info has been great lately, it also makes you realise there is alot of people out there going through worse...it is just so hard at times but hopefully the medication will work its wounders and it will all go away, I keep telling myself that every day... but things could be worse, my son is doing well at the moment, its just scary the not knowing as well. and the bad days are awfull. but blood results good today and joints are quite at the moment.. fingers crossed....I am really pleased i have found this site though.. i just carnt get away at times i keep reading all the different posts...
  • frogmorton
    frogmorton Member Posts: 29,901
    edited 30. Nov -1, 00:00
    Hi Worrywort
    You will be like that for a while reading and rereading posts - it dOES help though and gradually you will get your head round it all.
    In the meantime keep posting and we will all be here for you
    Take care
    Toni xx
  • lindalegs
    lindalegs Member Posts: 5,397
    edited 30. Nov -1, 00:00
    Hi Worrywart,

    I haven't first hand experience of Juvenile Arthritis but I did have a dear friend who had JA since she was 2. She has sadly died now (but not of arthritis) as she was quite eldery when I first met her.

    Margery was a wonderful lady, a brilliant water colour artist, which she taught too. Her work was much sought after and was even commissioned by the coal board during the pit closures in order to commit mining scenes on canvas.

    I tell you this because she wasn't too debilitated by the disease and she grew up during the times when medication wasn't as good as it is today. She was married for over 50 years to the same man and had two sons. She walked very regally with a stick, had knee replacements and a few neck problems but she was the sort of person who would light up a room when she entered it - I always felt the she held the sunshine on a piece of string and it followed her everywhere. I felt privileged and honoured to know her.

    Your son has everything on his side, he has modern medication, a good team of medical helpers and you, his Mum to support him.

    Try not to worry too much - your son will build his life around his illness but there's nothing to say that his life still won't be a good one.

    Hope this helps.

    Luv Legs :D
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • debatat
    debatat Member Posts: 659
    edited 30. Nov -1, 00:00
    Hi Worrywart

    I don't have experience of dealing with this illness, but I do know how exhausting it is caring for a child with a chronic illness. It can be so draining, I just wanted to remind you to take care of yourself. Have some 'me' time to recharge your batteries, it helps.

    Legs wrote a lovely post and it is true, modern medicine works marvels. You sound like a wonderfully caring mom who is doing everything to help her son. Keep at it and carry on posting and let us know how things are.

    Take care

    Deb
  • joyful164
    joyful164 Member Posts: 2,401
    edited 30. Nov -1, 00:00
    worrywart wrote:
    My child was diagnosed with Systemic JIA January 2008. we have had loads of ups and downs since then and also loads of worry! he is currently doing well but is still on lots of medication has come off the prednisolone but methotrexate taken over, takes this and other medicines also gets very low in iron,so takes iron every day. has anyone else got this arthritis, my child is 11 and he has some bad days with lots of stiffness and aches, but some days are really good. with this sort of arthritis it affects the system so he gets loads of chest infections and plurasy. he has hydro and clinic visits every three months now. but i would just like to know a bit more about this illness if anyone has any info. it is all a worry and has taken a long time to get my head around it all. i have given up work to look after him as he needs care and help with most things. he has home tuition but does go to school when feeling ok.. any information would be appreciated.

    I think it might be ideal if you had a word with the Helpline Team. You say that your son has come off steroid. I am coming off them aswell and the helpline team gave me some very useful information about this topic. Goodluck.

    joyful
  • worrywart
    worrywart Member Posts: 4
    edited 30. Nov -1, 00:00
    Thankyou all for your replies and thankyou lindalegs that was a lovely reply which gives alot of hope for the future. it really is helpfull reading these posts, and i also wish everyone else the very best with what they are going through... i will keep reading and posting.. I am more hopefull with everything now, and things are going well at the moment.. fingers crossed!!!.. Thankyou again..