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Mum with a child who has arthritis

tomandharrysmumtomandharrysmum Posts: 2
edited 15. Jan 2010, 07:16 in Say Hello Archive
Hi, my name is Sharon and my 2 year old was diagnosed with arthritis last year. I am looking for help with regard to the treatment he is receiving as I do not think it is good enough but don't seem to know where to turn.

Problems started with 2 local hospitals closing to make way for a new hospital opening but the opening of that hospital did not go to plan so it has been a very slow process. My Consultant has problems getting lists for steroid injections that my son really needs but due to hospital policies these lists are not coming quick enough.

He had his first lot of injections in August last year but the injections to his ankles wore off after 6 weeks and I am still waiting for the next lot. I have no idea what long term effect this will have and would like to try and get a private consultation for him but cannot find anywhere that does it.

Any help would be appreciated.

Thanks

Sharon xxx

Comments

  • elnafinnelnafinn Posts: 8,043
    edited 30. Nov -1, 00:00
    Hi Sharon

    Welcome to the forum. I am so sorry to learn that your little one has been diagnosed with arthritis. Steroid injections can be most helpful but often do not last too long. I believe adults are allowed 3 such injections per year.

    I am sorry to see that you are not getting enough help with treatment for your 2 year old either. It must all be such a worry for you.

    Would your gp or surgery not be able to help you with names of consultants who practice privately or both?

    What about phoning BUPA or similar and asking them for details of the appropriate nearest private consultant?

    There are mums on here with youngsters with arthritis and I hope they see your posting and reply.

    Sorry I cannot help but I really do sympathise.

    Luv
    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • elnafinnelnafinn Posts: 8,043
    edited 30. Nov -1, 00:00
    It is me again, you would probably get more response if you copied your posting onto the Young People's Zone/Living with Arthritis Zone.

    E x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • barbara12barbara12 Posts: 20,867
    edited 30. Nov -1, 00:00
    Hi just to say welcome,
    Sorry I cant help much, but you will get advice from someone with children on this forum, like Elna says put a post in the young people part. Hope you get help very soon for your little boy.
    Take care
    Barbara x
    Love
    Barbara
  • steph120786steph120786 Posts: 66
    edited 30. Nov -1, 00:00
    Hiya

    Just to let you know you are not alone. Big Hugs

    My daughter was diagnosed at about 18mths she has just turned 3.. it just seems to be one thing after another.
    Have you tried NHS direct or your gp for other consultants in and around your area??

    let us know how you get onm keep fighting.
    love steph xx
  • clairyclairy Posts: 29
    edited 30. Nov -1, 00:00
    Hi Sharon,

    Might not be able to be much help as i'm a "grown up" JIA patient lol but do you have another hospital near by?

    Is your consulant a Peadiatric Rheumatoligist? If not it might be worth asking your GP to refer you to a Pead Rheumy they might be further away but a lo of places do shared care for children where the pead rheumy would be in charge of you sons care, but your local rheumy would see you inbetween times.

    As for a private consultant your GP should be able to point you in the right direction too.

    Has the doctor suggested any other treament? I remeber my pead rheumy decribing it to me as they use steriod injections as a fire extinguisher when your joints as bad to give the other medicine a chance to control your arthritis. I don't know what the treatment options would be as you son is so young, but there should be something they can do to help.

    It may also be worth contacting PALS in your hospital to complain about the delays that the new hospital has cause as that is just awful.

    Good Luck
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