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My 3 year old just been diagnosed

illihorillihor Posts: 283
edited 9. Oct 2009, 11:22 in My Child Has Arthritis
i don't even know what type as my gp has just sent off a referal for rheumatology but by readying it all I think it may be that second one on the list.

Her feet/ankles hurt her so much her knees are swollen up like tennis balls, she can hardly use her hands/wrists, she's now complaining her her arm and shoulders and she has trouble eating and although loves pork can't eat it as too chewy for her :(

I'm sure she's lost weight as for the past year she's been refusing to eat most days. It's taken soo many attempts to get a dr to listen to me that something is wrong not just she's a stubborn toddler with a new baby. I have 4 children two boys aged 5 and 6 and an 11 month old.

I can't get her to walk up the road let alone to nursery etc and all my gp would give after I asked if it as ok to give nurofen was prescribe nurofen. which although makes her slightly less more comfortable isn't doing a thing for her.

She has gone from a bouncing happy 3 year old to a recluse. she won't engage with other children for fear of them touching her and hurting her (accidentally) the one thing i've found she loves is swimming.

I already have a disabled husband and this has knocked me for six. I thought she was just ill not something like this that could potentially be for a very long time. i just don't know what to do for her or ho to help her feel better although life has gotten a bit easier now I know what it is as she's not just a whiny toddler but one in pain if you get me. I'm more sympathetic to her needs and if she knocks her hand or any part of her body i'm there for her instead of just get on with it.

Sorry to go on I just don't know what to do or what the next steps are going to be as my gp was useless i had written down everything that I had noticed on 3 A5 sheets for him and all he did was look at her joints tell me that and refer her and send us on our way it was me asking what pain relief i could give her that even prompted him to offer nurofen.

Oh forgot to say she's also got to have grommets in just over a weeks time and they told me she has to have a cannula in which I understand but does it have to be her hands they are the worst part of her body I'm not allowed to even touch them god knows how they are going to get it in.

Comments

  • bexmumbexmum Posts: 5
    edited 30. Nov -1, 00:00
    Hi there. I'm so sorry your little girl is in so much pain and i understand how much it must be tearing you apart. My daughter was diagnosed with sero-negative (doesn't show up in blood tests)juvenile (young) idiopathic (they haven't a clue what causes it) arthritis when she was 3 and was in so much pain we couldn't touch her to cuddle her. The emotion and helplessness we felt nearly tore us to pieces. You must fight for an early referral as the earlier she is diagnosed (and if she does have arthritis) the earlier she can get the proper treatment. Bex also had tennis ball ankles and knees and over the next 7 years it spread to most of the joints in her body from her toes to her jaw but at 10 she had 70 joint injections and now, apart from the damage caused by not having the injections earlier, you would not know she has this disease and it is currently non-active.
    Every case is different but the important thing is to research and get the best care. make sure the consultant is a specialist paediatric rheumatologist. We found calpol to be most effective. GPs don't see much JIA so arm yourself with research and ask the thousand and one questions of him and the specialist. They have to answer you or look daft!

    I hope the grommets op goes ok, don't worry too much about the cannula, i'm sure the nurses will manage her fine. They can give her a mild sedative med to make it easier.

    If you want to private message me, please feel free. I've been through the journey you are about to embark on and I don't want to bore enyone else reading this with all the specifics!You are a wonderful mum and your little daughter is lucky to have you caring so much about her. I wish you all the best. Let us know how things go! Dee
    xx
  • elnafinnelnafinn Posts: 8,043
    edited 30. Nov -1, 00:00
    Dear illihor

    I am devasted reading your story, as I am for all those with little ones that get diagnosed so young. My heart goes out to you. I wish I could help you. You have so much to contend with. I hope you and Dee private message each other. It certainly helps to speak with someone else in the same situation or similar. There are some other mums on here that hopefully you can chat with but I know Dee will be there for you as we all are on here but it does make it easier to share ones worries and fears with someone who is actually going through what you are at this time.

    Lots of love and gentle hugs to you and please give your little girl a kiss from me,

    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.
  • illihorillihor Posts: 283
    edited 30. Nov -1, 00:00
    Thank you for replying. life has been so hectic here this is the first time i've gotten on. My baby now has an ear infection so the two girls are now both on meds at least baby will be over quickly though. My 3 year olds grommet op has been put back something to do with an emergency case being booked in all day :( just when I thought things were going to get better for her.
  • c4thygc4thyg Posts: 542
    edited 30. Nov -1, 00:00
    I feel that I have to say something even though I'm not sure what. I have inflammatory arthritis and a 3 year old daughter and the though of her having to go through the pain that I do is too much. Your story has brought tears to my eyes. I can't offer any practical support as I haven't any experience with juvenile arthritis but I wanted you to know that I'm thinking of you and your family. Please let us know how you get on. This board is great for support and advice and I'm sure that you will find both here. We are here to listen when you need someone.

    Cathy
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