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Just had JIA diagnosis - dont know what to expect next!

PopsiclePopsicle Posts: 5
edited 8. Oct 2014, 10:46 in My Child Has Arthritis
My 2 yr old son after 8 weeks of limping, plaster casts, MRI's, scans, etc, etc has finally been diagnosed with JIA. I was feeling actually quite calm about the whole thing and trying not to jump the gun and get carried away with worrying about the unknown. Today I met with someone at the hospital who basically just explained it all in more detail than the consultant and gave me info to read, well now i'm panicking!

I hate not knowing what is coming next, whether it will spread, whether the steroid injection will work and for how long, whether its going to make him immobile (he did have it in just one ankle 2 weeks ago but now has spread to the other too) and how much its going to affect him and for how long. I dont want to worry unneccessarily but equally i dont want to pretend like nothing is wrong when it clearly is.

Is it potentially going to be at least temporarily fixed with a couple of steriod injections or is that wishful thinking?? Poor little sausage had a new scooter for christmas and hasnt even used it yet! We cant take him outside really as he struggles with shoes at the moment as his feet are almost slightly deformed from it at the moment and he'll pay the price for it the next day. At least once the summers here, he can go in nice soft shoes! I know there are some children who are suffering ten times worse than he is - should i be grateful for small mercies in that its only in 2 joints?

Any advice or support greatly appreciated - think the reality is just hitting home now!

Comments

  • stickywicketstickywicket Posts: 25,998 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello popsicle. I was so sorry to read of your little boy's diagnosis. I'm not the parent of a child with arthritis but I've had it myself since I was 15 (ie 53 years) and I have children and two small grandsons of my own. It must have come as a shock after the initial relief of actually having a diagnosis.

    At least you have that diagnosis and have it quickly and that is important. I so understand your perplexity and wanting hard and fast answers but I'm afraid it rarely works like that. The bad news first – there's no cure and there is a lot of uncertainty about what happens next etc. The good news is that, if your little fellow is lucky, the steroids will work (They don't for everyone) and you will probably feel that he's been cured. He hasn't. Steroids mask the symptoms and make us feel great but they don't take the disease away and are not a long term solution though great for a bit of respite.

    Will it spread? How much will it affect him? I doubt anyone can answer those questions. We learn to live with uncertainty. With luck the medication will hold the disease at bay and he'll soon be on that scooter. However, it can take a while to get the right combination of medication. Everyone's arthritis progresses at a different pace. Let's hope your little son is one of the lucky ones. The early diagnosis will help there.

    I'm sorry about all the uncertainty. Maybe some of Arthritis Care's publications will help http://www.arthritiscare.org.uk/PublicationsandResources/Youngpeopleandfamilies And you could always ring our Helplines for a chat about it.

    I wish you and your son the very best in outcome and treatment. Please ask about shoes when you next see his rheumatologist as, for an adult, soft shoes aren't a good option as they don't support the feet properly. It might be different with small children and, if the steroids work, the shoe question might be obsolete anyway. I hope so.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, it's lovely to meet you but how I wish you didn't need to find us. People associate arthritis with the elderly and often flatly refuse to believe it can occur in childhood but you know that is not the case. I do not have children (a deliberate decision) but I truly feel for the parents on here.

    None of us know what the future holds but when life is jogging along as it should we're not usually that bothered about it. Now there are doubts, fears, worries and huge uncertainty - all utterly ghastly in themselves but when combined . . . . . unspeakable. Every person's arthritis is unique to them, it's unique in what it does, when it does it, where it does it and how. The why is still not fully understood and the 'who it does it to' can be predictable or random. I don't know how things will go for your lad, I think all you can do is take it one day at a time. Sometimes the meds help and sometimes they don't. Some days are better than others, he may well be very tired at times (all arthritics are tired) and he won't be able to tell you as yet how he is feeling. It may be worth your starting a daily diary (nothing too long-winded) so you can record behaviours etc. and then you may be able to build a picture of how things are going, what helps or exacerbates, the signs that things are not too bonny or are OK - of course you know your son but now you have to see him in a different light. It cannot be easy and I hope that you have familial support.

    My lunch is ready, I have to go. I hope other parents spot your post and reply, I wish you both well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • FreyasMumFreyasMum Posts: 2
    edited 30. Nov -1, 00:00
    Hi Popsicle, l have been reading posts on this forum for a couple of years now after my daughter was diagnosed with JIA nearly 3 years ago (a month before her second birthday). I have never been a member of this forum until tonight, after reading your post l felt l needed to send a post to you as you reminded me so much of how l felt when Freya was first diagnosed. I tried to read as much as l could on the subject and speak to as many others as possible to try and get a glimpse into our future with JIA. I want to hopefully give you some hope. When Freya was diagnosed her right wrist and right knee were affected. She would cry in pain most nights, she 'hobbled' along when walking and it left me heartbroken. This went on for 9months, memorable low points for me -
    1) after dropping my eldest to school one morning l let Freya get out of the pushchair to 'walk' home. As I bent over her to help along we finally got to the school gates and l lifted my head to notice that there wasn't one other mum to be seen. I then realised it had taken us 25mins just to walk a couple of hundred yards. I felt so alone and sad.
    2) meeting another mum at the hospital who had a fold up wheelchair in the back of the car for when her daughters joints were painful. That was like a punch to the stomach thinking this is what was in store for us.
    3) after 8 months of arthritis in 2 joints it spread to a third joint.

    Now the positive, Freya has been symptom free for 2 years after one dose of steroid injection in each affected joint. She has been off anti inflammatories for 1 1/2 years. We were told that if the injections didn't work then the next step would be for Freya to take Methotrexate. Luckily we never had to go down that road. Freya has gained full mobility in both her knee joints but her wrist is still slightly stiff. We are so grateful that this horrible disease has gone from our lives (maybe forever? Maybe back tomorrow? No one can say) all l know is that is was a very dark time for me and my husband and I should have won an oscar for my positive performances put on for Freya at blood tests, injections etc.

    As a family we attended a weekend event run by the charity CCAA. We learnt a lot and meeting other families really helped put things in perspective for me. I would recommend attending anything like that you can. I hope you don't have too much of a rough ride ahead. I hope l have helped in some way.
  • RafiqueRafique Posts: 2
    edited 30. Nov -1, 00:00
    Dear Freyasmum,
    my 8 years daughter has Oligoarticular arthritis . she is taking MTX and folic acid and Deflazacort and now she is ok.

    Can you remember the steroid injection which has pushed in to your daughter joint and you found it is effective for more than 2 years.
  • FreyasMumFreyasMum Posts: 2
    edited 30. Nov -1, 00:00
    Hi Rafique,

    Unfortunately l have no idea what type of steroid was used to inject my daughters joints.

    I am pleased to hear that your daughter is doing well after her treatment.
  • stickywicketstickywicket Posts: 25,998 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello rafique. I'm so pleased to hear your daughter is doing well :D

    Steroids are not a miracle cure though they can seem as if they are. They are a good, short-term solution but are not a good long-term solution.

    The steroid injections can work well for some people but not at all for others. It's only rarely that their effects last for more than two months and, as your daughter is already taking oral steroids, I think it's unlikely she'd also be offered more by injection. However, it seems as if she doesn't need them so the methotrexate is working well and that is good :D
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
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