Hi, Welcome!

The community is a safe space for people living with and connected to arthritis to ask questions and share experiences. Get started by registering here and posting your first comment or question!

Sign In with a Versus Arthritis account

However your life is impacted by arthritis we want to understand more about you so that we can make sure we continue to develop our information, support and services such as the online community.


If you've not already, please take 5 -10 minutes to fill in our survey. All information you provide will remain anonymous and be treated in the strictest confidence. TAKE OUR SURVEY

4 yrs old diagnosed today - some questions if i may

dansdaddansdad Posts: 2
edited 26. Nov 2012, 20:56 in My Child Has Arthritis
Hi,

My boys left knee had suffered 3 big swelling events in the last 8 months that has left him hobbling for 2 weeks at a time. Today we saw a consultant who has assessed it as almost certainly arthritis and referred him for a MRI and taken blood tests. A few things were said but we were that shocked it all seems a bit of a blur. A few questions I have if anyone can help...

a) The problem seems local to the left knee. All other joints seemed ok. How does arthritis work? Is it possible that only this joint can be effected.

b) Does it ever just go away? I have read it's incurable but I note another website said that 50% of kids have it for longer than 10 years and only 33% take it into adulthood. The consultant seemed positive and said in most cases its treatable. Dose this mean 1 steroid jab, steroids for ever more, physio?

c) Does it manifest itself in day to day life or is it just at times of flare up?

I was surprised it was arthritis. It's not worse in the mornings and although the swelling and limping is bad when it flares up he rarely complains of pain. Gutted for the poor little mite, he's had it rough so far, aside from the arthritis.

Many thanks

Comments

  • dreamdaisydreamdaisy Posts: 31,553 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello dansdad, I would like to say that it's lovely to meet you but you know what? It isn't, not really. Your poor lad - and poor you too, what a total shock this must be. Everyone associates arthritis with the elderly and you have had the totally pants experience of discovering that it ain't so.

    I began my arthritis in my left knee but I was 37. I don't know enough about JIA etc but I do know enough to say that no-one can guarantee what will happen or when. I would urge you not to googbingjeevesask too much, talk to the consultant, AC might have some relevant information and hopefully other parents will be along in due to course to help with support and encouragement.

    The future may not be as bleak as it seems but I realise that that is a very difficult concept at the moment. Your world has been turned on its head - I hope that the docs, and us on here, can right it for you. Take care and I will keep in touch. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicketstickywicket Posts: 25,867
    edited 30. Nov -1, 00:00
    Hi dansdad. Yes, I’m sure it was a shock and I don’t wonder everything seems a bit of a blur. I’ve had RA myself since I was 15. I’m not the parent of a child with arthritis as, thankfully, both my sons and grandsons are free of it but I can imagine the devastation and confusion that you feel.

    If you go to the ‘Publications and Resources’ at the top of the page, you’ll find a booklet on juvenile arthritis which should be helpful. It’s hard to answer your questions as any of the auto-immune varieties of arthritis are illusive beasts to pin down. From what I know personally, and have read on here, I’d say it’s unlikely that only one joint will be affected. I’ve never actually heard of it not being treatable but I would be surprised if only 33% take it into adulthood. Steroids are only one form of treatment and not, usually, a long-term one. Usually patients of all ages are started on Disease Modifying Anti-Rheumatic Drugs (DMARDS). Physio can help a lot, particularly if a joint is not being used fully owing to pain. Question C is really difficult as it’s such an individual thing. In my early years I got lucky and was relatively OK between flares. After my first son was born, though, it got non-stop although, for the last 11 years or so, methotrexate has got it well under control.

    It’s tough on parents. I do feel for you.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • simona123simona123 Posts: 2
    edited 30. Nov -1, 00:00
    I'm feel for you and your family as I know there are tough times ahead. I was 8 years old when i developed the random swollen knee symptom which came and went over the course of a year. Eventually the stiffness and pain came and I wouldn't be able to straighten my leg for at least an hour in the mornings. I was ten years old when I was eventually diagnosed with JRA and over the next few years it spread symmetrically throughout my body. The doctors at the time also advised me and my family that in most cases the condition will burn itself out and that more than likely the JRA would be in remission by the time I reached 16. I clung onto this and kept thinking that one day I would get better. I'm now 31 and the arthritis has a firm a hold as ever on my body. My advice to you is to see and treat the diagnosis as a long term battle from day one. The disappointment and despair that comes with the realisation that getting better was a false hope is crushing for a child. Sadly depending on the severity of the condition, it can spread throughout the entire body. I have it in all joints from my jaw to the balls of my feet. If the JRA is not controlled by meds, flare ups can be a constant battle. With the disease modifying drugs available nowadays, your little has a better chance of receiving the best care available that will hopefully limit any joint damage and keep flare ups under control.
    Three things I wish my family had known/done when I was diagnosed as a child are: pushed me to exercise and do my exercises to maintain all the movement in my joints. JRA makes you excruciatingly tired and I was left to rest most of the time. Sadly I lost most of my joint movement early on and have spent my adult life trying to get it back. Secondly, I missed a lot of school due to the same reason, I was always tired and couldn't dress myself and I would be left to rest hoping that the flare up would pass. No one at the time had come across a child with severe RA and I was treated by everyone as being ill, as if I had a cold and needed to stay in bed until it passed. I was wrapped in cotton wool and out of kindness no one pushed me to get back on my feet, to start moving my body and get strong again. I missed out on a lot of education but also my friends and social life. Thirdly, never tell your child to be brave. Children with JRA are brave, they have no choice. When you ask a child to be brave, it's putting a burden on their shoulders to make things easier for everyone else to handle the situation. This is an extra responsibility that a child struggling with pain and discomfort doesn't need. It's important that a child with JRA never feels that they have to censor their feelings and never has to put a brave face on things. Find out from your doctor all the possible treatments and services that are available to help you and your child. Research JRA and find out as much as you can and use this info to support your child's journey with JRA as much as possible. I wish you all the best and I hope that with all your love and help that your little boy lives a JRA symptom free life as possible.
  • dreamdaisydreamdaisy Posts: 31,553 ✭✭✭
    edited 30. Nov -1, 00:00
    Crikey. That is a sad tale, Simona, and I feel for you having had a rotten childhood (healthwise) myself. I think there are, however, one or two important differences betwen your story and the scary future you have hinted at for dansdad, namely you were eight (not four) and that was thirteen years ago (not now). I sincerely hope that the understanding and treatments have moved on since then - I know that they have in the time that I have been arthritic and also for the other great plague of my life, asthma. When I began that far too many years ago to mention they didn't have inhalers, all I was given was cough medicine.

    Listen to the docs, dansdad, and watch your little lad like a benign hawk. Learn the 'tells' that show things are not as good as they could be - over time you will learn how to react and to help him. He needs your love, your support but most importantly your understanding that you will both learn to cope. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dreamdaisydreamdaisy Posts: 31,553 ✭✭✭
    edited 30. Nov -1, 00:00
    Aaaah! I got my maths wrong - well, I was (and still am) tired. :oops: I meant twenty-three years ago. Have you thought about posting on the Living with Arthritis part of the forum, Simona? More people will answer you there and offer you support. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • simona123simona123 Posts: 2
    edited 30. Nov -1, 00:00
    Dream Daisy, you must have missed the bit where I say that with the disease modifying drugs available nowadays your little one stands a better chance of receiving the best care available that will hopefully limit any joint damage and keep flare ups under control.

    As other parents with children suffering with JRA may read this thread, please be aware that I am not predicting a scary future, I am simply advising that it is a good idea to be as prepared and informed about the condition as much as possible AND the effects that it can have in the long term. Be proactive not reactive.

    From a personal point of view, I was saying that to have JRA and to be wrapped in cotton wool can have an adverse effect in ways that you can't see at the time. Being a parent myself, I know that this is the most natural reaction in the world to want to protect your child and take away any pain. But in the case of JRA, a child will have to keep moving a joint even though it hurts and then it is down to the parent to be brave and reassure their child that even though it hurts now the exercise will help make it less painful the next day.

    Whether I was 8, 9, 12 years old, I was still a child and therefore have experienced JRA first hand. I find your tone quite patronising especially since your only similar experience is developing arthritis as an adult. Unfortunately arthritis is a debilitating condition and I for one take it seriously especially when it comes to JRA.

    I have lived with and managed severe RA for 23 years and without giving away my entire life story, I've managed my condition very successfully. Thank you.
  • stickywicketstickywicket Posts: 25,867
    edited 30. Nov -1, 00:00
    Hello Simona123 and welcome to the forum. Yes, I too remember being told that (a) it often burnt itself out (though no time schedule was ever given) and (b) a cure was ‘just around the corner’. I’ve been round many corners in my 51 years of RA (Stills Disease to be precise) but obviously not the right one :roll:

    I find, on these forums, that we tread a fine balance between giving false hope and removing ALL hope. I don’t, personally, regret having been told these things. It did leave me with hope and, although neither has happened – though my RA is currently nowhere near as bad as it once was - I think the hope was good and helpful. I guess we all react differently and it's a personal thing.

    Mine, too, has spread everywhere because DMARDS weren’t around when I was first diagnosed and I heartily agree with you that getting on the right meds asap is a no-brainer. I also agree that exercise is vital. I got lucky in that, while at school and uni, I had periods when I was only limited by damage already done. My family, too, tried to make me rest but I was always a disobedient child :oops:

    Unfortunately, I have seen, on these forums, that parents do sometimes have to encourage their children to be brave. The battle and worry of getting injections into them must be heart-breaking. What are they supposed to do? Tell them they need not be brave? Forego the jabs? It’s so tough for them and Dreamdaisy, one of the most supportive people on here, is aware of that. You need only read her posts. As for taking it seriously – well, again, read her posts on here and LWA. There are few who take it as seriously and spend as much time trying to help others as she does. I, for one, am indebted to her for her support. I have never found her patronising.

    I hope you will join us on the other forums, Simona123. Living With Arthritis and Chit Chat are the most popular. You obviously have a lot of experience of arthritis and that is very valuable on here. I hope to see you around.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • LozzyLozzy Posts: 46
    edited 30. Nov -1, 00:00
    dansdad wrote:
    Hi,

    My boys left knee had suffered 3 big swelling events in the last 8 months that has left him hobbling for 2 weeks at a time. Today we saw a consultant who has assessed it as almost certainly arthritis and referred him for a MRI and taken blood tests. A few things were said but we were that shocked it all seems a bit of a blur. A few questions I have if anyone can help...

    a) The problem seems local to the left knee. All other joints seemed ok. How does arthritis work? Is it possible that only this joint can be effected.

    b) Does it ever just go away? I have read it's incurable but I note another website said that 50% of kids have it for longer than 10 years and only 33% take it into adulthood. The consultant seemed positive and said in most cases its treatable. Dose this mean 1 steroid jab, steroids for ever more, physio?

    c) Does it manifest itself in day to day life or is it just at times of flare up?

    I was surprised it was arthritis. It's not worse in the mornings and although the swelling and limping is bad when it flares up he rarely complains of pain. Gutted for the poor little mite, he's had it rough so far, aside from the arthritis.

    Many thanks

    Hi Dansdad my two year old was diagnosed with arthritis at the beginning of October. She had it in her left leg like your son and had a steroid injection 4 weeks ago. The problem with arthritis is its unpredictable, your son may only get it in one joint or it may spread, its a case of wait and see. Same with treatment, some children only need 1 steroid jab and that sends them into remission permanently, others only get a flare up every few years and others the steroids only last a few months before it returns.

    I hope your son gets treatment quickly.

    Laura
  • MumVMumV Posts: 71
    edited 30. Nov -1, 00:00
    Hi Dans Dad and Laura,

    Sorry to hear about your children's knees. It is devastating and scary to be told your healthy child has got Arthritis. I hope the injections have given relief.

    Point C. Does it manifest itself in day to day life between flare ups, if the disease is in remission, or being controlled by drugs, there can sometimes be a general feeling of being unwell, but with no particular symptoms.

    My daughter diagnosis is JIA, which is the umbrella over different types manifesting in different children, my daughters is poly articular, where the flare ups mirror opposite joints, hopefully this is not the case for your son.

    The main thing is to understand that flares/swellings are not good and need to be treated ASAP to prevent damage to joints. Treat it, get it under control, as Simone and the other Ladies have shared, better than I can (thank you to them), then look at your son and not the disease. Do all the things you would normally do, if you can't, do something else.

    I was advised not to do too much on joints while swollen to avoid damage, but yes as Simone says, when joints are good exercise and play as normal. For wellness My daughter would prescribe, keep busy, laugh, surround yourself with friends and be happy.

    Good Luck keep posted of how he gets on and Laura. kind regards.
Sign In or Register to comment.