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adamlilyrosie
adamlilyrosie Member Posts: 5
edited 1. Oct 2014, 08:25 in My child has arthritis
Hi everyone, feeling a bit nervous because I have never done anything like this before but I am also feeling completely helpless. My 3 yr old daughter has been suffering probably since the age of about 18 months but I like to rationalise and thought it was growing pains etc. We have now had a preliminary diagnosis of acute juvenile rheumatoid arthritis and are due to see the rheumatologist on the 9th Sept. I feel like a bit of a fraud because she mainly suffers from pains at night, other than maybe a fever, sometimes a rash and clumsiness she is ok during the day. After a bad night last night (think she rested for about 2 hours!) I am desperate! Does this sound 'typical'? What are your experiences?

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. Rest assured you are not a fraud, just a worried mum who is now on the right path to getting her daughter the help she needs - and she does need help.

    Far too many people associate any form of arthritis with the elderly but that is completely erroneous. Maybe a read through some of the other threads on here may reassure you that you are not alone with facing this, we know of children of all ages who are affected with this but, as parents are often busy people, it can be on the quiet side on here. It may be worth now starting a diary (brief entries only) of when and how your little one is affected, the location of pain and its intensity, levels of tiredness (an auto-immune arthritis can make one feel very tired) her general energy levels etc. because that will help the rheumatologist gain a bigger picture of your lovely girl and in how she is being affected. Feel free to ask any questions, I will do my best to answer them despite my not being a parent, just a practising arthritic. :wink: I wish you both well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,325
    edited 30. Nov -1, 00:00
    Hello adamlilyrosie and welcome from me too.

    I dislike the term 'growing pains'. I know it exists but, certainly, when I was young, and even less was known about childhood arthritis that now, my initial symptoms were dismissed as growing pains. That was when I was eleven and getting all the symptoms that DD has described. Later, when I was actually diagnosed at fifteen, it was decided retrospectively that my 'growing pains' had probably been rheumatic fever and / or the start of my arthritis. So please, please don't ' feel like a bit of a fraud'. Your daughter needs a proper diagnosis and, thankfully, she will get one soon and, assuming it is arthritis, be started on the right medication for it.

    Our parents are busy people, as you'll know, which is why some of us who are not parents of children with arthritis (Thankfully, both my sons and grandsons are fine) come on here. I hope some other parents will see this and answer your post but, as DD says, you can always look through for yourself and read of others' experiences. It sounds quite typical to me though.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • adamlilyrosie
    adamlilyrosie Member Posts: 5
    edited 30. Nov -1, 00:00
    Thank you both for taking the time to reply, I think deep down the more I read and the more drs we see it seems that there really isn't going to be another diagnosis. It's nice to finally talk to people who understand because a common response I get when even talking to close friends and family is 'she looks ok to me' but come night time she is literally rolling around for hours in agony. I am just off to see the gp now because the 9th feels like a long way off and I am hoping they will give her something to help with the pain as the calpol and ibuprofen don't even take the edge off. Thanks again. Jo x
  • stickywicket
    stickywicket Member Posts: 26,325
    edited 30. Nov -1, 00:00
    I hope the doc could help. It's a worrying and frightening time. When it's your child you just want to make it all better, don't you?

    I expect friends and relatives are trying to be helpful and optimistic, especially as many have probably never heard of children getting arthritis. The latest issue of Arthritis Care's Inspire magazine has an article on Ways to Help a Child With Arthritis. You might find it helpful.http://www.inspirearthritiscare.org.uk/
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. This is one of the troubles with any form of arthritis, we can look fine (even fit and healthy) but we're not due to pain, stiffness and tiredness. Are you seeing a rheumatologist on the 9th? DD
    Have you got the despatches? No, I always walk like this. Eddie Braben