My 22 month old has Arthritis.

Lozzy
Lozzy Member Posts: 46
edited 10. Jun 2013, 16:30 in My Child Has Arthritis
Hi every one, newbie here.

We were told my 22 month old daughter probably has arthritis in at least one knee last week, she has been referred to the specialist but thats all we have been told. Iv tried googleing but most things i can find talk about older children. Im just feeling pretty lost at the moment so if any one could point me in the direction of anything that would be a great help. Her sleep and apatite has been affected and im really struggling on how to help apart from giving her pain killers.

Comments

  • 7worlds
    7worlds Member Posts: 302
    edited 30. Nov -1, 00:00
    Hey Lozzy. Am sorry you have had to find us, but welcome.I,m unable to help but there are a lot of people who use the forum and im sure someone will be along who will be able to give you some help and advice. What we can all do here is give you support and an ear to offload on.Have you tried ringing the AC advice line?I am sure they have experience of what you are dealing with. Do keep posting and let us know how you and your little girl are doing.Take care.

    7Worlds
  • stickywicket
    stickywicket Member Posts: 26,253
    edited 30. Nov -1, 00:00
    As a mother and grandmother, I can imagine how devastating this news must be, Lozzy. And waiting for a proper diagnosis is probably one of the hardest parts.

    I do hope her appointment will come through quickly. We are not docs and can't advise on medication, especially for such a young child. If you're not happy with what she's taking I suggest you go back to your GP and ask if there is anything else that could be prescribed. Once she sees the rheumatologist I'm sure she'll be started on a course of treatment very quickly.

    In the meantime you might find some of AC's publications on children and arthritis helpful. http://www.arthritiscare.org.uk/PublicationsandResources/Youngpeopleandfamilies As 7worlds suggested, a chat with the Helpline might be useful too. And we are always here to sympathise and empathise. I hope another parent will be along soon.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Lozzy
    Lozzy Member Posts: 46
    edited 30. Nov -1, 00:00
    Thanks for replying, My GP is now away for a week so im kinda stuck untill then. I think il ask her health visitor and see if she has any information.
  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    Hi Lozzy,
    I hope I can offer some support from my vast experience!! (Though wish I couldn't!!)
    My daughter was diagnosed with JIA at 2, though she had had a previous joint flare aged 15 months but the jury's still out on that one. She is now 6 and has had 12 joints injected over the last four years with good effect, but of late has been on Methotrexate and Humira for anterior uveitis which is associated with the JIA.
    This will all be explained to you when you see the specialist as your daughter may need to be screened for this depending on the sub-type diagnosed.
    It's early days for you and this journey will be taken step by step. I'll be happy to step through it with you and try to answer any questions you have. Just ask.
    Let me know how you get on and i hope others will be along to support you soon.
    Thinking of you
    Sam.
  • Lozzy
    Lozzy Member Posts: 46
    edited 30. Nov -1, 00:00
    Thanks for the reply, there has been a cancellation so we have an appointment with the specialist next Thursday. I think a lot of the questions i have cannot be answered and im going to have to take a wait and see approach.Im not the most patient of people and like to know things now so im going to have to learn how to switch that part of me off.

    Can i ask how it has affected your daughter in her day to day life? Is there certain areas she struggles with more than others?
  • worriedmum
    worriedmum Member Posts: 79
    edited 30. Nov -1, 00:00
    Hi Lozzy,
    Hope things are going ok.
    So you asked how Freya is affected day to day and actually that is the really tricky part about this disease - because it changes so often.
    At present, because of all the meds she is on(which thankfully are working well) you wouldn't know there was anthing wrong. When she has a joint flare, she is generally a bit down, uses her body differently to do things ( for example, walks down the stairs without stressing her sore ankle, finds writing stamina reduced at school when wrists are sore) but actually, copes bloody brilliantly!! Kids adapt as soon as you can blink and will find ways of doing things which reduces discomfort. It''s only when you observe them playing with the insight of a physio that you realise they are compensating. It's incredible.
    So, much of the time, things are normal, hen when things are bad, you find ways to cope - hot water bottles, meds, cold packs, massage and relaxation techniques etc.
    Most people dont know there is anything wrong with Freya most of the time, unless they see her early in the morning when she is stiff, (baths /playing in the bath help) so you kind of learn to live with it and let it live with you.
    The hospital appointments are exhausting, the meds are trying sometimes and everynow and then it overwhelms you completely but then you pick yourself up and go with it. Let's face it, theres no other option.
    Anyway, i'm waffling - good luck at the appointment and please let me know how it goes.
    Keep in touch
    Sam.
  • OZange
    OZange Member Posts: 8
    edited 30. Nov -1, 00:00
    Hi Lozzy,

    Just wanted to tell you that I exactly know how you are feeling and suggest you distract yourself with fun things (if you can) untill you see the doctors. I know it is hard, but you need a diagnosis before you can do anything. There are so many forms of arthritis and each is treated differently.

    I was in the same situation a year ago. My son (nearly 2 at that time and now 3) was diagnosed with Oligoarticular Arthritis in his left ankle (JIA - basically the kids version of arthritis) and I had no idea what it meant as a disease and for his and our life. Since then our family had a very steep learning curve. We now know so much more about arthritis and are continuously learning how to deal with the different medications and what complementay medication we can try.

    My son is managing it brilliantly. Although more joints are affected now he rarely complaints about pain and is running and jumping around just like any other 3 year old. If you didn't know he had JIA you wouldn't be able to tell. Of course that has a lot to do with his medication and as much as we don't want him to take drugs we are so grateful for them - they make his day to day life so much easier. And we still belief that he will grow out of JIA anyway.

    Feel free to ask any questions you have. I will answer if I can. If I can't answer them it might just be helpful talking about it. That is what helps me a lot.

    Wish you all the best and good luck with your appointments!!!
  • Lozzy
    Lozzy Member Posts: 46
    edited 30. Nov -1, 00:00
    Thanks every one, this was an old post that got bumped up. Niamh had a steroid injection in her knee in october and has been clear since.
  • Bethliz
    Bethliz Member Posts: 44
    edited 30. Nov -1, 00:00
    Hi.Can I join you? My little girl was recently diagnosed with arthritus in her left knee. She is 22 months old.She was given a steroid injection which made a massive improvement but the doctors are still concerned. They are recommending methatrixate (hope ive spelled that right) I am very anxious about this as I am very worried about the side effects on such a young child. I would be very grateful if anyone with a child of a similar age has experience of a child taking this drug could get in touch and share their experiences.

    Many thanks
    Bethliz
  • Lozzy
    Lozzy Member Posts: 46
    edited 30. Nov -1, 00:00
    Bethliz wrote:
    Hi.Can I join you? My little girl was recently diagnosed with arthritus in her left knee. She is 22 months old.She was given a steroid injection which made a massive improvement but the doctors are still concerned. They are recommending methatrixate (hope ive spelled that right) I am very anxious about this as I am very worried about the side effects on such a young child. I would be very grateful if anyone with a child of a similar age has experience of a child taking this drug could get in touch and share their experiences.

    Many thanks
    Bethliz

    Hi, iv replied to your PM. I have no experiance of methotrexate but im sure some one else will be able to answer your question.
  • Pegsboard
    Pegsboard Member Posts: 29
    edited 30. Nov -1, 00:00
    Hi.
    My little girl was diagnosed last year (feb) when she was 2 and we started on methotrexate in the July. She had steroid injections twice which worked wonders but metho has been a wonder drug!!! It is scary to think your giving your child such a strong drug and I still hate it even tho I can see how it's made her life so much better. She is sick every time she has it (and refuses to take the anti sickness medicine!) and it takes her ages to get over any bug but I would still put her on it knowing what I do now. If you need to ask anything just go ahead. I may not be able to answer but we could muddle through together!!
    Zoe