Introducing Rebecca, her Family and JIA

In this post, Rebecca shares the story of her daughter, who has juvenile idiopathic arthritis (JIA). I learned a lot from this post, and I hope you will learn something too.

 

When my daughter first received a diagnosis of juvenile idiopathic arthritis (JIA) I wrote a piece on our own blog entitled ‘Even 2 year olds can get arthritis’ (http://thebeesleybuzz.blogspot.co.uk/2015/03/even-2-year-olds-can-get-arthritis.html)
You see, even though I suffered from arthritis as a child (mine started at age 10) I still found myself shocked and surprised that my daughter at such a young age of 2 could possibly have arthritis.
When people asked me why I used crutches and I told them I had arthritis, I hated the usual response I would get from them. Usually something along the lines of ‘my granny/grandad / elderly neighbour has that’.
It was (and still is) considered to be an old persons disease and yet arthritis can affect people of any age.
My daughter was lucky. The doctors recognised that it could be JIA and within 3 months she had been referred to the experts at Great Ormond Street and received a formal diagnosis. For many diagnosis takes a lot longer. In my own case it was over a year. During this time the body is attacking itself (rheumatoid arthritis is an autoimmune disorder) and the affected joint(s) are becoming permanently damaged.
Between January and March of last year, my daughter, Miss T, was in a huge amount of pain. She had multiple swollen joints. She was unable to walk and would crawl or shuffle around the house. She was prescribed high dose pain killers which enabled her to begin to walk again.
After her formal diagnosis from Great Ormond Street she Began on methotrexate treatment – a disease modifying anti-rheumatic drug (also used in chemotherapy) that can help prevent the arthritis from causing joint damage and reduce the inflammation and pain.
9 months on and most of the affected joints are looking normal. It is just the left foot which was the worst affected that still has some swelling and can be very painful.
As a result Miss T uses a wheelchair on an occasional basis (for example she cannot walk long distances)
The plan is that with ongoing physio and continuation of the methotrexate injections that she will be pain-free enough to manage without it. But for now we’ve had to experience the steep learning curve that comes with finding your child needing a wheelchair.
When faced with sympathetic stares or those who say how awful it is that she needs weekly injections of methotrexate with all the side effects that can go with it…I just want to tell them that we actually have so much to be thankful for….
That the pain is getting under control
That there are drugs that prevent the joint damage (something that wasn’t available to me as a youngster)
That there is very little that Miss T misses out on. Whilst we’ve had to make some changes to plans, on the whole we encourage her to join in with as much as she can.
That we’ve found a wheelchair that meets her needs and our needs (it took several adjustments to get it right so that it was the right fit for her as well as being comfortable enough for me to me able to push given my own arthritis but we got there in the end)
That her doctors were aware of JIA and made a speedy referral to the rheumatologist.
That she is under the care of world experts in JIA and they are hopeful of a bright future for her.
I would be happy to hear from anyone else who has a young child with arthritis. Whether you just starting out on the journey with a new JIA diagnosis or whether you are some way down the road with treatment. I can be found on twitter at @TheBeesleyBuzz on facebook at facebook.com/thebeesleybuzz and our family blog is http://thebeesleybuzz.blogspot.co.uk

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4 thoughts on “Introducing Rebecca, her Family and JIA

  1. Really good post raising awareness of an important issue and in a real and personal way. The only thing that Rebecca does not mention is how lucky her daughter is to have her as a mum and the wider family of course. Number 1 – for taking her for medical help in the first place and by battling for the best for her. Keep speaking out Rebecca – you help others every time you do and keep seeking support too – don’t just be the one who gives. Reach out for what you need too and here’s to the amazing work of GOSH.

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  2. Whilst I’d love for your little girl not to have this Rebecca, I have been really interested to read her story and so glad that it was recognised and treated quickly by your docs. Mich x

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    1. thanks Mich. Yes she was one of the lucky ones for diagnosis and treatment to happen so quickly – even though it is a long journey possibly with many years of treatment. It saddens me to hear of cases where doctors have not considered the possibility of JIA and so have not referred to specialists until the joint damage is done. x

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