> The Beesley Buzz: Living with JIA - 18 months on

Living with JIA - 18 months on


It was 18 months ago that we heard the shocking news that Miss T had juvenile arthritis. Although it caught us by surprise we've felt better prepared than most because of my own experience of childhood arthritis.

Still it has been largely unknown territory for us because when I was first diagnosed with arthritis a whopping 28 years ago when I was aged 10, I wasn't offered any of the treatment options that are available nowadays.

We've tried to view things positively throughout. We've told ourselves that although compared to a 'normal' child, she's had a pretty rough time, she is so fortunate that with the Methotrexate treatment she is on, she is largely able to lead a normal life despite the side-effects.

We had been so pleased with the progress she was making. Since the end of last year she has been doing around half an hour of physio excercises every evening at bedtime. For a child so young, I find it incredible how well she cooperates and knows she has to do them, never complaining.

The weekly injections are harder as she knows they're painful and so these days she cries and pleads with us not to. But we have to. In the early days she showed such bravery and would calmy await her injection each week but a year and a half on with no end in sight she's clearly fed up of having to go through that each week.

The blood tests to monitor liver side effects are currently down to one every 8 weeks so that is good. But those 8 weeks seem to come round pretty quickly as we cover her hands and arms with EMLA cream and cling film and head to the hospital.

Her eye checks are currently down to every few months too as the methotrexate has kept the uveitis at bay. Anyone reading this whose child has been diagnosed with JIA, please please get them referred to get their eyes checked urgently for Uveitis. Miss T had initially gone onto the long routine appointment waiting list for this at our local hospital and it was only because her Great Ormond Street consultant told us how urgent it was that I phoned several times a day every day and got her seen urgently. Any longer and her sight could have been affected. Uveitis is one of the leading causes of blindness.

So 18 months on and things seemed to be going well. The methotrexate had got the pain under control. The physio exercises were strengthening her muscles. She'd managed to avoid Chicken pox (can cause complications for children on methotrexate).

When we saw her Great Ormond Street consultant a couple of weeks ago, we'd really hoped that there was an end in sight. But instead her left foot was showing signs of swelling again. Nowhere near as bad as the initial swelling I wrote about here, but swelling nonetheless.

So another MRI - this time it will be in London and under general anaesthetic rather than sedation. These are the times we have to be braver than her. I remember all the mixed emotions running through me for her last MRI and the last general she had for a steroid injection.

Again we have uncertainty. And no end in sight. But that seems to be the nature of arthritis in my experience. Unpredictable. Ongoing.

But I know my brave girl and I know she'll keep smiling.


11 comments:

  1. I too have had arthritis for 30 years, although older than you & I was 20 when I developed it. I absolutely agree with your comment about arthritis being unpredictable, and I've found it acts differently in every person. My son was tested at age three due to an issue with his hip, he was clear then and is 16 now but I do wonder about the future. Treatment has come a long way in the last 30 years.

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    1. sorry to hear about your arthritis and what a relief about your son. What has most surprised me with Miss T going through it is finding out that even amongst the medical profession there is still little awareness of children getting arthritis - I keep hearing of cases where GP's haven't made referrals until late on because they've assumed it is something other than arthritis and I hope this will change in future because early diagnosis is SO important. x

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  2. OH bless her, it must be so hard. I know at first it seems novelty that you're getting all the attention, but after 18 months I can imagine she's pretty fed up of it all. It sound like it's all up and down with good news about finding a good treatment and getting her eyes sorted in time, but bad news about her foot swelling again and no end in sight. I think of Miss T. often and keep her in my prayers. xx

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    1. Thank you Anne. We think of you also with everything you are going through. Pain and illness is just such a horrible thing whatever it is caused by and at times it is difficult to keep spirits up. We really are thankful that so much of what has happened in T's case has worked out well and treatment has worked etc. I guess i'd just hoped the days of MRI's were over. x

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  3. Oh Rebecca, my heart goes out to you to have to give your little girl an injection, knowing it hurts her, watching her plead not to have it - you're amazing how you keep it all together.

    As for Miss T - what a star! She truly is a credit to you xx

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    1. Thanks Rachael. She is a real superstar. x

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  4. She's so brave and smiley in that photo, but it must be heart-breaking for you, whenever she is in pain. We've finally got the methotrexate stage behind us as son1 finished his chemo last month. Luckily his was oral rather than injections. Although intravenous in the earlier stages

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    1. it has made me hate fridays as that is her injecton day and she now worries about it all week asking each day if it is injection day. I just wish there was an end in sight so that we could say in X months there'll be no more injections. Thankfully it is working and helping so much with the pain that we just explain to her that it has to be done. So glad about yours son's chemo coming to an end. x

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    2. Thank you. Still got a multitude of appointments, but at least the worst is over for us

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  5. Ah she is so brave, its incredible how kids cope isn't it? Jack was 10 when he was diagnosed with type 1 diabetes and was the same just got on with it and never moaned, we have brave children that we can be so proud of x

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    1. yes they really do surprise us all the time with just how accepting and adaptable they can be at times and showing true strength. x

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