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.