When Charley was first diagnosed with JIA (juvenile idiopathic arthritis) we did lots of research, on the Internet, reading pamphlets etc. and one of the terms that kept coming up was “it’s a Rollercoaster ride”.
I think for us, so far, we’ve been pretty lucky. The weekly injection of methotrexate seems to have kept the arthritis under control and she’s not suffered too many nasty side effects. She also copes really well with the weekly injection and two monthly blood tests.
Charley’s been arthritis free since November last year and if this remains until November this year we can start reducing the dosage until, I guess, she’s off it completely. This would, of course, be fantastic. Especially if she was off it before she started school.
At the moment a community nurse comes on a Friday to do the jab. When I was breastfeeding I wasn’t “allowed” to do the jab incase I accidentally injected myself but now I don’t have this as an excuse. I’m sure the time will come for me to do it in the future. Charley is fine with a nurse doing it, but me, her mummy? Plenty of mums and dads do, but I really don’t want to do it. I would, but I want to be the one to comfort her, not inject her.
After routine blood tests yesterday the senior nurse phoned up first thing asking if we’d already had the injection done today, “yes, we have”, as her white blood count (wbc) and neutrophils are a bit low, although nothing to worry about. Ok, nothing to worry about. But you do, just a bit at the back of your mind, it doesn’t go away. All the times in the last few weeks when she’s complained that her tummy aches, when she’s been lethargic on a Saturday morning, when she’s waking up distressed in the night. Suddenly I’m feeling terrible that maybe she’s been feeling a bit rotten and I’ve not picked up on it enough.
The nurse said it could be due to a pre or post viral coming or going. Ok, so she’s had a cough in the morning, is that part of a virus or is she going to get poorly? Should we avoid other children that are poorly so she doesn’t pick anything up? But you can’t wrap them up in cotton wool, and I go stir crazy being in the house. Since the diagnosis we’ve always had the attitude to get on and do things, for her to have as normal a life as possible. In fact she’s probably done more due to the arthritis to keep her active and social than if she didn’t have it. Social interaction was another area that we read as being important.
The nurse tells us not to have the injection for the next two weeks to see if this helps getting the wbc back to normal. Ok, yay good, no nasty jab in the leg for Charley, no having to get back in time, get up on time for the nurse. Oh no, hang on. No injection, no methotrexate put in the body that helps control the arthritis. Will this bring on a flare just when we are so close to being a year arthritis free? Hopefully not, she doesn’t show any signs of it at all at the moment, but then she didn’t before she started limping. No, I’m sure she’ll be fine. Just me being a normal slightly paranoid mum.
When you are pregnant all you want is for your baby to be born healthy. When they’re born you just want them to be healthy, happy and safe, and this never goes away. So even though the nurse says its nothing to worry about, you do.
Of course in lots of ways we are very lucky, I know that there is a lot worse we could be dealing with. She’s happy (mostly!!), healthy (with the help of the drugs) and we do our best to keep her safe.
Hopefully, this is just a little blip, her wbc will go back to normal and she can continue with the weekly injection for now.