Dee & Callum’s story
He ended up in hospital aged only 17 months with a swollen knee – he’d not been walking long and I thought he’d just twisted it playing in the garden. Within two months we were given a diagnosis of what was then called “Pauciarticular juvenile rheumatoid arthritis,” though even then they were changing the terminology. We found the pace at which things change in JIA pretty rapid over the coming months and years.
Soon, other joints joined in and the diagnosis quickly became “Extended oligoarticular juvenile idiopathic arthritis” after other joints became affected. Even in that short space of time there were big changes in Rheumatology. I had known someone who’d had juvenile arthritis and he was fine, so it would all be ok. I wasn’t scared; this would just be a minor problem.
It wasn’t long before the raft of blood tests told us he was ANA+. Obviously we had no idea what that meant, it was just more jargon dished out that left us nodding in agreement, feigning understanding and trying to remember the weird words to take home and Google. Endless journeys to this place and that, for this test and that, to see one person then another – it was quite a whirlwind – was something we just did, coped with, managed…call it whatever, but when your child is dished this kind of dirt, you just do what has to be done whether you like it or not and hope the people who do these things to your child know what they’re doing.
After taking chemo successfully for 4 ¾ years, I asked if the time had arrived to stop it. Methotrexate is not nice, but it works for Callum and the side effects are by far worse than the disease. With a spring in our steps, we set off into a future with no needles, no puking and no more weekly extortionate hospital parking charges. Life was looking good. I shrugged off the caveat that we might expect to see some symptoms returning after about 3 months or so (remember – it takes 12 weeks to clear methotrexate from the system!) but there was that wicked little word; might.
The ‘quick check-up’ at the Hospital only six weeks after the last chemo jab had the ophthalmologist telling us that Callum had eye disease. She asked if I knew if he was ANA positive (“Erm, yeah, I think so…”) She dashed out of the room and returned after what seemed like an age, presented me with a prescription and warned me not to stop the drops. There was a sheet of paper with a timetable (What dose, what time, over the following six weeks it had to be reduced to this, then this, then this…)
It all seemed unfeasibly complicated for something nobody had noticed and you couldn’t even tell there was something wrong, so it all felt a bit over the top. After all, when you’ve seen how big and red a toddler’s knee can get, why would he not have a sore eye? He was an exceptional reader, a real bookworm, there was no sign the eye had bothered him – he hadn’t even been rubbing it. Of course, I’d heard of uveitis, but it was something about which I knew nothing. I did pick up signals from the ophthalmologist though that it was something very serious. With absolutely no other information, we packed ourselves into the car and made our return journey.
Getting back home I made straight for Google, which has become almost like a good friend to us over the years, although it can also be a very fickle friend – sometimes giving slightly dodgy, even dangerous, information and advice. I found there was barely any uveitis information on the net that I could both understand without the need for a medical dictionary; it was really worrying. That said Google Images quickly became a comrade in arms as the battle to get drops into Callum’s eye commenced.
Whether you think me cruel is irrelevant – I used shocking pictures of diseased eyes to show my son what would happen if he refused to have the drops. I couldn’t bear the thought of seeing my child go slowly blind. Finding the side-effects of the drops are pretty much the same as the effects of the disease was a very nasty shock and all I could do was hope for the best. Luckily (or not) the joints started to swell up again and the medics had no choice but to reinstate the methotrexate which also helped. A couple of months later we were given the all clear for the eye. Phew!
Over the following years, the methotrexate was stopped and restarted twice more. Callum’s consultant told me that as there’d been no more sign of the uveitis, and considering my son’s age, it would be a good time to think about not having to have the eye checks at the hospital any more. I did say I wasn’t happy about doing that as he’s ANA positive and didn’t want to take the risk. I could tell the consultant wasn’t happy about my insistence on staying on his list.
I’m really glad I stuck to my guns because in 2010, only months after the conversation and with another cessation of the methotrexate the uveitis returned as “The merest hint of disease” which, to my dismay and deep concern, was left untreated. A follow up appointment showed no change but as it was only “The merest hint of disease” the consultant decided to leave the chemo to do its stuff. I know of only two other children who have had uveitis and they (and their families) are both suffering unnecessarily as a result. Luckily the drugs worked.
Having found over the years that there is very little information for parents of children suffering from uveitis it came as an immense relief to ‘meet’ Olivia and Nicki online. I’m so pleased they’ve launched Olivia’s Vision and, although I wish it’d been there years ago, it’s great it’s here now. I’m sure it will help any and all families touched by uveitis and JIA.
Good luck x