Plan of action
We had a whole load of pamphlets to read through, and family to tell. I think that had to be the worst phone call to my mum. Saying it out loud made it real and I knew my parents would be upset about it too. They, of course, were great though as were most of our families and have offered some much needed support.
The immediate plan of action was as follows:
1. To get her referred to an opthalmolgist to rule out uveitis (inflammation of the eyes)
2. To be referred to physiotherapist
3. Blood investigations to check whether C is immune to chicken pox and if not to have a vaccine for this. She would also need the pre-school booster for MMR early as it was likely that she would need to start methotrexate.
4. C would need intra articular joint injections or oral steroids befor starting methotrexate (methotrexate is a disease-modifying anti-rheumatic drug DMARD)
5. Prescription for naproxen twice daily (NSAID – Non-steroidal anti-inflammatory drugs)
As C was not immune to chicken pox she had to have the vaccine for this and also have the MMR booster.
We had to decide whether we wanted C to start on methotrexate. It didn’t actually take us too long to think about, if it was going to help her be mobile and active like any other toddler then we would go with it. Also, the consultants had pretty much convinced us that this was what we had to do. However, the possible list of side effects made me anxious but to get C mobile again was our main concern at this time.
We started C on naproxen as soon as we could which seemed to have really good results, with C doing more walking.
At the beginning of September C started her weekly jab of methotrexate. Fortunately there were no side effects to start with. We went to our local hospital for the jab where the nurses made a big fuss of C and tried to make the injection as “enjoyable” as possible with lots of stickers and cuddles. Now I can’t even remember her first jab. I’m sure there were a few tears but no big dramas.
We kept on with the naproxen and the weekly jab. During this time, C’s temper was not so pleasant. The tantrums were quite frequent and her sharing ability was terrible, with nasty consequences for the other toddlers! At this point, we decided it would be beneficial for her (and me) if she started nursery. We kept reading that it was very important to keep children with JIA social and engaged with others of their age and to keep them active. Therefore, we also started weekly swimming lessons with both C and B.
In the beginning of October C was booked in at the Evelina at St Thomas’ for steroid injections into her right elbow, left knee, right ankle and subtalar. It was a tiring day. We had to get up early to get to the hospital for 7am. B came as well as I was still breastfeeding a lot. She also had her 6th methotrexate jab whilst she was under general anaesthetic.
Just trying to put her hospital gown on was distressing as she seemed to know something was going to happen and started getting upset. I had to bite my lip to not cry and get her dressed. Again, I went down with her and she sat on me while they put the mask on her. The time went quite quickly and I could go get her after a fairly short time. C was awake when I went to collect her but had been crying for me (she was on only 2 1/2 at this time). She was a lot happier this time (after we’d had a cuddle) and was happy to eat all the croissants and other favourite foods I had brought for her. We were glad to go home and see how she would get on after this.
The following day we stayed at home as she was a little tired from the general anaesthetic but she was moving around well. It seemed that the steroid injections were doing their job.
C continued to become more mobile and at her next rheumatology appointment in November the consultant said she had no active arthritis. Amazing news! All in all she was doing really well joint wise.
The only thing that was bothering me was that her appetite was not so great and she hadn’t put any weight on since she was 2. Therefore, we mentioned this (and the fact she’d had a mouth ulcer) and they put her onto folic acid. This seemed to help a little with her appetite but not greatly. At her next appointment in February 2015 we again said how her appetite wasn’t great and they upped the folic acid and her appetite is now back up. Some days she nearly eats us out of home and her weight has been steadily increasing, she’s even gone up a shoe size. Hooray!
C has to have regular eye checks for uveitis but so far these have not shown anything and hopefully this will continue.
We decided to take C off the naproxen as there was no active arthritis and to use it only if she has a flare.
We did have a physiotherapy session which also stated that C has hypermobility where her joints extend further than they should. (Although her consultant also said a high proportion of children her age do). C also had a hydrotherapy session although this didn’t happen until January 2015 when her joints were under control, but we have been told we can just call them to try and get a session if she has a flare at some point in the future.
If C still has no active arthritis when we have our next consultant appointment we can look at reducing the dose of methotrexate she is on. There are a few months to go yet but fingers crossed she will still be arthritis free.