Update on Charley’s Juvenile Arthritis – January 2016

Update on Charley's Juvenile Arthritis

The last few months have been a bit up and down regarding Charley’s juvenile arthritis. Only a few months ago we thought we were starting the journey of ending her medication whereas now it looks like she will be on it for a good while unfortunately.

Update on Charley's Juvenile Arthritis

Appointment with the paediatric consultant – October 2015

The consultant was happy with Charley’s progress and told us they were happy to reduce her methotrexate dose down to 7.5mg when our supply of 10mg ran out. We only have 4 weeks at a time so we wouldn’t have to wait too long, in fact we would be able to go down to the new dose on 6th November.

We were told Charley would need more regular eye checks for uveitis and that she would be seen in the February 2016 joint paediatric rheumatology clinic.

This was exciting news, thinking that as long as all was well with Charley’s joints maybe we would be talking about coming off the methotrexate completely at the next clinic.

New lower dose of methotrexate 6th November 2015

We had the new batch of methotrexate at the lower dose all ready to be started.

First dose done.

Now every little ache, pain is scrutinised to check its not a sign of a flare, not that the lower dose would affect Charley that quickly.

Ophthalmology appointment 13th November 2015

All Charleys previous eye appointments had always been fine and when I went along with just the children to this I wasn’t expecting any different outcome. I was just expecting him to say all looks fine, but we’ll book you in sooner due to the lower dose of methotrexate.

This wasn’t the case and as soon as he looked in her right eye he said that there was activity there. It was a bit of a shock to be honest. Charley hadn’t had any redness, itching or pain that we had noticed so I just wasn’t expecting it. It was at this point that I wished my husband had come with us so someone was taking in what the ophthalmologist was saying, everything seemed to be going over my head and I was biting my lip, trying to keep myself together at the mention of cataract and glaucoma if not treated.

Uveitis

He suggested steroid eye drops 3 times a day and wasn’t sure whether the methotrexate would need to be increased or not, that was for the paediatric consultants to decide.

When I’d previously read up on Charley’s condition I’d read about uveitis. In some cases I’d read about children having to have eye drops hourly and I thought how awful. I hate trying to put eye drops in my eyes so I was anxious already about doing this, before we’d even started.

The first week didn’t go very well at all. I became more anxious as the week went on, we couldn’t find a position that seemed to work to get the eye drop in and my attempts at all bribery wasn’t even working. It was taking too long and Charley was becoming anxious too. Fortunately, the nursery did one of the drops when she was there which gave me (and Charley) a break from it.

After feeling quite rubbish about the drops and having a tearful conversation with my mum (mums are great aren’t they!) it seemed to turn around. We finally found out that if Charley laid completely back and looked for cobwebs on the ceiling with her eyes right up we had a better chance of getting the drops in.

We still have the occasional miss, but it’s going a lot, lot better. Charley is so good. Sometimes she will ask why she has to have eye drops, and I’ll just say to keep her eye happy but mostly she just gets on with it.

Phone call with rheumatologist nurse specialist

I spoke with the nurse specialist and we decided that we would wait until Charley went back for her next eye appointment to see how they were reacting to the drops, before making the decision to increase the methotrexate. They were also waiting to receive the letter from the ophthalmologist to see how bad her eyes were.

Ophthalmologist appointment 9th December 2015

Her right eye has improved and we are down to 2 drops a day, though there is still activity there so he suggested reducing the eye drops to twice a day.

She also had her eye pressure tested, as the eye drops can cause pressure but this was fine.

Phone call with paediatric consultant December 2015

It was decided that the methotrexate should be increased to 12.5mg, disappointing but needed to keep her uveitis under control.

Her first dose of the higher amount fell on Christmas Day when we were ‘alone’ to do the injection!

No more community nurses

I guess we knew it would happen one day. As injection day fell on Christmas Day and we were away the following week on holiday, the community nurses asked if I could be trained to give the injection during this time.

I was a bit hesitant but Charley couldn’t miss 2 weeks of injections so the nurses came for the two weeks before Christmas Day and showed me how to inject Charley.

It went so well. I don’t think Charley had even noticed it go in as she was like ‘oh’ when we said it was done.

So far, she has been fine with me doing the injection, although Tim or mum have always been there for her to sit on while I do it. She does protest a little bit but as long as she sits still for a bit we can do it. I’m not sure, but I think the thought of it is worse for her than the injection. Time will tell, when she is older I suppose.

Ophthalmologist appointment 13th January 2016

At this appointment we were told that her right eye is fine, no more uveitis. She still has to have the eye drops once a day as they don’t like to stop it suddenly but it was very good to hear that it was clear.

Future appointments

We are seeing the rheumatology team in Feb and ophthalmology the day after.

I’m not sure what the plan will be regarding Charley’s medication. We will have to wait and see. Again she seems to be arthritis free, but for how long we don’t know!

 

11 Comments

  1. You are doing very well and Charley looks a picture of health. We hate our children suffering but they are more resilient than we realise. You are ideal to deal with this as you take it in your stride in front of Charley so it’s a normal part of life and who knows it may not be for too much longer.

    Liked by 1 person

  2. Hi Julie, what a brave little girl you have! I can’t imagine what it must be like to have a child with juvenile arthritis let a lone with uveitis too, it must be a continuous worry.

    It can’t be nice having to inject your little girl, but it’s amazing what we can do when we have too.

    So glad Charley’s eyes have improved and hope she stays arthritis free for the long term.

    xx

    Liked by 1 person

  3. Hello from a fellow JIA and uveitis mum. We’re fairly new to this journey and still struggling to get our head around it and to deal with the overwhelming sadness and fear that seems to swamp me most days. Anyway, just saying hello. Helps to know that there are others facing similar challenges x

    Liked by 1 person

    1. Hi there, how old is your little one, when were they diagnosed? The uveitis is a new one for us, flare free for over a year and then uveitis diagnosed too, though it seems to be under control at the moment. x

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      1. Hi, she’s 4. It’s all very new here. The JIA was diagnosed on New Year’s Eve and the uveitis was discovered a few weeks later at her first screening. Her first JIA flare was misdiagnosed a year ago and they think that the uveitis has been there untreated for at least that long. She has some complications from it already and honestly, it terrifies me.

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      2. I’m sorry to hear that. Good that they can start treating her. Have you seen the website http://oliviasvision.org? This is quite informative on uveitis. There is also a closed Facebook group called “Juvenile Arthritis Parents and Families UK”. This is a really great supportive group where you can rant, ask any questions etc. I don’t often post on there but the information on there is so useful.

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  4. Thanks for the tips. I’m in the FB group – find it quite scary, reading all the possible complications that we could face in the future, and pretty heartbreaking to see the battle that so many of these kids have. Will have a look at Olivia’s Vision, thanks. She’s responded really well to the treatment so far – just desperately hoping that lasts!

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