> The Beesley Buzz: Miss T JIA update: 2 and a half years on from diagnosis

Miss T JIA update: 2 and a half years on from diagnosis


They say time flies when you're having fun. I think sometimes when you're dealing with a long-term illness, some days can feel so slow and difficult. Whilst other times when your days and weeks are filled with tests and appointments, everything feels a rush and the weeks can zoom past. Certainly waiting for a diagnosis felt like forever even though Miss T's diagnosis was really quite speedy. And now I find myself looking back and wondering how it can be 2 and a half years since she got diagnosed with arthritis.

That cruel unpredictable condition that is normally associated with the elderly. And there I was with a two year old whose body was riddled with arthritis in multiple joints.

By way of a short summary timeline, here's Miss T's JIA background...
September 2014 - complaining of 'sore toes' - I just kept taking her for shoe fittings and buying new shoes as I didn't think anything else could be wrong. I mentioned it in passing to the GP whenever we were there and they couldn't see anything obvious wrong with her toes. She didn't have a huge vocabulary being just two and a half then, so all she could really tell us was "sore toes" "hurts" "carry-me".

January 2015 - At some point over the Christmas holidays, big brother J had fallen onto Miss T's left foot/ankle in a moment of ASD-related silliness. The ankle swelled and was painful.

When buying new shoes, they struggled to do the fitting properly as the left foot was SO swollen.
Visited the doctor a couple of times over the following week or so. Referred to A&E and the foot was put in plaster as the doctors weren't quite sure what else to do - so they suspected there might be a tiny fracture that wasn't showing up on the x-rays.

February 2015 - She spent a couple of weeks in plaster until the doctors put 2 and 2 together taking into account my own history of JIA - they suspected that Miss T may have Juvenile Idiopathic Arthritis. She was then referred to Great Ormond Street Hospital for the official diagnosis. In the meantime, the local padeiatrician requested a whole host of tests - blood tests, x-rays, MRI scan, bone scan and ultrasound so that GOSH would be equipped with all the information they needed to make a diagnosis.

March 2015 - The official diagnosis came at the end of March. It was a releif to know for sure what we were dealing with, but at the same time we had to recognise that this was just the start of a long, unpredictable journey.

So came the meds, lots of them - I look back on this blogpost which explains Miss T's cocktail of medication she was on along with getting Uveitis too - something that we hadn't taken too seriously until they told us at GOSH to chase up her eye specialist appointment because it was vital to get her eyes checked promptly.

After a few more months of tweaking her meds and increasing her dose of MTX around September that year, we were eventually able to reduce the Naproxen and the MTX took over managing the pain. So probably by around January/February 2016 - a year later - things felt largely under control with a manageable level of medication to administer, and the medication keeping the pain largely under control.

We still had all the other things to have to keep an eye on - regular checks for Uveitis, the physio appointments and her routine appointments at GOSH and locally. There were also more x-rays and MRI scans when things didn't look quite right and of course all the blood tests throughout which are so traumatic but so necessary to monitor the side-effects of MTX. OK so a week in the life of Miss T probably looks very different to a week in the life of another 5 year old child. But all this was pretty much routine to us by now.

She also had the horrible VZIG injction twice after coming into contact with chicken pox before finally contracting chicken pox at Easter this year and ending up in hospital for a week.

And then another period of relative stability until the summer. Just before the summer holidays we noticed that Miss T's right toe was noticably swollen. Her 'massive toe' as she calls it.

Despite going back onto Naproxen in conjunction with the MTX, it didn't make a difference. So she's due to have an ultrasound this week to investigate further. The MRP blood results also came in from when they were taken in June - this is an indicative marker to assess whether the arthritis may have gone into remission. Sadly her score was low - which combined with the swollen toe happening we probably shouldn't be surprised about but 2 and a half years into the journey it did come as a disappointment to find we're no closer to the end.

I'm not sure if there actually is 'an end'. People often ask me whether she'll grow out of it. Of course, we hope and pray that she will free from the pain and discomfort of arthritis but the reality is that once you've got a diagnosis of JIA, it's a diagnosis for life.

This article on "Kids get arthritis too" explains it better than I can. But sadly it's not great news...
“About 44 percent of children will achieve clinical remission off of medications,” says Dr. Wallace. “But, by the time they have reached three years off their medications, 40 to 70 percent of them will have had a flare.”

Why this update now? Last night was a bad night. After a lovely day out in the Autumn sunshine, she went to bed screaming in pain. Pain behind her left knee. A new location. No visible swelling but so much pain. We gave her extra meds and thankfully by the morning it had settled down.

But with her toe, her knee pain and her jaw still under investigation, sometimes I just want to wave a wand and wish it all away for her. She's even gone through a spell of anxiety nausea on Fridays related to her injections as well as nausea being caused by the MTX too.

Just as quickly as the weather changed from sunny skies yesterday to a rainy day today, her arthritis situation can change. Just as I thought we were having a period of stability and it's all back up in the air. Again.

I have to end with some positives though...Recent breakthroughs that have helped have been making her injection process smoother...


  • She's always hated the antisceptic wipe that comes with the metaject MTX injections and as long as her legs aren't hugely grubby, we've found out that it is fine to do the injection without using the wipe first. That was our first breakthrough. 
  • Doing the injection before her dinner rather than after seems to help with sickness. 
  • We no longer use a plaster or afterwards. She's always reacted badly to plasters so we've only ever been able to use a plaster for a short time before removing it anyway but removing it still causes her distress whether we use a proper plaster or a gauze pad with micropore tape to prevent an allergic reaction - she still finds it distressing. Now we just wipe the injection site with a gauze afterwards to mop up any MTX that may have oozed out and once we're confident it is fine, we leave it with no plaster on at all. 
  • Distraction also helps - she has a box of 'jewels' she likes to look at or her big brothers will distract her with an iPad. 
  • If we have a necessary long journey to do on Saturday, we sometimes delay her injection and do it on Saturday evening rather than Friday to help minimise the risk of sickness (it seems to make her more likely to have travel-related sickness if she's had the MTX beforehand). 
She's my brave and beautiful girl and whilst we can't take the arthritis away from her, we will do anything we can to help. 









6 comments:

  1. It's so sad that you all have to endure this horrid condition, poor Miss T. the pain must be horrible for her. But as I know to well it's not just the child with the pain that suffers, it has a knock on effect for everyone. I really hope that she gets some remission xxx

    ReplyDelete
    Replies
    1. thank you Anne. Hoping that the day will come that she can enjoy life without being reliant on the meds. In the meantime, as you know, it's just a case of making the best of the situation at any given time, trying to focus on the positives. x

      Delete
  2. Wow what a lot to contend with so young. She is lucky to have such a great family to surround her and hopefully she will get some time to enjoy childhood.

    ReplyDelete
    Replies
    1. thank you - she is just a brilliant little girl - always has a fabulous attitude and somehow takes things in her stride even when the rest of us don't. x

      Delete
  3. So sorry to hear MissT now has knee pain too, in addition to other areas. It is so tough what she has to deal with. She is very brave with the pain. And I would definitely agree with you linking the MTX to travel sickness, as son1 used to suffer dreadfully even on half hour journeys, but since finishing chemo, he hasn't had any travel sickness. He too will hold a gauze pad in place for ages afterwards, just to avoid a plaster

    ReplyDelete
    Replies
    1. That is good news to hear that the travel sickness stops once the chemo stops. I wasn't sure how related it was - but it certainly seems to be the case whenever we travel anywhere on a saturday that it triggers her sickness. x

      Delete

We are currently using word verification due to spam comments. Sorry for the inconvenience.
We love receiving comments and read every one even though we don't always get the chance to reply.

Related Posts Plugin for WordPress, Blogger...