> The Beesley Buzz: Miss T and JIA: an update

Miss T and JIA: an update

It's been a while since I wrote an update about Miss T and how she's getting on since getting a diagnosis of Juvenile Idiopathic Arthritis a few months ago.

I find myself torn between wanting to pretend it's not happening, ignoring it and just blogging about the 'normal' stuff and showing all the fun Miss T has or facing the reality of her being filled up with medication each day in order for her to be able to walk, along with having to face needles too with a weekly dose of methotrexate and a blood test every two weeks to closely monitor the effects of the methotrexate. 

Like anything in life, I guess it is about finding a balance. I feel that she will need to know a little about what's been going on with her health as she grows older and as it's something that could well affect her own children or J and D's children, I guess it might be useful for them in the future to have some kind of record of what's been going on. 

It might also prove useful to someone else whose child has just been diagnosed with JIA. I know I find other blogs a huge source of information and support about all kinds of topics, and as JIA is not widely known about it might just be helpful to someone at some stage.

I want to remember to include the fun stuff too so I will try to include some of the happy things Miss T is saying and doing. Even though the 'wot so funee' linky is no longer running, I still think of some of the things she says and does as 'funees' so will include some of her latest ones at the end of this post. 

A basic recap of Miss T's situation. Initially starting as a swollen left foot thought to be caused by injury, showed no signs of recovery and got worse after being immobilised in plaster. Right knee joint and right toe also showed swelling. After examination at Great Ormond Street, they found her right elbow to also be affected. Combined with my history of arthritis starting at a young age and how her joints were looking (swollen and hot to the touch), Miss T was diagnosed with polyarticular JIA (the poly bit meaning that multiple joints were affected). 

By the time we went to Great Ormond Street, this was actually the news we were expecting and hoping to hear. By getting a speedy, clear cut diagnosis we knew we could get a plan of action in place to get treatment started. A few weeks before that point, after various scans and tests carried out locally, it had been a shock to hear that it could be arthritis. Yet the timing was incredible as I had only days before been speaking about my experiences of juvenile arthritis at a conference. During the conference I'd heard about the importance of fast diagnosis (to prevent long term joint damage occurring) and the treatment options available (which was a lot more than had been available when my own arthritis started all those years ago). 

The research that was presented also showed that there are nasty side effects to treatment and some young people find it so tough, they'd rather live with the pain and long term damage that arthritis does than stick with their medication and treatment plan. 

The treatment for Miss T was to have a 6 week course of steroids orally and to commence the weekly methotrexate injections. The hope being that via injection, the methotrexate would have less chance of causing nausea. She was also taking naproxen as pain relief and this was to continue until the methotrexate was well established. Omeprazole was necessary to protect her stomach from the naproxen. Abidec to help with vitamin d levels. And folic acid is necessary to be taken when on methotrexate. 

We were also advised to get her eyes checked urgently as uveitis can also occur in conjunction with arthritis and left untreated, can have serious implications. She did have uveitis and was started on maxidex steroid eye drops 4 times a day. 

It's taken a lot of focus and organisation to make sure we get the right meds in her at the right time. She has for the past 6 weeks or so been taking medication of some sort around a dozen times each day. Today her steroids have reduced to 5 mg from the original 15mg and her eye drops are down to once a day. So in some ways it feels like progress. The pain is still there so there is no sign of being able to reduce the naproxen yet. She is also feeling nauseous occasionally. And she is still on a LOT of medication but the end of the steroids being in sight has helped. They have made her grumpy which is not like her at all so we will be pleased when she can end the steroids completely.

She had to be rushed to hospital for the vzig jab when someone at her preschool came down with chicken pox. We live in constant fear of other illnesses as her immune system is compromised because of the methotrexate so even relatively mild illness can have serious complications for her. 

Thankfully she sees to have steered clear of infection so far. Long may that continue because sadly the methotrexate is here to stay for some time. They reckon around a minimum of 2 years of weekly injections. 2 years. That seems like forever for a child. Yet thankfully she is too young to have grasped that sort of understanding of time so we are just taking each day and each week as it comes. 

I'm so glad for many things. I'm glad that we have just two more weeks of the steroids, then hopefully these can be dropped. I'm thankful that despite the pain she does have, the pain relief does enable her to walk (I was bed bound for months when my arthritis began), I'm glad that we are carrying on with 'normality' as much as possible, I'm glad that there has been enough progress in the last 30 years that there is treatment available. 

Now onto some fun stuff...Here are some of her recent 'funees':

  • 9/4/15 J says I want a bath rather than a shower. Miss T replies 'but you're not a giiirl' (as if for some reason she thinks only girls are allowed to have baths and everyone else must have a shower). 
  • May 2015 - When she accidentally knocked her cup of water over 'Water jumped off the table!'.
  • 11/5/15 - She has a lovely grobag from the gro company and as she struggled out of it one morning she described it as 'my sleeping bag hugging me'. 
  • 13/5/15 - When I passed her some rubbish to put in the bin, she already had both hands full with stuff she was holding and says to me 'I'm not an octopus!' as her way of explaining that she didn't have enough hands to help me. 
  • 19/5/15 - We found this one hilarious. 'I want a parachute' A parachute? we asked. 'Yes a parachute'. Then we realised she meant a 'sharon fruit' but she'd forgotten what it was called. 


So a brave, funny littlegirl who is doing really well considering everything. Oh and she adores slides!


I just feel the need to mention that this is Miss T's story and experiences and not to be taken as medical advice as everyone's case may be different. We just want to share her story to raise awareness of the importance of early diagnosis and treatment of JIA and to let others going through the same thing know that they are not alone. 

10 comments:

  1. She is brave and funny and beautiful. I'm so sorry she is having to go through this but it sounds like you are coping admirably together. I remember when my eldest (now 27) was around 4 and he had really bad asthma which put him in hospital at least 10 times one year, every time we went the same little girl was on the ward and she had JIA. I guess it goes to show how much treatment has improved as I'm thinking Miss T may have been spending so much time in confinement so many years ago. I know it won't go away, but I hope with the right medication she can go on to lead a normal life as possible with as little pain as possible. Thinking of you always xx

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    1. thank you so much for your kind words Anne. I know just how tough your year was last year and I was thinking of you often too. thank you x

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  2. Christine Mc Dermott23 May 2015 at 11:00

    Dear Rebecca, just read this blog, brings tears to my eyes just thinking about Trinity and all of you, especially you I suspect, having to cope with pill timings, doctors and hospital visits, injections, etc. etc. I put my arms around you all, can understand a lot more now with arthritits and osteoporis, and an auto immune disease, Hashimotos, and my leg, how frustrating all of it can be, and so worrying too. Trinity's problems put all mine into perspective, what am I whinging about!!!!!!!! One thing I am really angry about is that they have turned me down verbally for a Blue Badge, and now am definitely a prisoner in the home, so watch this space, if necessary I will call call in the media to help! xxxxxxxxxxxxxxxxx

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    1. Thanks Christine. You've been through so much too Christine - It's never easy when life is dictated by hospital appointments and pain levels. x

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  3. coming back to your blog after sometime just to read about Miss T! I can completely understand how painful it is to see the little one going through series of medications and injections. You are a brave mum and I am sure you and little one will stay strong and find the ways for Miss T to get better.

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    1. So lovely to hear from you Rishi. thanks so much for your kind comment. x

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  4. I was just wondering how little Miss T was getting on. Blogs are so value in support and knowledge when it comes to lesser known illness.

    She's such a great kid, you're very blessed x

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    1. thanks so much Rachael. I keep feeling i need to do little updates once in a while about her arthritis because it might well be of use to someone one day but at the same time want to keep it balanced and show that despite this she is such a lovely happy kid. x

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  5. She is a beautiful little soul an I'm so glad you are taking it one day at a time, that is all you can do. I'll be keeping you all in my prayers. Love Mich x

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    1. thanks so much Mich. She is doing well despite all the meds and the pain she is in at times x

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