> The Beesley Buzz: One step forward, two steps back - Miss T JIA update

One step forward, two steps back - Miss T JIA update

This time last week I was buzzing with happiness...Miss T had her latest Great Ormond Street appointment and her ultrasound scan showed that her feet had no swelling or abnormality showing. She had complained far less of any pain in the previous few weeks. Her physiotherapist had been really pleased with her progress. She'd been gradually walking further and further distances. We had been able to cut down on the naproxen and then stop using it altogether as the Methotrexate finally seemed to be giving her the pain relief that it was supposed to.

We had a plan of action - to continue with Methotrexate injections for another year and then a different type of blood test could be done to help assess whether the actual arthritis had gone into remission by then.

Her jaw may need an MRI at some stage but that didn't seem to worry the doctor too much.

She was given antibiotics for a chest infection (which our GP had failed to spot the day before) - They promptly kicked in and her cough soon subsided. It had been a difficult week to have her stuck indoors with a high temperature and horrible cough that was preventing her (and us!) from sleeping and was so persistent that it led to her vomitting when she couldn't catch her breath. She had lost her appetite all week but she had kept up her fluid intake so I wasn't too worried about that.

And so there we were at the end of the week on a real high in terms of how well she was doing with her arthritis.

Then this week it really feels like a case of one step forward, two steps back. She has struggled with walking anywhere - crying out in pain saying 'my feet hurt, my feet hurt'. It seems to be the right foot causing more pain (whereas the worst affected was previously the left foot).

She has had to use the wheelchair to cover any kind of distance.

I am hoping that she is experiencing pain because we had to miss last Friday's MTX injection because of her high temperature and that once she has today's injection the pain will improve. It is supposed to work over the long term so in theory missing a single dose should not have such an impact but I am hoping that is what it is that has resulted in pain so that it can be put right.

And then there was the outbreak of chicken pox at preschool. Catching chicken pox can have an extremely serious effect on her whilst she is on Methotrexate. So it was panic stations and calls to the hospital to get immunoglobin / VZIG injection organised which she has had once before and it is horrible - such a huge amount to be injected and really painful for her.

Bearing in mind she is used to injections, having them weekly, she is usually incredibly brave. But even for someone so used to injections, this was really horrid. They had to split it between two injections and two nurses had to inject it into her leg muscles at the same time.

What we hadn't realised the last time she had this was that this will only cover her for 3 weeks and then it is back to square one. Another contact with chicken pox and she will have to have another VZIG injection.

One of the things I'm learning through all this is to learn to be far more relaxed about planning ahead - I am rapidly getting used to all my plans going out the window on a regular basis. We are learning to enjoy and make the most of the good days - the pain free days - the days with no illness or cough or temperature which she is so prone to at the moment.

And if she can smile through it all, then so can I.
My brave and beautiful girl




11 comments:

  1. Oh no! Sorry to read this. Glad there are still some smiles though xxx

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    1. thanks Louise. She is just so delightful x

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  2. She's so beautiful
    I'm sorry to hear these troubles you guys are going through xxx

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    1. thanks Rachael. It is all up and down - lots of good days and then a spell of bad days. x

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  3. Glad she is still smiling but it so tough when our little ones have to go through things like this. Son1 now has the MTX orally every week, but he had to have it intravenously several times in the early stages of his chemo. And I'm worried as to the long term impact of this medication on the brain. Luckily he hasn't had to have the VZIG, as each time there has been a chicken pox outbreak, he's had a blood test and still been immune.

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    1. your son has been through so much and has been so brave. Each time we visit great ormond street, i realise how many children are facing such difficult illnesses and it makes me realise that Miss T is lucky that there is treatment for her condition and it is working on the whole. x

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    2. Yes I'm counting down now. Less than 4 months of chemo left. Hope Miss T has a better week this week

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  4. She is really smiling through this isn't she? Not easy on any of you though, and I really hope things improve xx

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    1. She's actually had a good easter break away from germs and staying well so the past couple of weeks have definitely been more positive. x

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  5. That smile is just delightful, you would know what she has suffered, and still it. I really hope you get some good weeks ahead, and no more chicken pox scares xx

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    1. thanks anne. We've actually had a good couple of weeks since i wrote this so feeling positive at the moment. x

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