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. 

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My Mighty Son, by Virag Wheeler-Mezei : A heartfelt and powerful account (book review)

Review by Richard Beesley

We were recently invited to read and review My Mighty Son by Virag Wheeler-Mezei, and I'm very glad we did. The book is an account of an incredible and very moving true story, of endurance and perseverance, of never giving up, and of profound love for a child and recognising the work of God despite everything around us.

The book follows the life of Virag Wheeler-Mezei. She grew up in Hungary before moving to the UK in 2008 where she met and fell in love with James. They got married (in a beautiful castle in Hungary, surrounded by family and friends) then started to build their lives in Bath. My wife and I met in Bath, too, and it is a truly special place for us as well. After a while Virag became pregnant and they were delighted when baby Luke was born.

By all accounts, Luke was a special baby. He was loved deeply by his family, and he appeared to be healthy and growing well. But then the world fell apart for Virag and James, as Luke was diagnosed with an aggressive brain tumour. He spent a huge amount of time in hospitals in Bristol and Bath, undergoing numerous operations then chemo- and radio-therapy to get the tumour under control. What would have broken many of us, Luke and his parents went through. Despite complications, problems, and mistakes being made by a small number of the many people trying to help, Virag and James stayed strong and stood beside Luke and helped him through each day.

Throughout this book, Virag explains how she heard the voice of God giving her hope, support and guidance. With overwhelming odds, Luke battled against a cancer that was stronger than his medicines, and his parents learned to take on tasks that no parent should have to - cleaning a tracheotomy and replacing the line, for example.

The record of her early years growing up are scattered with little snippets of information, and it gave a sense of how things used to be and how she and her family had lived. The honesty throughout the book is a testimony of Virag and James' love for Luke and each other.

This is a hugely powerful and moving record of what they went through. Virag's raw emotions come through, and she is wonderfully honest.

Not everything in this account is nice to read. It isn't all good news. It's about a little boy who suffered a terrible disease. But much more, it is about the love of his parents, about the hope they experienced, about the miracles along the way - the right people at the right time, the encouragements, the little turns that brought some glimmer of possibilities. This is a book about real people experiencing horrible things, and still loving each other and recognising the love of God through it all. This book is about hope.


For more information about Luke's story, visit mymightyson.co.uk where you can order a copy of the book, and find out more about Virag, James and Luke.

Disclosure: Virag and James sent us this book to keep for the purposes of review. All opinions are our own. And this is definitely a book worth reading.

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Healthy-ish Millionaire's Shortbread: GBBO Bloggers Week 4 - Caramel

Over the years I've had so many disastrous bakes that it feels really nice to have had a run of good bakes in recent weeks. When I start to experiment in the kitchen I never know quite how it's going to turn out and it always surprises me when things go well!

This week on bake off it was Caramel week. I had no idea getting caramel right was so tricky! I've actually made it before and ignorance must be bliss because it turned out fine without any stress. Must have been beginners luck. And I didn't want to push by luck or expand my waistband too much so I haven't made a 'proper' caramel this week.

Instead I've made my favourite healthier alternative. I originally found a recipe for salted caramel on Livia's kitchen in her Salted Caramel Fondant recipe but I've tweaked it over time to make my own. The original has 50g coconut oil, 90g cashew butter and 100ml of maple syrup with a pinch of himalayan salt. Today I made it with 25g coconut oil, 35g cashew nut butter, 10g peanut butter and 30ml of date nectar with a pinch of himalayan salt. The ingredients are heated together and mixed until combined, then left to cool a little.

But first things first. The shortbread. Again I wanted a healthier twist so I went with 90g ground almonds, 20g coconut oil and 8g coconut sugar. Then for some random reason I threw in 10g of chia seeds. I'm glad I did as they added a lovely crunch.

I used two small cheesecake moulds to bake the shortbread in by just pressing the mixture into the mould on a baking tray. The quantity listed here actually would have made three of these but I ate the rest uncooked as all those ingredients are fine to eat raw too.

I baked the other two in the oven at 180C for 12 minutes. Then left them to cool.

I poured on the 'caramel' sauce and popped them in the fridge to set firm.

Then it's time to make the chocolate. This is Henrietta Inman's recipe for dark chocolate from her Clean Cakes book (you can also find it here) and I manage to make it all in one jug - so it's really simple.

I actually use only a fraction of the quantities so 50g cacao butter, 25g cacao powder (I used Aduna), 18g maple syrup and a pinch of vanilla powder (I used Ndali). I melt the cacao butter on a low heat in the microwave and then mix in the rest of the ingredients. So simple.

I left it to cool a little because I didn't want to risk it melting the caramel. Then poured into the cheesecake moulds. I tried one with a thinner layer and one with a thicker layer. I preferred the thick layer.

I decorated one with some Nim's pineapple crisps - because they look kind of autumnal to me, along with some toasted flaked almonds to give a hint about the almond base. I left the other one plain.

Nim's pineapple crisps made to look like a flower with a dot of peanut butter covered with chia seeds in the middle

It was only afterwards that it occured to me that it would have looked good flecked with edible gold. Oh well.

I'm really pleased with how they turned out - and relatively guilt-free too!

Linking up with Mummy Mishaps GBBO Bloggers 2017:

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"I can't stop Andy from growing up. But I wouldn't miss it for the world" Woody, Toy Story.

We were thrilled to be sent the Aquabeads Toy Story Character set to review. Miss T knew she wanted to make the Little Green Man from Toy Story and D said he would like to make Woody. There's also the template and beads for Buzz Lightyear and they're yet to decide who will lay claim to Buzz.

We're big fans of Aquabeads. It's not just the kids that love them, but I love the mess-free way that the kids can be creative and have fun, without the mess. Did I mention that there's no mess?

Don't get me wrong. I believe in the value of messy play. I really believe in it. My cupboards are full of paints and things like shaving foam and cornflour for messy play sensory fun. But sometimes I just get fed up of being the one who has to clear up afterwards - so it's really nice to have kits like this that the kids can do without making much mess at all.

You see, Aquabeads don't need glue or any kind of special adhesive, it's plain old water that sticks the beads together. Genius!

We've had lots of fun in the past with Aquabeads - You can get a starter set, called the beginners studio which was a gift that Miss T received ages ago and loved. Then there are loads of playsets too with various popular themes and recognisable characters. In the past, we've reviewed a Star Wars themed Aquabeads set, a Finding Nemo Aquabeads set and a Cars Character set.

The Toy Story set, like all the Aquabeads sets, is suitable for children aged 4 and over. It includes 3 popular Toy Story characters to make...Woody, Buzz Lightyear and the Little Green Man.

Unlike some of the sets, this set doesn't include a bead palette to store the beads in. As we have several from other sets, this isn't a problem for us. It also doesn't include a bead pen which can be useful as the beads can be a little fiddly at times. It is definitely worth getting hold of one and the Aquabeads Bead Pen can be found on Amazon or at other good toy retailers. 

The items it DOES include in this set is the layout tray, the templates for the 3 Toy Story characters, a sprayer for squirting the water and all the beads you'll need to make these characters. 

Miss T used the bead pen from a previous set of Aquabeads, they can be bought separately too. 

We've noticed that on the back of the packs, they always list very specifically exactly what is included, even down to the specific number of beads of each colour - so you really do know what you're getting. 

I've also just recently discovered that there are a whole heap of downloadable templates on the Aquabeads website so if you want to keep refilling your collection and making different designs, there are loads of possibilities. 

I was incredibly proud of Miss T as she worked really hard on getting all the right beads in the right places and although I was right there alongside her to help if she needed me, she stuck with it to the end until the Little Green Man was completed.

She did stop for a cup of herbal tea part way through!

Once all the beads were in place, she squirted them with water from the water sprayer.

Each pack comes with full instructions on how to do this. It's really easy as you literally squirt water all over the beads. We've found the important bit is to not 'over-water' them so by tipping off excess water it helps the designs not to curl or break so easily.

If it does go wrong, the instructions tell you how to put it right. Reassembling and then adding another squirt of water usually does the trick.

And then he was done. We left him overnight to dry and Miss T was delighted with how he turned out and rightfully very proud of herself too!

A set like this would make a great gift for an Aquabeads fan or Toy Story fan!

You may recall that it was D who reviewed the Star Wars Aquabeads set and the Cars play set. The last one that Miss T reviewed was the Finding Dory playset and as much as she enjoyed the process she struggled to finish it. This makes me realise just how much she is growing up. How her concentration has improved, how her dexterity and fine motor skills are improving and developing. She's growing up.

As I rush around on my own agenda with chores to do, with dinner to prepare and with my own projects and tasks I want to accomplish, I have to remind myself to stop and just take the time to enjoy these moments like sitting alongside her whilst she completed her Aquabeads little green man.

As Woody famously said, "I can't stop Andy from growing up. But I wouldn't miss it for the world."

The Aquabeads Toy Story Character Set can be purchased from Amazon and other good toy retailers.





We are delighted to be official Aquabeaders!

Disclosure: As official Aquabeaders, we were sent the Toy Story Character Set for the purposes of review. All opinions are our own. This post contains an Affiliate link which means that at no cost to you, I may receive a small payment if you buy something from a site I link to. I only recommend and link to products, services and companies that I am happy to promote.

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Conquering the laundry mountain with Ecover! #EcoverLaundry

Mountains are majestic and huge. To conquer them can take courage and faith and determination. Quotes about moving or overcoming metaphorical mountains remind us of how solid and permanent mountains are, representing something so difficult to shift.

And that's certainly true in our household. Since we had children we have also become parents to a massive laundry mountain. One that does not ever shift or move.

The best I can hope for is to reduce that mountain to a manageable height - with a daily load of laundry, this is just about manageable.

Until, that is, we go on holiday. Upon returning home, we find that our mountain becomes an entire mountain range!

I know I'm not alone. I have a feeling that a 'laundry mountain' is the bane of many parents' lives. So this is my guide of lessons I've learnt along the way. Little things that have helped me to conquer the laundry mountain. We've been putting Ecover's non-bio Lavender & Sandalwood concentrated detergent to the test and that has certainly been of help. Read on to find out why.

Tip 1: A helping hand

Young kids love to help with chores. Make the most of it whilst they are young enough to want to help. They'll see it as part of playtime - sorting the laundry into piles, matching socks, helping to load and unload the washing machine. It's a really fun way for them to learn about colours, counting, size and it gives you a helping hand too!

Tip 2: Look at those labels

I used to think I knew exactly what the laundry symbols on clothing labels meant. Surely it was obvious whether something needed to be hand washed, whether it could be tumble-dried and so on. BUT I had no idea what those additional lines that sometimes appear under the machine wash/temperature symbol meant.

When an expert came out to fix our washing machine, I learnt something new...the more lines, the more gentle a wash that item needs. So no lines - it can have a normal wash, 1 line needs a more gentle wash cycle and 2 lines an even more delicate cycle still. So don't just stick to the same wash cycle all the time - look at those labels and set the washing machine cycle accordingly. Your clothes will last better and thank you for it. Remember that a lot of clothes can now be washed at 30 degrees - saving on energy - making it better for the environment and for your bills! Using Ecover's new detergent, we found that it was great with stains, even at 30.

Tip 3: Clear your cupboards

I used to have a cupboard full of various detergents and softeners but if you find a product that can meet the whole family's needs when it comes to washing all their clothes, not only will it save you money by buying fewer products, it can also clear the clutter from your cupboard by having just the one bottle of detergent instead of 6 different ones!

So whether you've got a newborn baby and you want super-soft babygrows, or a messy toddler where you need to tackle those tough stains, or even the teenage years with oodles of smelly socks to wash, we were pleased to find one detergent in the form of Ecover's non-bio lavender & sandalwood that can handle it all.

The smell is just amazing. I've actually stopped using any softener or freshener in my wash since I've been using this as the lavender and sandalwood scent does the job of leaving clothes smelling super fresh. And not in a sickly overpowering way as some detergents do. I'd go as far as saying that this scent is more of a relaxing spa smell. Personally I love it!

I've tried it out on towels and bedding and even on a dress I bought for Miss T in a charity shop to really freshen it up. I even washed a duvet with it. Hoppy and Patch have had the Ecover treatment and came out smelling super too!

So there's my top three tips to help you conquer your laundry pile as I've conquered mine. I thought it would be fun to make a little infographic of the Beesley household's own laundry mountain to illustrate:

We started by talking about mountain quotes and so I'll end with a lovely positive one from Dr Seuss as I wish you much luck with conquering your own laundry mountain. I'd encourage you to give Ecover a try if you haven't already, it comes highly recommended and we've always adored Ecover's green credentials and how they've been leading the way since 1979 in making products that work brilliantly AND care for the planet too.

You're off to great places,
Today is your day!...
Your mountain is waiting,
So...get on your way!

You can find Ecover on Twitter at @EcoverUK, and on Instagram at @Ecover_UK. We were kindly sent a full-size 875ml Ecover detergent to try for the #EcoverLaundry challenge along with a laundry bag. 

This post is an entry for BritMums #EcoverLaundry Challenge, sponsored by Ecover. 

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In the Sunday Express this week: My JIA Story

I've been asked a few times to share my story of Juvenile Idiopathic Arthritis (JIA) in magazines and the press. Since Miss T was diagnosed nearly two and a half years ago when she was just two years old, I've been especially keen to raise awareness of Juvenile arthritis.

The sad thing is that in the past 30 years since my own diagnosis, arthritis is still considered to be an 'old persons disease'. I see the same shocked expressions when people hear of Miss T's condition being arthritis as I did when people used to ask me why I was on crutches back in 1987.

This needs to change. Not just change for the sake of change but because if awareness is increased, then it will have a tangible effect on the quality of life for those children affected. Even amongst medical professionals, awareness can be low - so when a GP is presented with a child with joint pain or swelling, they may not even have JIA on their radar as a possible option.

These days, prompt diagnosis can mean prompt treatment and whilst there is no cure, treating the JIA quickly can make all the difference and prevent lifelong joint damage from occurring.

So that is why I tell my story. I'm particularly pleased with the article in the S Mag supplement of the Sunday Express this week because it tells the story in a lot more detail than previous journalists have done AND it tells a little of Miss T's story too. You can find the article online here if you missed the paper on Sunday.

Whilst I have found ways of helping my condition, taking the GOPO joint supplement for example on a regular basis, because the joint damage was done all those years ago, life is far from perfect where my arthritis is concerned.

I hope that for children being diagnosed these days, it will be a different story.

I'm always wary about making people think there is any miracle cure out there but it is good to hear of other cases where something they've tried has helped. Here's Larry Lamb telling of his experiences of joint pain and taking GOPO.




I want to point out that this blogpost is not sponsored content. I have been taking GOPO on an ongoing basis since I did a blog trial of it a few years ago which you can read about here. The people at GOPO have kindly continued to send me GOPO, but I only continue to take it because I feel it helps me.

For children with JIA, I strongly recommend following the medication plan from their rheumatologist. Miss T has methotrexate injections on a regular basis and we will continue to follow the medical advice from her rheumatologist. At some point in the future when we hope that her condition is considered stable in adulthood, I would encourage her to try GOPO for ongoing joint health.

We've put together some information on JIA here that helped us a lot when Miss T was first diagnosed in case it is of use to anyone going through a similar situation.

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Mauritius Memories - Saturday 12th August.

Saturday 12th August 2017.

12th August is a day I hate. It was 15 years ago that my life changed forever when I lost my mum unexpectedly. At the time I told myself that there are worse things that can happen in the world and tried to carry on as normal as possible. Big mistake - by not allowing myself to grieve properly at the time, grief seems to creep up when I least expect it. What I have since learnt is that whilst there are worse things in the world that can happen, at the time she was the world to me. She was my world. 

Anyhow we have a busy day planned today including visiting a volcano. A bucket list wish of mine since childhood. Weird but true. 

We're heading off resort to experience a bit of the real Mauritius.  After seeing the scenery on the way here and the variety of architecture I'm really looking forward to it. 

Hoping for a better day ASD-wise. 

Tonight we're booked into the Asian fusion restaurant, Le Banyan, so it will be interesting to see what that is like. 

Waking up earlier than usual for a quicker buffet breakfast in order to be ready for our driver and minibus at 10am. The hotel is also getting a packed lunch ready for us so that will save time for the sightseeing to cram more in. 

Written on Sunday 13th August am.

What is it with holidays - I'm feeling so exhausted by the end of the day that I'm asleep as soon as my head hits the pillow. 

Yesterday was the day we headed off resort to see some of the rest of Mauritius. 

First stop was the pamplemousse botanical gardens where we had just over an hour to zoom round. 

We saw the Talipot tree which flowers once every 60 years and then dies. We saw giant water lilies which were huge but apparently grow even bigger during the summer months here (November and December) and there were giant tortoises there too. 

Next stop was the volcano. The crater is 300m wide and there is a walk that can be done all around it. We didn't.  Too many ailments and arthritis in our group. We didn't stop for long as it started to rain lots. 

After that we stopped at the lakes and the hindu temple by the lake. 

 

The "view" at the viewpoint! 

After that we stopped at a view point without much of a view. It was so foggy and wet that 3 of us nearly didn't bother to get out the car but I am so glad we did. 

Whilst looking at the non-existent view we were surprised by a family of monkeys who appeared out the fog and came very close.  That was an amazing unexpected surprise to be so close to wild monkeys and the highlight of my day. 

 

The "view" gradually coming into view

The fog also began to clear enough to see a little of the view including a waterfall in the distance. 

After that we went to see a place famous for 7 different coloured sands, the the seven-colored sands of chamarel, except they looked rather underwhelming and very much the same colour. When we walked to the other side the sand did appear to be different shades.

Close by, there was another amazing waterfall to see. With the combination of the downpours of rain and waterfall visiting, it reminded me of our waterfall outings in the rain in Canada a couple of years ago. 

And finally back to the resort for dinner. Miss T slept for a while en-route back and I was wowed by the number of mango trees that seemed to be everywhere.  Next month mango season begins and it's crazy to think that a fruit we consider to be so exotic is so freely found growing along the streets here. 

 

Miss T using her Trunki Boostapak which we bought ages ago in preparation for this holiday

We also saw a pineapple plantation and the odd banana tree or two. As well as masses of sugar cane of course. We also spotted a couple of baobab trees and lots of banyan trees.  We were also told of how certain times of year Chinese guavas grow in the hedgerows and how people come to pick them at weekends much in the same way that we would go Blackberry picking. 

Dinner was booked at Le Banyan.  

The kids struggled to find anything on the menu that they would enjoy. I ended up with indigestion as the options I had were deep fried. I'm beginning to think that the Belle Vue is the best family friendly option here after all. Although it has been nice to try the different restaurants for a change of scene. 

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