> The Beesley Buzz

A week in the life of a child with Juvenile Idiopathic Arthritis

This coming Friday,  9th June 2017 is Wear Purple for JIA day. This is a campaign to raise awareness that children can get arthritis. In fact, in the UK there are 15,000 children with JIA* with more than 2,500 children developing JIA each year.

And yet it is STILL often thought of as an 'old persons disease'. Everyone seems to know someone with arthritis and it is often a granny, grandad, great aunt or generally someone elderly. Often it is not thought of as a serious condition. Just a minor annoyance. Aches and pains that are expected as one gets older.

So I thought what better way to highlight that CHILDREN DO GET ARTHRITIS and IT CAN SERIOUSLY AFFECT THEIR LIVES than by giving a glimpse into Miss T's life with arthritis this week in the run up to 'Wear Purple for JIA' day.

So let's start with last Friday to get a glimpse of the entire week.

Friday
We set off first thing in the morning to make our way to the train station to get to London. She had a routine appointment with her consultant at Great Ormond Street as well as her physiotherapist there. The appointments don't always fall on the same day but if they are likely to fall around the same time we try to ask that they are the same day to save having to travel on two different days.

The doctors started their clinic around an hour late. We have nothing but praise and appreciation for all the medical staff involved in Miss T's care. It is just a fact of hospital life that there can sometimes be long delays. On a previous occasion we had to wait for nearly 3 hours where the clinics were running late. But once you are in there, they give you all the time you need to make sure that your child has been thoroughly examined.

We knew Miss T was due to have her regular blood tests so we delayed them to be done at GOSH rather than at our local hospital as her consultant had indicated that she may need some different blood tests done at the same time when we visited. We've found that using both EMLA cream and a cold spray for blood tests seems to help. At our local hospital we hold Miss T in a bear hug so she can't see what is happening. On Friday she was facing forwards and so it was more traumatic than usual for her. They managed to get blood first time from her arm although it has left a bit of bruising.

On some occassions it can take 3 or 4 attempts in different locations (both arms and both backs of hands) until they succeed in getting blood. She's been having these blood tests at regular intervals every few weeks for the past 2 years since she started on the Methotrexate treatment as it is important to monitor the liver function to make sure it is not being harmed from the methotrexate.

Friday is also her Methotrexate injection day. We've written before about how much Miss T hates Fridays. However by the time we got home from London it was late and she was tired so she had her folic acid meds and got to bed. We can give the methotrexate up to 24hours before or after it is due so we decided to do it on Saturday.

Saturday 
After drama class on Saturday, we got out the Methotrexate equipment. The sharps bin, her record sheet we've created to keep track of her treatment, gloves (as the methotrexate is cytotoxic) and gauze swaps and plaster or micropore tape and more gauze.

At the sight of the big sharps bin, she begins to squeal. "I don't want my injection" "I hate injections". It is a weekly occurence. She knows it has to happen. She knows without it she wouldn't be able to walk. Just two years ago she was in so much pain and agony she needed a wheelchair to go anywhere and would crawl around the house in pain unable to walk.

The methotrexate keeps the pain under control and by reducing her immunity helps stop the arthritis attacking her joints which would otherwise cause permanent joint damage.

Sunday
Sunday morning we had the usual "I feel sick" feeling first thing. One of the side effects of Methotrexate is that it can cause sickness. She's tried various antisickness medicines from phenergan, to stemetil and most recently Odansetron. We seem to find that if she is going to be sick, she's going to be sick and the anti-sickness meds don't seem to have much effect.

Having said that the worst sickness only seems to happen if combined with travel. So if we have a longer unavoidable car journey to make at the weekend we go armed with buckets, wipes and changes of clothes.

Otherwise we try to limit long car journeys at weekends as she's usually ok again by Monday.

Monday
Monday was an inset day from school. The weather was nice to we headed to the park for a play. Then popped to granny's to see Fudge the Dog.

Tuesday
Although all her classmates were back to school today after the half-term break, Miss T had a routine eye consultant appointment. This is because Uveitis can occur in children with arthritis. Miss T did get Uveitis when she was first diagnosed and needed steroid eye drops to get in under control. Uveitis can have serious devastating effects on eyesight if left untreated so regular checks with an eye specialist are vital.

We're advised to allow at least 4 hours for these appointments as she needs to see both the opthalmist and the eye consultant. Although thankfully on most occasions it hasn't taken  the full 4 hours. Sometimes they will need to put those orange eye drops in too which make the process longer. Today they didn't need to and all was fine.

Wednesday
Wednesday is Miss T's hydrotherapy day. The warm water on her joints helps with movement and as she kicks about in the water it also helps build up strength in her muscles.

As our hydro slot falls right in the middle of the day, it ends up being too much of a crazy rush to try to get to school beforehand so it does mean that she ends up missing the whole day off school. When she has her blood tests at our local hospital (which is near the hydrotherapy pool) we combine these up to be on Wednesdays if we can so that she doesn't miss anymore time off school.

Thursday
This week Miss T should be having a 'normal' day on Thursday. But I happen to have a doctor's appointment for myself and Richard needs a blood test done so there seems to be no avoiding medical appointments this week!

In the afternoon, we plan to meet up with one of Miss T's friends who also has arthritis. She is a couple of years older but they are such close friends. We were put in touch with each other by a mutual contact and it has made a world of difference to both girls to know that they are not alone going through this.

I'm not great at reaching out to others in 'support group' type situations but having seen what a great friendship has developed, I'd recommend it to everyone with a child with JIA to try to find someone else with a child with JIA to just be friends with each other. As I said, it has made such a positive diffference for them to be going through things together knowing the other faces the same challenges and difficulties.

Friday
Friday is the big day - #WearPurpleForJIA day. I'm hoping that awareness of JIA will increase. At Miss T's school they actually have class photos that day so that ruled out being able to ask the class to wear purple.

But I think anything that can be done to spread the word helps. Baking purple cakes. Talking to someone about JIA. Tweeting about it or even tweeting this blogpost. ANYTHING to help people know that CHILDREN CAN GET ARTHRITIS!

When people hear of Miss T's condition I come across stories of others who have JIA but who have had to wait a long time for diagnosis. Not only is the lack of diagnosis a huge worry and stress for the families involved but a late diagnosis can mean that the arthritis isn't treated promptly. This is turn causes huge amounts of pain for the child and can leave long term damage in their joints which can't be reversed.

I say this from experience. At age 10, I waited for a year to get a diagnosis of juvenile arthritis. By that point my hip joint had become so damaged and deformed that the only solution will be a hip replacement long before the usual age that people have hip replacements.

So please help spread the word.

I've written this not for sympathy or to 'feel sorry for ourselves'. I realise that there are many illnesses that affect children and many many brave and wonderful kids out there. This is simply to raise awareness of arthritis in children and for those who look at Miss T and think her life is 'normal' to take a moment to realise that actually it is not normal for a child's week to look like this. It is not normal to have so much time off school - whether directly for medical appointments or from being unwell due to her reduced immunity that MTX causes. It is not normal to wake up in the night screaming in pain or to not be able to walk suddenly and unexpectedly from a flare up. It is not normal to have to have a list of medication and timers set to make sure something is not missed. Miss T you are a brave and wonderful girl.

More information about JIA can be found on our page here.

We've also recently come across a wonderful facebook group so if JIA affects you, you can request to join the group. It is called "Juvenile Arthritis Parents and Families UK" and can be found on facebook.

Another charity that we recently came across is CCAA (Children's Chronic Arthritis Association) who run family support weekends away.

*Source: Arthritis Research UK; Arthritis in the UK facts and statistics 2014 (https://www.arthritisresearchuk.org/~/media/Files/Arthritis-information/Arthritis%20key%20facts.ashx)
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Family Fun at Prezzo with the La Famiglia sharing dish

We love eating out. But eating out comes with its challenges for our family. Will J cope with trying out a new restaurant? Will Miss T eat more than her usual one mouthful? Will the place be child friendly? Will there be enough choices that our family will like? Will there be too many choices leaving us confused?

And we each get something different out of the experience of dining out. For mum it's the luxury of not having to cook or wash up, for Dad it's bonding time with the whole family, for J it's being able to eat a massive dinner, for D it's being allowed a fizzy drink, and for Miss T it's dessert!

So one sunny Sunday afternoon to celebrate the end of half-term, we headed to our local Prezzo in Tunbridge Wells, Kent. There are over 280 Prezzo Restaurants around the UK so there's bound to be one near you.

We had told the kids that even though there is a great kids menu (love the fact they actually do two portion sizes for the kids menu - a children's menu and a tot's menu to cater for all sizes of appetite) that this time they were not getting to choose their own meal but we were going to have fun sharing one giant bowl of pasta. The #PrezzoLaFamiglia experience!

There are 4 different La Famiglia pasta dishes available; Penne Arrabiata, Spaghetti Bolognese, Spaghetti Carbonara and Penne Alla Rusticana. We chose the Penne Alla Rusticana which is a chicken and pasta dish with peppers and pancetta and it was huge!

The garlic pizza breads were pretty epic too. They were quite possibly the best garlic bread we have ever tasted with tangy caramelised onion and mozarella.

J's recurring question was "Can I have more?" and as there was so much of both the garlic bread and the penne the answer was "yes".


When I asked D if he thought the garlic bread was nice he responded with "No. It's delicious!"


And Miss T was also asking if she could have more "dalek bread" - I think she might have Doctor Who on the brain at the moment as we've been talking about it so much lately.

We were all definitely impressed with the portion size. Officially serves 4 although there was plenty for all 5 of us. Miss T never eats a huge amount and it normally feels wasteful getting her a meal of her own when we eat out so the La Famiglia experience really was the perfect solution to this as she could eat less and J could eat more until we were all full.

As we ate we joked about how J was like a human vacuum cleaner eating up anything and everything that others couldn't manage. Miss T was like a little squirrel with a small appetite who preferred to save some food for later. We couldn't quite decide whether D was like a keen puppy who was always there at the table as soon as food appeared wanting a taste of whatever was available, or more like a bumble bee buzzing flower to flower grazing little but often all day long.

Between us we did manage to polish off that gigantic bowl of pasta and those 2 epic sized pizza garlic breads.

On a practical note, the service was speedy. Which is great when dining with hungry kids with little patience. Sometimes restaurants make the mistake of thinking that being 'family friendly' means having highchairs and a baby changing room (Prezzo had both these) but we've found it's more about friendly welcoming staff, with a positive attitude and prompt service.

Kids are always keen to get their desserts quickly and it was literally just a matter of minutes at Prezzo. We were impressed!

The Tunbridge Wells Prezzo has a bright and airy feel to it, letting in loads of natural light. Perfect for those instagram snaps.

Another practical touch was the coat hooks I spotted around the restaurant. This is less relevant this time of year but a bug-bear of mine in winter months when we unpeel layers of jumpers and coats when dining out only to have to pile them up on our seats. It was great to see coat hooks. It made me happy.

The menu is varied and they regularly have great offers. We would totally recommend giving the La Famiglia pasta sharing dish a try next time you're visiting Prezzo. It is super-great value and super-fun too!

Here are a few more thoughts caught on video...


This post is an entry for the BritMums #PrezzoLaFamiglia Challenge, sponsored by Prezzo

Disclosure: We were kindly sent a voucher as part of the Britmums/Prezzo #PrezzoLaFamiglia campaign to cover the cost of the La Famiglia pasta dish, 2 large garlic pizza breads, 4 soft drinks and 4 ice creams. Thank you - we had a fabulous meal at our local Prezzo. 
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AniMalcolm by David Baddiel: Our review of this laugh out loud funny book out now in paperback!

The hilariously funny children's book, AniMalcolm, by the equally hilarious David Baddiel is out now in paperback. Aimed at children aged 8-11, eleven year old D was sent a copy to read and review.

Here's our Q&A style review with D aged 11:

Can you give me an overview of this book? What is AniMalcolm all about?
A boy called Malcolm hates animals, so when he gets a chinchilla for his birthday, he is not very happy about it.

He goes on a school trip to the farm and is told that a wise goat makes your wishes come true. Malcolm asks to like animals and the goat gave him what he wanted. But not in the way Malcolm pictured it...

Tell me a bit about the main characters?
Malcolm has a little brother called Bert, an older sister called Libby, his mum, Jackie, and a dad called Stuart.

Who is your favourite character?
I really like Zsa Zsa the farm cat because I think that David Baddiel really described the way cats act very well. And Zsa Zsa is a lazy show-off, which really is what a cat is like. I also really like Ludwig the pig because he is really funny and 'wise'.

Bert is also really funny because he wants to eat everything which is, to be honest, just like me.

What is the best thing that happens in the story?
I really like the re-enactment of the 'monkey moment'. When Malcolm was little, he was blasted at with monkey poo at the zoo. So when this is about to happen again with Bert, he does his best to protect him.

Which of the animals did you like best?
Like I said before, Zsa Zsa is a typical cat. But the goats are silly because they pretend the magical goat, K-pax, doesn't talk even though k-pax was talking at the time.

If you could be any animal which would you be?
I think that being a horse would be quite cool because they are strong, majestic, and fast.

But being a wolf would be amazing because they are fast, vicious, and overall epic creatures so I would definitely go for the wolf.

Did you find it funny?
Yes - all the way through it was hilarious! I could not put it down. I stayed up until nearly 11:00 p.m one night until I read the ending. (Mum: hhmmmn!!! - I had no idea he had stayed up so late reading!!!)

What age do you think this book is most suitable for (the publishers suggest aged 8-11, do you agree)?
I would recommend 8-13. It really would appeal to both boys and girls as it is just so funny.

Would you recommend this book to others?
Definitely! It was such an amazing book and I would definitely recommend it to animal lovers and even non-animal lovers.

The moral of this story is to be careful what you wish for and to be kind to everything as they have feelings too.

Thanks for such a great review, D, so pleased you enjoyed the book. 

In case you're still not convinced just what a fab book this is... here's the trailer to find out more! 




And you can buy your own copy of AniMalcolm here: (affliliate link*)



Disclosure: We were sent a copy of Animalcolm for the purpose of review. A small fee will also be paid for our time. This post contains an Affiliate link* to Amazon 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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A #Boomajump bank holiday weekend with Wicked Vision Toys

Wicked Vision Toys kindly sent us this Sonic Booma boomerang to try out. J was especially pleased as he had been given  a similarly shaped boomerang for his birthday when he was younger but it flew away and didn't come back - which he was distraught about at the time.


This one seemed particularly unique because of the noise it makes as it whizzes through the air. A kind of whistling noise. We were also pleased to find that when thrown correctly - it did come back!

It does travel a fair distance so we headed to a local playing field to try it out as our back garden isn't big enough.

There are full instructions on the back, but in summary, it needs to be thrown slightly off vertical rather than a horizontal throw that you would do with a traditional frisbee.

This is a great little toy - especially for kids that get to the age my boys have reached - that age that's generally hard to buy gifts for.

We'll need to practice a bit more with it to get a decent catching jump or #boomajump, but we had great fun playing with it at the park.

Wicked Vision toys actually have a great selection of unique toys. I'd say they would mainly appeal to older kids and even adults.

Their toys are made right here in the UK. You can find out more about Wicked Vision on their social media channels:

Instagram: @Wicked_Vision 
Twitter: @WickedVision
Facebook: WickedVisionToys

We were sent the Sonic Booma boomerang for the purpose of review. All opinions are our own honest opinions. 


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Behind every young child who believes in himself is a parent who believed first: #TearsIntoSmiles

Playing outdoors. We all know it's great for kids to get outside - get some fresh air and exercise - but the importance of outdoor play goes much deeper than that.

As parents and carers, we instinctively want to protect our children and keep them safe. Yet children need to be able to express themselves freely, to explore, to learn to take appropriate risks, to conquer some of their fears. And one of the best ways for them to learn these things is through outdoor play.

I remember listening to an incredibly inspirational speaker way back in my childcare days who described how within the home, mum and dad are in charge, at school the teachers make the rules but outdoors it's them.

The outdoor world gives children a sense of freedom that is unrivalled. 


This in turn helps them with learning independence, enhances creativity, they learn to take calculated risks and they navigate themselves over, through and around obstacles - whether they be trees and branches to climb in the woods, or play frames and slides at the park.

They will feel closer to nature and benefit from the movement and exercise they get from being outdoors.

Of course we still need to be there to keep them safe and encourage and reassure. Spending more time outdoors will inevitably mean the occasional cut, scratch or graze.

For those minor bumps and scratches understanding and sharing their hurt seems to help my children. Rather than saying 'don't be silly' or belittling the pain they are experiencing, reassuring them by saying that 'I know it hurts but it will get better' helps them feel hopeful that the pain will pass.

Reminding them of their achievements often brings a smile through those tears.

"wow - you managed to climb the big climbing frame yourself today - I'm so proud of you!"


Distraction can also help. I remember when my son was younger he would want to show granny every new scratch and cut. It soon became a way of distracting him when he had a tumble: "We can show that graze to granny next time we see her".

Characters on Elastoplast plasters have also proved to be a great distraction technique. Especially for a massive Star Wars fan like Miss T. We've written about just how much she loves Star Wars here and here, so having to make a decision about whether to choose a Chewbacca plaster or a Darth Vadar one quickly occupies her mind more than the reason she was crying in the first place.

Not only have these Star Wars themed Elastoplast plasters proved invaluable for outdoor play, but every week on a Friday something unavoidable has to happen in Miss T's life. She hates it. In fact, Fridays are the worst day of the week for her.

Each and every Friday she needs to have an injection of Methotrexate to keep her juvenile arthritis under control. It hurts. We do every thing we can to minimise the pain but because the injection is subcutaneous (under the skin) unlike a blood test for example, things like EMLA cream or cold spray don't help. We do use a cold compress beforehand. We try to distract her with books and games and jokes. But there's no getting away from the fact that it hurts.

The medication itself is also cytotoxic (cell-killing) so if it was to spill onto skin it would harm her skin cells so it's important to have a plaster at the ready to prevent any of the medication oozing out once the injection is done.

Having tried all sorts of distraction methods without too much success, we decided to try letting Miss T choose her plaster as a distraction technique last Friday and then using that plaster straight after her injection.


It worked. Her tears soon turned into smiles. Thank you Elastoplast. 

Elastoplast have made an amazing video showing children's tears being turned into smiles. We love it. See what you think of their #TearsIntoSmiles video:


This post is an entry for the BritMums #TearsintoSmiles Challenge, sponsored by Elastoplast.

We weren't quick enough to get sent the kit with plasters but, knowing what a big Star Wars fan Miss T is, we already had these Elastoplast Star Wars plasters in our first aid cupboard.

Title quote by: Matthew L. Jacobson
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Dinosaurs may be extinct from the face of the planet, but they are alive and well in our imaginations (and at Mr. Mulligan's Dino Golf).


Having grown up in cosmopolitan and colourful Brighton, when I first moved to Kent I found it rather unremarkable in comparison. But in recent years, things have come a long way. Once upon a time it was near impossible to find a coffee shop on Tonbridge high street, the town now boasts too many to count.

The industrial estate used to be just that, industrial. But in recent months we've seen a new indoor trampolining centre, Jump in, arrive, as well as a new M&S food store, a revamped Halfords, and a brand new shiny Mcdonalds - much to the kids' delight.

And most recently we've seen the arrival of Dinosaurs! Yes dinosaurs. In the form of Mr. Mulligan's Dino Golf.

The kids have been nagging to go since they saw the site being built and it's been a delight to be able to try out the new 18 hole dinosaur themed adventure golf course.

We booked in for an evening session after school as it's open daily from 11am until 7pm on weekdays. Weekends tend to be busier and it opens from 9.30am. Do check in advance before your visit as opening times may vary depending on the season.

Our kids are aged 5, 11, and nearly 13 and all three thought this place was fabulous!

A lot of effort has gone into making this place look great with all the dinosaurs, planting and other features like the helicopter wreck and safari jeep as well as a water feature which has a raft on a pulley system to cross it.

We found ourselves laughing at each others effort, cheering each other on and celebrating when D managed to get a hole in one!

Miss T seemed to think that the more shots you took at the ball, the higher your score and the more chance of winning - we didn't correct her as she was having so much fun chasing the ball around and hitting it again and again. She was given a smaller size club than the rest of us which was perfect for her to use.

We each seemed to have a different favourite hole - I loved the water-jump one where you had to hit the ball over the water to the other side where the hole was.

Daddy's fave was the three tunnel hole as he somehow managed to get it into one of the tunnels on his first attempt and then finished the hole with just one more shot.



D couldn't believe his eyes when he got a hole in one through Triceratops' rib cage. Awesome!

The final hole, hole 18 is quite a challenge as you have to get the ball up a hill to the hole.

Our session took just over an hour but I'd imagine you'd need to allow longer during busy periods as you may need to wait between holes. The prices are reasonable in comparison with other similar attractions. There is a party room available for birthday parties and although there is no cafe at the actual Dino golf venue, Tonbridge Golf Centre just next door does have a cafe (and of course a certain burger chain with golden arches can also be found very nearby too).

We were very impressed with Mr. Mulligan's Dino Golf and I have a feeling that we will be back again very soon.

You can find out more about Mr. Mulligan's themed golf centres here and more specifically about Dino Golf in Tonbridge here.  Keep an eye out for their latest news including their special LAUNCH PARTY on 29th May 2017 on their facebook page.

Disclosure: We received a complimentary family ticket to Dino Golf for the purposes of review. All opinions are our own honest opinions. 

Title quote attributed to Steve Miller: "Dinosaurs may be extinct from the face of the planet, but they are alive and well in our imaginations" 



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