When your child is diagnosed with epilepsy.

At the point of diagnosis Bam was having about 10 seizures a day. He would suddenly lose consciousness and fall to the floor. We would then have that agonising few second wait (which felt like much longer) for Bam to come back to us. It’s really scary seeing your child unconscious, not knowing how long the seizure will last for. I felt helpless.  When the seizure finished all I wanted to do was hold him tight but that’s the last thing he wanted. He was confused, tired and disorientated, he needed time to recover.

We realised shortly after diagnosis that Bam was also having absence seizures as well as drop down seizures. My poor boy was having several seizures per day leaving him confused and exhausted.

I desperately wanted to know more about epilepsy and how I could help Bam. There’s so much information out there but I found it very overwhelming and confusing. For a start there are over 40 different types of seizure!

When Young Epilepsy asked me to blog about their new guide on childhood epilepsy I was keen to help. I’m pleased to say it’s pretty impressive! I wish this was available when Bam was diagnosed. It has everything you need to know from details about the different types of seizure through to the medications that are available.

Personally I found the section on the impact that epilepsy can have on learning and behaviour of particular interest. Bam has Attention Deficit Hyperactivity Disorder (ADHD) in addition to epilepsy. I had no idea that 20-40% of children with epilepsy also have ADHD! The guide also explains how children with epilepsy can be anxious, find they have a lack of independence, a low self esteem and a lack of confidence. So it’s not just about the seizures….

The Young Epilepsy guide talks through each of the issues that children with epilepsy can experience and how parents can help their children manage these challenges. I highly recommend this guide to other parents of children with epilepsy, it’s informative and easy to read.

Finding out your child has epilepsy is tough. Having information such as the guide that Young Epilepsy has published is really helpful. It’ll help guide you through what sometimes can be a tough journey.

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New year’s resolutions!

Happy new year… I’m sure I’m not the only one that is feeling tired today.  After a night of partying with friends and the kids it’s feels like it’s the longest day EVER. A fab night was had by all but I’m now sitting here wishing the kids bedtime to hurry up so I can go to bed too. We’re nearly there, aren’t we?

New year is always a time for reflection and a time to think about plans for the future. I don’t make new year’s resolutions as such but I do try to think of a few things that I’d like to achieve.  This year I am kicking the year off with a half marathon on the 22nd January. I also have plans to travel. Unfortunately not travelling around the world for weeks on end but at least a visit to a place that I have always wanted to go to rather than the cheapest package deal we can find in the outrageously expensive school holidays.

Out of interest I asked my boys about their new year’s resolutions. Bam’s response was to eat more chocolate. Good call Bam, life’s definitely better with chocolate. I did have a chuckle that while most people in the world are making promises to eat less, his is to eat more! He then followed up with ‘and I want to help people, more than I already do’. That’s my boy, he has a very kind heart.

Mops’ new year’s resolution is to go to more water parks (random!) and to have more money. Apparently he wants ‘better stuff’. I wonder what ‘better stuff’ means to a five year old?

Whether you make new years resolutions or not, I wish you all a very happy and healthy 2017! Is it bedtime yet…..zzzzzz!

Life in the fast lane…

I’ve been reflecting recently on the family life that Mops, my youngest boy, is part of. Life is very chaotic, loud and active. For him life has always been like that so I wonder if he actually realises his life might be ever so slightly different to his friends in the classroom?

He knows all about Bam’s conditions and how they affect him. He’s very open about them and will chat to his friends about it. He’s adapts brilliantly to life with Bam. He’s so patient, much more patient than anybody else living in our household! Even if he has to ask the same question to Bam five times over, he’ll do it and persevere. I wonder if that’s because he knows he needs to be patient or because that’s his normal.

I often wonder that as Mops gets older, he’ll begin to realise how he adapts to living with a brother with ADHD and epilepsy. Does he enjoy charging around all of the time with his brother, climbing trees, scooting, generally living life in the fast lane or is he wondering about the next time he’ll get to sit and relax? I suspect it’s probably a little bit of both!

This weekend I took Mops out for some lunch, just him and I. So as we sat in Subway munching on our sandwich creations we chatted about school, play, friends etc. It was as we were walking through town I asked Mops if he had enjoyed his lunch. His reply was very simple but very powerful ‘Yes Mum, I have, it’s been very relaxing!’ So he does like a bit of down time, just to sit, just to chill, just to be able to eat a sandwich rather than gulp it down.

He’s still very young (5) but I wonder how he’ll handle family life in the future. I have a feeling he’ll adapt, just as he always has. Love you Mops for everything you do and I know Bam does too.

A night on a tiny island!

I’m not really a camper. Don’t get me wrong I absolutely love being outdoors but I like to go home to my bed in the evening.

I have only been camping once as a girl guide. This experience ended with me waking up in the morning to find myself outside the tent in the middle of a very wet field. Unfortunately, I was sleeping by the tent door, there were six girls in the tent and when one rolled over we all rolled and I fell out! Quite funny when I look back now but at the time I told my Mum I would never ever go camping again! (dramatic, I know!)

And I haven’t been camping again..until this weekend. You can imagine my Mum’s amusement when my boys told her we were off camping on Brownsea Island!

Brownsea Island has been on my list of places to visit for quite a while now. The island is largely owned by the National Trust. As National Trust members, I’m often looking at their website to plan our next adventure. Brownsea Island promises beauty, peace and fun. The island is small, about two-thirds of a mile by 1 and half miles. There are no cars or shops on the island apart from the National Trust shop and cafe, which both close at 5pm.

With no plans for the Summer Bank Holiday, I thought I’d check out Brownsea Island. Whilst browsing the website I spotted an advert inviting families to camp on the island- tent and cooking facilities provided! So only sleeping bags, clothes and crockery needed! Sounds simple enough? Hmm, a night on an island…sounded like an opportunity not to be missed, so we signed up!

With everybody loaded up with a bag full of stuff, we headed off on our adventure! As soon as we set foot on the island I was immediately struck by its beauty.  As we walked from the ferry port to the campsite on the other side of the island (without the bags, the lovely National Trust staff transported them to the campsite for us!)  it became apparent that this was indeed a very special island. An island steeped in history, bursting with beauty and an amazing amount of different wildlife. We spotted the famous Brownsea red squirrels, deer and peacocks. There were lots of other birds too but my boys make far too much noise and move far too quickly for us to be in with a chance of spotting any!

We arrived at the campsite, erected our tent and got out the burgers!! There’s something magical about being on the island after it closes. Although I have to admit I was slightly nervous about being on an island with no way of being able to get off apart from a very chilly swim!

It was a lovely warm evening so we  took the boys to the beach while we sipped on a glass of wine and watched the sun go down and the stars begin to sparkle! A perfect,relaxing evening!

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Thank you, National Trust for giving us access to this beautiful island and for helping our family to have a truly memorable time!

Oh and the night in the tent, well it was ok – I don’t think I’ll become a seasoned camper but I would do the odd night here and there!

Super powers…

Last week I was fortunate enough to spend a week on holiday with my boys and enjoyed some proper family time. Away from the laptop, household chores and the general routine of life.

Whilst on holiday I was really struck by the boundless amount of energy Bam has. I know he has always had lots of energy but after spending a week with him it’s clear that boy is actually a Duracell bunny!

I watched him effortlessly climb large sand dunes in hot temperatures whilst the rest of us plod up the dunes, resting along the way!

I have watched him climb a small mountain in minutes. We’re still at the bottom while he’s nearing the top.

I have watched him run over and over into the waves, jumping each one enthusiastically.

And, whilst the rest of us have taken advantage of a lay in, he’s up pottering around eager to start his day.

I’m in awe of the energy that he has and I hope in the future he uses it wisely. It’s a super power that if used well could be a platform to a successful future.

Mind ‘crammed’ fulness

I’m dragging myself and my boys through the last few days of term. I think dragging is a good term because that’s what it feels like. I don’t want to get up to do another school run, they don’t want to get up either, everyone’s tired and everyone’s fed up!

Nobody prepares parents for the end of school mayhem, the pure exhaustion and the daily occurrence of tantrums and tears (mine and theirs) that can push even the most calm parent to their limits!

My mind is so crammed full I’ve found myself in some amusing situations this week. Yesterday I diligently made packed lunches for my children the night before they required them, only to find the next morning the lovingly made sandwiches were not in the fridge. No, they were in the pan drawer, all sweaty and horrible! Why on earth I put them in there I do not know! I have no recollection of doing it!

And then there was misplacing my car. So I drove to school, got side tracked and walked home. Only to arrive home to an empty driveway – ooops, I left the car at school! At least I didn’t leave the child at home!

It’s very clear that my mind is full of who needs to be where when, who has an end of year party, who is in a school play as well as making sure every teacher that has supported my boys over the past year is presented with a gorgeous thoughtful gift!

While my mind is full, Mops is an emotional wreck! His first year of school is over, he’s exhausted. In fact every time I speak to him he cries. At night he cries because he loves his teacher so much he doesn’t want to be taught by somebody else next year.

Bam on the other hand is bursting, literally bursting with energy. ADHD and end of the school year are not the best combination! He’s bouncing around thrilled that the school holidays will soon be here and he wants to share with the world how happy he is!!

So to all the other parents out there that are experiencing end of term ‘mind crammed fullness’, we’re nearly there! Just a couple more days to drag the family through then no more school runs, school uniform, homework and after school clubs for a whole 6 weeks! That’s got to be something to look forward to!

 

 

 

 

 

ADHD – the bright side

We often hear of the challenges of raising a child with ADHD but what are the positives? Here’s my top 5…

  1. Boundless amounts of energy. Energy for running, energy for exploring outdoors and energy for helping Mum (well, he may have the energy for helping Mum but it may not always materialise!) Bam does run with me. I love having him as my running buddy, we really enjoy our running chats – although he is able to chat a lot more than me! We also both share a love of the outdoors. Bam loves climbing trees, exploring and camping. Move over Bear Grylls.
  2. Lots of fun and humour! There are plenty of opportunities to let loose and just roll with the chaotic lifestyle that we lead.
  3. In-depth knowledge on a few topics of interest. Bam reads lots of fascinating fact books – from the Guinness book of records to books on planet earth. He’s an avid reader of books at night so much so that whilst changing his duvet the other day I managed to find 14 fact books buried in there -not sure how he finds the room to sleep. He’d make a great addition to a quiz team I’m sure.
  4. Creative. Bam has the most amazing adventures. He doesn’t just go for a walk in the woods – it’s a bear hunt, a Gruffalo hunt, a  pirate adventure. The list is endless.
  5. Last, but most certainly not least, one of the absolutely best things about my boy is he’s absolutely oozing with love. He has the most wonderful caring side that when revealed it totally and utterly melts your heart!

There are many more positives too…I’m proud of Bam and everything he achieves. I have high hopes for that boy. After all,  Albert Einstein is reported to have had ADHD!