Hugh’s epilepsy has been a major factor in his life for as long as I can remember.

His first obvious seizure happened at around 10 months but it’s highly likely he was having seizures before this; he was already undergoing investigations for epilepsy due to the fact he was losing skills and regressing in some areas of his development and his brain MRI had flagged up that seizures would be highly likely.

When the epilepsy diagnosis came, when he was just over a year old, I assumed it would easily be controlled and that life would return to normal. Instead I discovered that Hugh was one of the 30% of people who never control their epilepsy through drugs alone. We tried 6 or 7 different anti-epileptics drugs in varying combinations but eventually it became clear that Hugh was in the category ‘medically intractable’- the drugs don’t work.

We tried the ketogenic diet next and the success of this was astounding; within weeks his seizures drastically reduced. We started going out as a family again, we even managed a holiday to Wales, things that were impossible when his seizures were at their peak. Hugh remained on the ketogenic diet for three years but seizures started to creep back in. Thankfully though, never to the degree they were before we started the diet.

The next course of action in trying to control Hugh’s seizures were surgical options – either brain surgery or a Vagus Nerve stimulator Implant.  An MRI of Hugh’sbrain couldn’t find a single point from which his seizures started (his whole brain is affected) therefore he wasn’t eligible for brain surgery.  Instead, we opted for the VNS.

Vagus Nerve Stimulation (VNS) is a treatment for epilepsy where a small device is implanted under the skin in the chest.

This device, similar to a pace-maker, is called a generator. The generator is connected to a thin wire, which stimulates the vagus nerve in the person’s neck at regular times throughout the day. This sends impulses to the brain, which helps to prevent electrical activity that causes seizures.

We were told at Hugh’s pre-operative assessment that about a third of patients see significant improvements, a third some improvement and a third it makes no difference at all.  Side effects, other than those associated with a general anaesthetic are apparently minimal and include intermittent hoarseness and difficulty swallowing while the device is sending electrical impulses.

The surgery to fit the VNS was relatively straightforward and Hugh was discharged the following day with a dressing on his neck and another on his chest.  At no point during the surgery, does the surgeon operate on the actual brain.  Hugh recovered quickly and needed minimal pain relief over the following days.  Although the scar on his chest is a raised keloid scar, the one on his neck is bravely visible. Two weeks after surgery we returned to hospital for the device to be turned on.  This was all done electronically with a large ‘wand’ held over the device in his chest and it was all programmed through an iPad.

Over the coming weeks and months, the settings were tweaked and adjusted to try and get the best seizure control.  The length of time between the impulses sent to the brain can be adjusted as well as the strength and duration.  In addition to the automatic impulses from the device we have a magnet which we can swipe over the generator in Hugh’s chest to give a booster impulse at the start of the seizure, with the intention of interrupting the brainwaves and stopping the seizure or reducing the severity or duration.

We were warned that it may take time to see an improvement in Hugh’s seizure control and initially I was worried it had made them worse.

The frequency increased but thankfully they were less severe and didn’t require hospitalisation as often.  With time though, the frequency reduced too and we began to get longer and longer gaps between significant seizures.

After less than three years the battery on the VNS ran out, which was much quicker than we expected. The replacement surgery was quick and the recovery even quicker than last time.  And the bonus was that Hugh was fitted with the newest VNS device which has an ‘auto-stim’ feature which automatically sends an impulse to the brain when it detects an increased heart rate which could indicate the start of a seizure.

Hugh has had a VNS in place for four years.  He is not completely seizure free but we have had amazing success: It’s been one whole year since he’s had a major seizure, 16 months since he last needed rescue medication and over two and a half years since he was lasted hospitalised for seizures and needed IV drugs.  For a child that was averaging hospital admissions every three months, that’s a great result!

When the world suddenly went a bit mad back in early March and we were all confined to our homes, the future looked bleak and scary.

As we gradually move towards a ‘new normal’ and restrictions ease, I’ve been contemplating the lessons learnt and how simple changes could have a long-lasting positive impact on families like ours- those living with profoundly disabled and medically complex family members.

Greater flexibility around appointments

Previously, hospital appointments for Hugh have taken at least half a day.  He either misses a morning or an afternoon of school, and often it involves me arranging someone else to pick up or drop off my other son.  I have to drive into the city centre, find an accessible parking spot reasonably close to the hospital and hope that someone doesn’t ignore the massive ‘please leave space for a wheelchair’ sign and park directly behind me.

Frequently though, on return to the car, I’m forced to leave Hugh on the pavement while I manoeuvre out of a parking space and then load his wheelchair into the van in the middle of the road!

The hospital causes Hugh immense stress and even with ear defenders and toys that help calm him, he ends up anxious and upset fairly quickly. Sometimes, kind nurses take pity on us and move us to a side room or a quiet corridor, other times I’m left hot and bothered trying to distract him and keep him calm.

If the appointment is running to time this might *only* be for 20 minutes, but there are other departments where we’ve waited hours and I’ve ended up leaving to walk around the block and asked to be telephoned when our turn is near.  I refuse all but the absolutely necessary examinations now – too many medical interventions over the years have traumatised Hugh to the extent that he mistrusts medical professionals.

Since the start of the pandemic though, Hugh has had many appointments carried out over the phone or via video call.  This takes much less time and is far less stressful for both Hugh and I.  Of course, some appointments can’t possibly be carried out this way – he’ll need a spinal x-ray soon and will definitely need to go to hospital for that.  Yet, for the relatively routine appointments, surely video calls or telephone calls would save a lot of time, money (parking and fuel costs) and frustration.

Flexible education placements

Hugh has thrived in lockdown.  He has been much healthier, has slept better and his seizure frequency has decreased significantly.  From speaking to other families, I know that we are not alone in this.  Partly, I assume, it is due to the dramatic reduction in bugs and germs he is coming into contact with.

However, I think it is also due to the fact that he is getting enough sleep.  Hugh’s sleep pattern has always been erratic and after being awake during the night, he is often ready to go back to sleep just as it is time to get up for school.  This means, while Hugh falls asleep, we are giving him medications, dressing him, loading him into a wheelchair and putting him on to the bus for school.  Often, he’ll wake to find himself in a standing frame or on the floor of the classroom about to start physiotherapy.

During lockdown, he has chosen to go back to sleep – he’ll shout at me if I try to get him up earlier than he is ready – and in turn I have been able to allow him that time.  When he wakes later, he is happier, more engaged and more ready to learn.

For children like Hugh, it is not simply a matter of going to bed earlier to ensure he gets enough sleep.  Even with medication, his sleep is unpredictable.  The knock-on effect of being chronically tired is an increased susceptibility to illness and an increase in seizures.  Hugh’s school attendance is shocking as a result.  He rarely manages two full weeks at school without getting a cough or a cold and is often ‘seizurey’ or out of sorts or just plain exhausted.

There is an expectation for all children to attend school 5 full days a week.  Perhaps a more flexible approach would work better for some children, with shorter days or less days a week.  Hugh benefits greatly from going to school and home-schooling isn’t what I want for him long term, but perhaps thinking creatively about the hours he does would ensure he gets more from the time he is there.

Looking out for others

When lockdown began, there was a definite feeling of ‘we’re all in this together’ and I think, for the most part, people looked out for each other.  Those who could get out to shops, were acutely aware of those who couldn’t – the over 70’s and those shielding.  People reached out and offered help to those who needed it.  Facebook support groups sprang up, with communities coming together to help vulnerable people in their area.  For all the fear and worry around the pandemic, it was comforting and reassuring to see how people could pull together and support each other.

The outpouring of love for the NHS staff, the appreciation for the delivery drivers, the shop workers and the bin collectors – a realisation that these are the people we need to keep our country running.

Wouldn’t it be great to see that continue – that support for our fellow neighbours, that appreciation for the people who continued to work each day when much of the country stayed at home?  It shouldn’t take a pandemic for us to appreciate others, it shouldn’t take a country in lockdown for us to realise that our friends and neighbours need our help.

For some people the end of lockdown doesn’t stop the isolation and fear. They still need your love and support.  Give them a call occasionally, ask if they need anything from the shops, check that they’re not feeling lonely.

These relatively simple and easy to implement changes could really help support families who juggle the challenges of complex medical needs.  So now, as restrictions begin to ease, instead of going back to the way things were, wouldn’t it be great to move forward and use what we have learnt in these unusual times.

My go-to life mantra is to

Hope for the best,

Plan for the worst.

Potentially a bit pessimistic sounding I realise.  However, I find that I can cope better with emergencies and challenging situations if I’m as prepared for them as possible. Over the years we’ve had more than our fair share of emergencies and life-threatening situations; At 9 months old, Hugh developed a rare form of epilepsy that caused him to stop breathing for extended periods of time and required us to resuscitate him either with a bag and mask or through mouth to mouth.

My instinct initially was to cocoon ourselves in the house and never leave (except by ambulance) but that was no way to live. Hugh’s life threatening apneoas happened regardless of where we were – at home, in a car park, at a friend’s house, so if I ever wanted to leave the house again, I had to work out a way of doing it as safely as possible.

I planned for every emergency- where we’d pull in to resuscitate Hugh if he stopped breathing in the car, safest routes to take for an ambulance to get to us easily. I risk assessed every single situation and always had a back-up plan.

And so cautiously, carefully, we began to step out into the world; to try things, to do things, to start to live again.

We even went on holiday (in the UK), choosing a destination based on its proximity to a decent A&E.

This constant risk assessing and planning how to manage medical emergencies is second nature now. The first thing I did, when getting a new Apple Watch for my birthday a few years ago was to check if I could use it to call an ambulance from the back of the van. (I can).

All our plans are adapted, changed and cancelled dependent entirely on Hugh’s health needs, but we continue to take calculated risks and always hope for the best. That way we can ensure that we’re not controlled by fear and that Hugh (and the whole family) can continue to live as full a life as possible.

Transitioning out of this period of shielding, reminds me a lot of those early days of adjusting to the new, terrifying knowledge of Hugh’s life-threatening condition.  How do we try and live life to the fullest without being controlled by fear?  For me, that’s to fall back on my own mantra – hope for the best but plan for the worst.

As always, we’ll risk assess and plan and make decisions based on the needs of the whole family whilst being mindful of Hugh’s health.  We’re even hoping to go away for a week to a lovely accessible cottage by the sea. (It is, of course, near a hospital!)

disease:

NOUN

A disorder of structure or function in a human, animal, or plant, especially one that produces specific symptoms or that affects a specific location and is not simply a direct result of physical injury.

(Oxford English Dictionary)

When I was pregnant with my second child, I had a condition called polydramnios, which meant I had too much amniotic fluid.

My skin was incredibly sore and stretched trying contain the enormous bump and I looked utterly ridiculous at just over 5ft with this gargantuan ball for a belly.

I developed gestational diabetes (as I had with my first) and, despite my best efforts to control them with diet, my blood sugars were unpredictable.  As a result, I was closely monitored and had regular scans.

The doctors decided to run some tests on account of the uncontrollable blood sugars and the excess fluid to rule out some possible causes, including infection and foetal abnormalities.

Tests for infection proved negative and I was told there was nothing wrong with the baby – scans had ruled out swallowing difficulties and chromosomal abnormalities apparently.

I breathed a sigh of relief. My baby was fine.  (And I began injecting insulin for the erratic blood sugars).

A few weeks later my beautiful son, Hugh, was born, weighing in at 6lb 7oz, thankfully unaffected by the unreliable blood sugars.

Following a 9-day stint in the neo-natal unit for pneumonia, he was discharged as a healthy, typical baby.

Yet, it wasn’t long before I began to have doubts about this ‘typical’, ‘healthy’ boy.  There was just 14 months between him and my first born and the differences between them were stark.

Despite others trying to allay my fears with reminders that all babies are different, there was a growing disquiet within me.  I knew, deep down, that something wasn’t quite right.

Yet, never in a million years, did I suspect he had a rare disease.

I’m not sure what I thought the doctors were looking for when they began testing him.

He was 6 months old, by now fairly obviously delayed in his development, and with a head circumference that was dropping off the growth charts.  He was sent for x-rays and blood tests and an MRI.

My initial unrest became full blown panic as I realised I was no longer the only one that thought there was something ‘wrong’ with my child.

However, in amongst all my worries and fears, I never considered he might have a rare disease.

I never considered he might have any sort of disease.

Maybe the word as commonly used, doesn’t quite match the dictionary definition.

Disease.

It makes me think of something that would make you itch; Measles, or Chicken Pox. It sounds like something you can catch from someone else.

Technically though – as the definition above points out – it’s simply a disorder that produces specific symptoms. And a rare disease, obviously, is one that doesn’t occur very often.

Hugh’s symptoms were microcephaly – a smaller than average head circumference, hypotonia – low muscle tone, i.e. a bit floppy, reflux, visual impairment and feeding difficulties.  He later developed epilepsy.

When he was around 7 months old, the blood tests led us to discover that Hugh had a chromosome abnormality.  It wasn’t straightforward so didn’t lead to a diagnosis as such.

But we did know his condition was genetic and we knew he couldn’t outgrow it. Hugh had a disease so rare it was yet to be diagnosed. Apart from that, we knew very little else.

I didn’t know then, that not having a diagnosis was an actual ‘thing’.  I genuinely thought we were alone in the world, having an undiagnosed child.

Which is ridiculous since approximately 6,000 children are born every year in the UK with a condition (or disease) so rare that it is undiagnosed.  But no one thought to mention that point to us.

We felt isolated and scared. Without a diagnosis, I felt unable to reach out to the local support groups which seemed geared towards specific conditions.

We didn’t fit anywhere. I didn’t know where we belonged.

Thankfully, shortly after Hugh turned 1, I found SWAN UK, the only group supporting families of undiagnosed children.

Things started to fall into place then.  I finally found others with children, like Hugh, who were still searching for their diagnosis.

I realised we weren’t alone at all and I made friends with other families and had people to turn to for the advice and support and information I’d been craving.

To be classed as a rare disease (in Europe), a condition needs to affect less than 1 person in every 2000.

However, there are between 6,000 and 8,000 known rare diseases and 7% of the population will be affected by a rare disease at some point in their lives.

That is equal to 3.5 million people in the UK or 30 million people across Europe.

Rare diseases aren’t actually that rare at all.  Individually they’re rare, but collectively they’re quite common.

That’s a much less isolating position to be in.

Hugh has very recently had a diagnosis.  It is a rare disease affecting at least 350 people worldwide, with new cases still being diagnosed.

It’s called FOXG1 syndrome and explains all of his symptoms and lots of the little quirks that make him Hugh.

There’s an online community of families across the globe each with this same rare disease as Hugh.  I’ve just started reaching out and I’m finding support and information here too.

We spent over 7 years searching for the elusive diagnosis and, to be honest, it’s quite a relief to get one; to finally know the cause of Hugh’s difficulties.

However, with so few people diagnosed with FOXG1 syndrome, we’re still very much part of the rare disease family.

© www.LittleMamaMurphy.co.uk

St. Valentine is actually the Patron Saint of epilepsy.

So, in honour of that, here’s some facts about St. Valentine and about epilepsy that you might not know.

1) Saint Valentine isn’t the only Patron Saint of epilepsy.

Other Saints include, St. John the Baptist, St. Christopher and St. Dymphna.

2) There are conflicting theories as to why St. Valentine is linked to epilepsy.

One is that in the German language the words, ‘Valentine’, and, ‘fallen’, sound similar and for many years epilepsy was known as the, ‘The Falling Disease’.

In German speaking countries epilepsy became commonly known as ‘Saint Valentine’s illness’.

Yet, in other, non-German speaking areas the link between Saint Valentine and epilepsy was not so strong.

In France, for example, it was known as, ‘mal de Saint Jean’, and in Anglo-Saxon countries, particularly Ireland, as, ‘Saint Paul’s disease’.

3) Another theory is that St. Valentine cured someone of epilepsy – a young woman who was engaged to be married.

4) There are a number of references to epilepsy in the Bible:

In one instance Jesus is described as healing a boy with epilepsy by driving out an evil spirit.

It has been suggested that Paul (or Saul as he was known at the time) suffered an epileptic seizure on the road to Damascus – “And suddenly a light from heaven shone around him.  

And falling to the ground, he heard a voice saying to him, “Saul, Saul, why are you persecuting me?”  

And he said, “Who are you, Lord?”

And he said, “I am Jesus, whom you are persecuting.

But rise and enter the city, and you will be told what you are to do.”  

The men who were travelling with him stood speechless, hearing the voice but seeing no one.”

And for three days he without sight.

(See Acts 9)

St. Paul himself refers to his ‘physical ailment’ in his letters; this is thought to be a reference to epilepsy.

5) Epilepsy has a history dating back at least 4000 years.

The ancient Egyptians, Hindus in ancient India and the Aztecs and Incas in Central America all linked seizures to their respective gods/idols.

With no other explanation for epilepsy, the ancient people believed that gods inflicted epilepsy on people and had the power to cure it.

Epilepsy was often thought of as an evil spirit or a demon possessing a person.

6) The Greek philosopher Hippocrates (460-377 BC) was the first person to think that epilepsy starts in the brain.

7) There are about 40 different types of seizure and a person may have more than one type.

8) In the UK, 600,000 people, or almost one in every 100 people, has epilepsy.

9) Epilepsy can affect any one, of any age, race, gender or social status at any time in their life.

10) Only 52% of people with epilepsy in the UK are seizure free. It is thought that with the right treatment this figure could rise to 70%.

I could barely function in the day time without copious amounts of coffee to keep me going.  The nights seemed incredibly long and drawn out.

The baby books would remind that it was just a newborn phase and friends would assure me it wouldn’t last forever.

I remember my mum telling me to make the most of those nights, for they’d be over soon and I’d come to miss them. I wasn’t sure I believed her, but I tried to make the most of those times.

The middle of the night/early mornings when the rest of the world was asleep; just the two of us, snuggled together as he hungrily fed for what felt like the hundredth time.

It felt quite magical at times and despite feeling permanently shattered, I was confident that he’d outgrow it eventually.

He didn’t sleep through the night for a long time and just as he started to, his little brother arrived.

Hugh was born when Sean was just 14 months old but him waking up for feeds was the least of my worries. Hugh had reflux and could projectile vomit across the room.

My night times became even busier, catching puke, mopping floors and trying to stop him choking on his sick.

By the time he developed epilepsy at 9 months and would frequently stop breathing in his sleep, I’d more or less forgotten what sleep was.

For the first few years of Hugh’s life, I rarely slept deeply.  I cat-napped and I dozed with him beside me so that if he stopped breathing I could resuscitate him.

Truth be told, with a wilful toddler in the house as well, I’m not sure how I survived. I’m not sure how any of us did!

We’ve come a long way since those early days. Yet I’m still up frequently in the night to deal with the myriad of issues that arise when you have a child with complex medical needs.

Bed time starts around 7pm for Hugh – he ‘asks’ to go to bed by rubbing his eyes and pretending to be sleepy, but he really just wants to spend time in his bedroom with his bubble tube and his fibre optics.

8pm is his official bedtime though. I set up his overnight tube feed and give him a cocktail of medicines for epilepsy, reflux, constipation and to help control his secretions.

I then spend about 15 minutes wedging him into his specialist sleep system which helps keep his spine straight and prevent his scoliosis developing further.

Next, it’s time to attach his SATs monitor to his little toe. This monitors his oxygen levels and heart rate overnight and will alarm if his oxygen levels drop to low, indicating that he’s stopped breathing during a seizure.

By about 8:30 he’s ready to sleep and he uses his little button with ‘goodnight’ recorded on it to say goodnight to everyone in the house.

Usually he falls asleep pretty quickly, but if not, I give him melatonin to help him nod off.

It’s the staying asleep rather than the dropping off to sleep hat seems to be the problem for Hugh and he will wake frequently throughout the night.

I can give up to two doses of melatonin over the course of the night to help him drop off to sleep again if necessary and I’m regularly drawing up medication at 2am.

Seizures are another thing that wake him, and us, and although thankfully they aren’t all ones that require us to resuscitate him, we do sit in with him and use his vagal nerve stimulator to try and help the seizure stop and to improve his recovery.

Other reasons he wakes are due to pain from reflux, wanting a change of position and for various reasons I can’t fathom but often involve lots of tears.

Hugh’s non-verbal so working out what’s wrong can take a lot of guess work. He’s developed sleep apnoea recently and so his SATs monitor will alarm for those – often waking him.

We also get false alarms where it can’t detect his heart rate, again waking us and Hugh. And when Hugh wakes and wriggles his toes a bit too vigorously, it will also alarm for that.

Each time the alarm goes off, I jump out of bed, heart pounding – any one of these alarms could mean he’s stopped breathing completely and needs resuscitating.

Sometimes this is the case and of course then, being awake at 4am is a minor concern. However, for every one genuine alarm, there are many, many more times when he’s (thankfully) absolutely fine.

Yet, I then return to bed with a racing heart and adrenaline coursing through my veins and have to try and get back to sleep before I need to get up again.

I have a bit of a love-hate relationship with the SATs monitor – I completely rely on it to keep my son alive and it has, without a doubt, saved his life many times by alerting us to him stopping breathing.

However, when I’ve been woken by it unnecessarily for the 7th time in a night, I could happily throw it out of the window.

That said, I’d still take all the false alarms, knowing that it will wake me when Hugh does really need my help.

I bought a Fitbit to track my sleep and heart rate and discovered that not only does my heart beat ridiculously fast when I should be sleeping, but also, I rarely sleep for longer than an hour at a time.

The sleep graph looks more like a bar code there are so many periods of restlessness and awake times punctuating the navy-blue section depicting deep sleep.   It’s no wonder I wake some mornings feeling like I’ve not been to bed.

On my days off, I tend to go back to bed after the boys have gone to school, when I’m working though, I have to power through the day on coffee alone.

I realised recently that I’d been having sleepless nights for 9 years! So much for it being just a new-born phase eh?

Having said that, I do try to bear in mind that maybe one day, he won’t be here and I’ll miss being needed in the middle of the night.

And I confess, when he’s wide awake and giggling at 2am, I can’t help but join in.

The relationship between them is not what you would expect of two boys in consecutive school years.

They don’t play football, or ride bikes or play computer games together.

They don’t joke about their school teachers or laugh about things that have happened on the playground.

They don’t argue or fight nor do they spend hours whispering and giggling when they should be going to sleep.

Each year, as Sean has got older and more mature, Hugh has stayed resolutely at the new-born infant stage, his understanding of the world never passing that of a 6-month-old.

The cognitive gap between them growing ever wider.

Yet the relationship they do have is special.  Hugh responds to Sean in a way that he doesn’t to anyone else.  Without fail Sean can calm Hugh when he is angry or sad or scared.

He’ll snuggle up beside him, be that in his bed, or in hospital, or in his bean bag in the living room and Hugh’s face will light up when he hears his voice.

Hugh too provides immeasurable comfort to Sean.

We say Hugh has magic hugs, you can’t help but be comforted by them.

And when Sean has argued with his mates at school, or is in trouble for some misdemeanour or other, he’ll sneak in beside Hugh and whisper his problems to him.

And Hugh, with his calming aura and his soft, innocent face will listen without judgement and smile all his troubles away.

There are some worries that Sean doesn’t share with Hugh though.

These are the worries about the future; about Hugh’s future.

With sobbing tears, he whispers them to me after another sudden hospital admission and I’m heartbroken that I can’t promise him it will be OK.

At 9 years old he carries on his shoulder the fears, worries and responsibilities that an adult would struggle with.

Fears, worries and responsibilities that this adult does struggle with.

In the last six months alone, for example, he has watched me resuscitate his brother 7 times, he has called the ambulance once and has tried to do mouth to mouth on his brother himself.

I think it’s worth repeating, he is only 9 years old!

There are over 700,000 Young Carers in the UK, according to the Carers Trust.

Young Carers are anyone under the age of 18 helping to look after someone in their family, or a friend, who is ill, disabled or has a drug or alcohol problem.

January 25th is Young Carers Awareness Day and aims to raise awareness of the difficulties that Young Carers face.

Sean is a Young Carer for his little brother; he helps with Hugh’s tube feeds, he helps me lift him, he helps wash him and get him dressed.

Sean helps carry out Hugh’s physiotherapy programme, he helps support Hugh’s airway when he is choking and, despite absolutely hating the sight of vomit, will help catch Hugh’s sick when his reflux is bad.

Sean watches Hugh like a hawk and checks that he is breathing, he spots seizures and will shout for help.

He knows not to just call ‘Mum’ – that could mean anything from ‘there’s no toilet paper’ to ‘there’s somebody at the door’.

No, if there’s a real problem he shouts ‘Hugh needs help’ and I’ll come running.

We don’t force these responsibilities on him and I frequently tell him, it’s not his job, but he takes on that role regardless.

I’m proud of how well he copes with the challenges and how extraordinarily selfless he is, but I confess it nearly broke me to see him begin mouth to mouth on his brother while I was getting the oxygen ready.

The Carers Trust points out that being a Young Carer can have a big impact on their life as they grow up.

Being a carer can affect a young persons, health, social life and self-confidence.

It can cause them to be bullied or to miss time off school. In one survey, 48% of young carers said they were stressed because of their caring role.

I don’t want Sean to be at a disadvantage because of his brother’s complex health needs.

We ensure he has plenty of time to pursue his own interests (mainly football) and, even when Hugh is in hospital, we try to keep things as normal as possible for him so that he doesn’t miss the things he enjoys.

His school are aware of his caring responsibilities and the very unique challenges he faces.

They have been a great support and I always inform them if Hugh is in hospital – I would hate to think that Sean was worrying about his brother and then getting in trouble for not concentrating.

I know he does worry at school – there have been times when he’s heard an ambulance at playtime and worried that it was for Hugh (we live right beside the school), but I know and he knows that there are people there that he can talk to about his worries if he needs to.

He attends a sibling support group through the local children’s hospice so he can mix with children who have a similar home life and he’s had 1:1 support from the Young Carers group Spurgeons and attends their fun days too.

I hope that having all these elements of support in place for Sean will help him cope with his role as a carer as he grows.

Sean doesn’t see himself as a carer. He sees himself as a big brother.  He’s never known any different. For as long as he can remember there’s always been him and Hugh.

And Hugh’s always been the way he is.  There have been some occasions that Sean has wished Hugh could play football with him but there have been many, many more where he’s told me he wouldn’t change a thing about him.

Through blogging and writing about my two boys, I’ve had the pleasure of a number of people contacting me to tell me about their own relationship with their disabled sibling.

Often, they bring tears to my eyes – the love and pride in these messages always stands out.

Far from being a negative impact in their lives, the relationship with their sibling has enriched their lives and inspired them.  I think Sean would say the same about his brother.

And to leave you with one final thought – just recently, Sean was at a friend’s house where he watched two brothers get into a rather spirited fight.

After which, he commented to their mother – ‘I’m glad I’ve got a brother like Hugh, we never fight like that!’

In my mind, they were convulsive and very obvious-  what’s commonly known as tonic clonic seizures, or previously as grand mal seizures.

I wasn’t aware that seizures could be subtle or easily missed – staring into space for long periods of time or repetitive movements like lip smacking or hand wringing, for example.

My son, Hugh, had his first seizure that we are aware of at 9 months old, but it took a further 4 months and repeated episodes before they were diagnosed as epilepsy.

His seizures are incredibly subtle and cause him to stop breathing for minutes at a time.

Since then, he’s also developed seizures where his whole body stiffens (tonic seizures), seizures where he goes completely limp and unresponsive (atonic seizures), ones where he grinds his teeth and makes repetitive movements (focal seizures) and some where he stares into space without really seeing anything (absence seizures).

For a comprehensive list of seizure types and how to respond if you see someone having one, click here.

2. Diagnosis isn’t always straightforward

An electroencepholagram (EEG) detects abnormalities in brainwaves and is just one tool that can be used to diagnose epilepsy.

Small sensors, called electrodes are stuck to the head using glue or tape and record electrical signals from the brain onto a computer.

Hugh had 4 normal EEGs before finally being diagnosed with epilepsy after his 5th EEG.

EEGs can only measure electrical activity in the brain at the time the test is being carried out and whilst some types of epilepsy may present with irregular brainwaves all the time, other people only show unusual electrical activity at the time that the seizure is happening.

During the first 4 EEGs Hugh had, he didn’t have any seizures so the doctors decided to give him an ‘ambulatory EEG’ whereby Hugh came home from hospital with the electrodes still attached to his head and a small recording device with a button we should press should we notice any unusual behaviour that we suspected might be a seizure.

It wasn’t easy to keep his little hands from pulling at the wires attached to the electrodes on his head.

Manoeuvring a baby, a head full of wires and a little recording box from cot to pushchair to car seat etc wasn’t much fun either.

However, this time, the EEG detected a seizure and so a diagnosis of epilepsy was made when he was 13 months old.

MRIs and blood tests can also be carried out when diagnosing epilepsy, but often detailed descriptions of the seizures are the most helpful tool in reaching a diagnosis.

3. The importance of record keeping and taking videos

Keeping a detailed seizure diary is really useful when attempting to diagnose epilepsy and/or find the correct treatment.

I experimented with a number of different ways of recording seizure activity, including, at one point a pretty comprehensive spreadsheet that created graphs! There are even apps available now.

Essentially the key things you need to note is the when, what happened and how long for.

A good description of the actual seizure really helps. Things you could look for are:

• level of consciousness – can they hear you/respond to you?
• unusual eye movements – are their eyes rolling/blinking rapidly/looking in one direction?
• unusual muscle tone – are they more floppy or stiff than usual, is this in one limb or all of them?
• Is their breathing affected – note changes in breathing pattern or any blue tinges around the lips.

The most useful thing I have found though is to take a video. With smart phones now, it is incredibly easy to do.

The thought of video-ing my child while he was having a seizure really troubled me, it goes against your nature to video your child in such a distressing situation.

However, that first video was essential in ensuring the right diagnosis and treatment for Hugh.

Interestingly, although I thought I’d recalled all the essential points about the seizures, the video picked up on nuances that I hadn’t noticed.

I regularly video his seizures now and show them to his neurologist as well as use them to train staff working with him on what to look out for.

4. There is not always a simple treatment option

Naïvely, I assumed that once we had a diagnosis of epilepsy that the hard part was over and that treating it would be simple.

Thankfully, for the majority of people, finding the right anti-epileptic drugs is reasonably straightforward, and whilst they won’t cure epilepsy, they can work to control the seizures.

However, some 30% of people with epilepsy can’t find the right drug or combination of drugs to control their seizures – this is known as medically intractable epilepsy.

Hugh tried 7 different anti-epileptic drugs, none of which managed to get his seizures under control.

The side effects of the drugs were, in some cases, as horrible as the seizures and the whole process of starting a drug, slowly increasing it to the required level, discovering it wasn’t working, slowly weaning him back off it whilst simultaneously introducing another drug was painstaking and soul destroying.

Anti-epileptic drugs aren’t the only epilepsy treatment available and Hugh has tried the ketogenic diet with some success and recently had a vagal nerve stimulator (VNS) fitted.

You can find out about the ketogenic diet here and the vagal nerve stimulator here.

5. Epilepsy doesn’t have control your life… but you may need to work at that

A diagnosis of epilepsy can be devastating, particularly if it is hard to find the right treatment to control the seizures.

I’ll be honest, epilepsy has had a huge impact on our lives and prevents us from doing many things.

Hugh’s seizures are such that we need to be able to get medical help very quickly, so trips abroad can’t happen (in case he had a seizure on the boat/plane) and many an event has been cancelled at short notice due to an increase in seizures.

There was a time when we rarely left the house, his seizures were so frequent and severe.   However, we work hard to try and enjoy life as much as possible; we’ve learnt to live in the moment.

If that means one parent stays home (or in hospital) with Hugh while the other takes our elder son out, then that’s what happens.

If Hugh is having a good spell then we make the most of it, we go out and enjoy life as much as we can.  Hugh’s epilepsy might influence our decisions, but we work hard to ensure it doesn’t control us.

It’s not always easy and our expectations have had to change, but I’m determined that epilepsy won’t ruin our lives.

Hugh Murphy is 7 years old and has medically intractable, life threatening epilepsy. He regularly needs to be resuscitated during his seizures.

e is currently taking 2 anti-epileptics daily and uses a vagal nerve stimulator. His epilepsy is still not controlled but there have been recent improvements following the VNS implant.

His mum Emma Murphy blogs at www.LittleMamaMurphy.co.uk and you can follow Hugh’s story on facebook.

I want to nag you to find your school tie and put your shoes on.

I don’t want to connect your little tummy to a feeding tube for your breakfast and a cocktail of medicines before 8 o’clock.  I want to heat up a bowl of porridge and sit with you while you eat it, talking about the day ahead.

I don’t want to wash your face and brush your teeth, carefully wiping the foam away, lest you choke.  I want to peer over my glasses at you sternly with a look that says; “two minutes? There’s no way you’ve brushed your teeth for two minutes!”

I don’t want to wave you goodbye as you sit on a bus each morning with adults and children I barely know.  I want to hold your hand as we walk to school, I want to kiss you goodbye on the playground.

I don’t want to spend the time while you’re at school filling in forms for things you need, chasing appointments with consultants and picking up medication.  I want to be buying you the latest computer game or cleaning mud off your football boots.

I don’t want to panic each time the phone rings, worrying that it’s the school to tell me they’ve had to call an ambulance for you.  I want to worry about nothing more than bumped head letters and cut knees.

I don’t want to spend endless hours doing physio with you each evening, trying to force your floppy limbs to do things they really don’t want to do.  I want to listen to you read and practise your times tables and test you on your spellings.

I don’t want to put dinner into a food processor and blend it until it’s smooth enough for you to taste; three teaspoonfuls carefully spooned into your mouth, slowly, slowly, slowly.  I want to dish up a hot home-cooked meal and nag you to use your knife and fork properly and finish your vegetables.

I don’t want to wedge you into a sleep system each night and attach a probe to your toe. I want to tuck you in and cuddle you and wish you goodnight.

I want to put you to bed without checking your heart rate and oxygen levels.

I want to kiss your forehead without wondering about your temperature.

I want to watch you sleep without worrying about seizures.

I want to wish you goodnight and hear you reply.

Some days I don’t want to be your carer, I just want to be your mum.