When my then seven-year-old son Matthew shouted, “I can’t get up, my legs won’t work” one January morning in 2014, our lives changed – and the memory still terrifies me today.
It was followed by feelings of panic, fear and bewilderment, 999 calls, tests, an overnight stay at Glasgow’s Yorkhill Hospital for Matthew and my wife Lisa, further seizures and, after an electroencephalogram (EEG) and an appointment with a consultant, a diagnosis of Benign Rolandic Epilepsy.
We had no experience of epilepsy but were about to embark on a steep learning curve.
There are dozens of types of epilepsy and many different varieties of seizure. When Matthew suffers a generalised or tonic-clonic seizure – where the sufferer loses consciousness and their limbs twitch (the type most of us associate with epilepsy) – it is a distressing experience and we can do nothing other than offer him comfort.
Mercifully, he is unaware of what is happening during these episodes and suffers no lasting effects.
When we saw the consultant, he advised medication given the frequency of Matthew’s seizures – every three weeks – but left the decision to us.
We decided we had to try to get his epilepsy under control. He was prescribed carbamazepine and, for a few months, it worked. But then the seizures began again.
The dose was increased several times as the seizures continued and Matthew became increasingly dazed and zombie-like. Eventually, we were told that the medics believed a drug which is widely used overseas but not generally available in Scotland could be effective in treating his type of epilepsy.
We tried it, and it worked. We had our wee boy back. He was seizure-free, alert – or as alert as a daydreamer like Matthew can ever be – and, best of all, happy.
Looking back, it was clear he had been suffering for some time before we realised anything was wrong.
He had experienced a massive loss of confidence, was tired most of the time, had gone through a spell of crying and clinging on to me when I dropped him at school and was generally unhappy.
He played football on Saturday mornings and I used to give him a hard time for not trying. But the condition affects quality of sleep so the wee soul probably barely knew where he was. I’ll never forgive myself for that.
I’ll admit, too, that I shed a few tears – not so much for the epilepsy but for the fear of the things he might not be allowed to do.
There is much ignorance and still a stigma around epilepsy – even though it affects around one in every 100 people and can strike anyone at any time.
What would it mean for sleepovers? Cub camp? The ignorance surrounding epilepsy was demonstrated on one occasion when Matthew was told he couldn’t take part in go-karting at a friend’s birthday party. We had a blazing row with the staff and they relented but it was highly embarrassing for us and all the other parents present.
Words cannot adequately express how proud I am of Matthew. He has shown remarkable resilience. We recently had to tell him he couldn’t go to a Scout camp because he has just come off his medication after more than two years seizure-free. He was upset and disappointed but he accepted it and quickly bounced back.
He’s a happy soul, who loves to play football or knock about with his pals. To have coped so well with so much at such a young age is remarkable.
I’m proud, too, of his big sister Grace, who is now 14. She was the first to witness a seizure and alerted us to it.
It was traumatic for her, as was the realisation we must all face at some time – that our parents don’t have all the answers and sometimes are just as scared as you are. We are grateful to all the medical staff we have encountered – particularly the ambulance crews, who were so calm and professional. Whatever they get paid, it’s not enough.
There is no single test for epilepsy so, for now, we can only wait and see if Matthew remains well.
However, he is one of the lucky ones. His epilepsy was controlled by medication and almost certainly will be again if necessary – and he is very likely to grow out of it.
But for many, that is not the case. Epilepsy can be a lifelong condition and in three out of 10 cases can’t be controlled by drugs. I found it difficult to write about this but if it helps raise awareness, it will have been worth it.
I worried a lot after I found out what was wrong and couldn’t sleep at times because I was scared.
I was worried that having epilepsy would affect what I could and couldn’t do – such as sports – because something might happen to me when I was taking part.
Having epilepsy has made me more aware that other people aren’t as lucky as I am. We raised £1136 on Jeans for Genes Day at my school, Netherlee Primary in Glasgow, after I suggested to the head teacher that we take part.
The epilepsy has made me grow up and do a lot more things. If there is something going on at school, I nearly always volunteer – something I would never have done before.
When I look back to the time Matthew was first ill, it upsets me.
I struggled in school because I was distracted by everything that was going on around me.
I gradually began to feel better when his seizures stopped.
Then, when he came off his medication recently, I was a little bit worried again, though not as scared as before.
When we saw an ambulance the other day, Matthew spoke about his experiences and that brought the bad memories flooding back.
However, when I had a chance to think about it, I realised that if he became unwell again, it would be sorted out just like it was before.
It makes me really proud every time Matthew achieves something.
He is much more content and confident than he was back then and that makes me happy.
■ There are around 600,000 people in the UK with epilepsy
■ In more than half of all cases, doctors don’t know the cause
■ There are many types of seizure and not all result in a loss of consciousness
■ Only around three per cent of sufferers have photosensitive epilepsy – where flashing lights can trigger seizures.