#EPILEPSY WEEK
Epilepsy is a common but much misunderstood condition. To mark Epilepsy Awareness Week, Scott Allan writes about his son Matthew’s experience with the disorder – and Matthew and his sister Grace tell how it affected them
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 tonicclonic 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 zombielike. 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