Our twins have epilepsy - we worry as a seizure can take place at any time

A CORK mum is working to raise awareness about epilepsy, which her twin sons live with and which impacts on daily family life.

Regina Kelly, from Dublin Hill, and her husband Brian are proud parents to Isobel, nearly seven, and identical twins Tadhg and Liam, who will soon be five.

The boys were born prematurely by elective C-section at 34 weeks and while Regina and Brian expected them to have challenges because of their early arrival, they could not have predicted what lay ahead.

Regina recalls: “We expected them to have some issues but they were both very sick at birth, which was unexpected. Liam was very bruised when he was born and had problems with his blood clotting.

“He suffered multiple subdural heamatomas (brain bleeds) when he was a day old. It was a very scary time. Tadhg was in the Neonatal Unit for three weeks and Liam was there for seven weeks.”

She remembers it as a very traumatic period, but there were more challenges to come for the family.

Due to the nature of Liam’s brain injury they were aware that seizures were a possibility but hoped they would never happen. But when Liam was 10 months old their fears were realised.

“It was a Sunday afternoon when it happened out of the blue. Liam had just gotten up from his nap and was in his baby seat in the kitchen. I noticed something different about him, mainly his eye twitching. I called an ambulance and in all it lasted 90 minutes. He had another prolonged seizure in the A&E in Cork University Hospital where he was transferred to a high dependancy room. Liam had a CT, MRI and EEG and was diagnosed with Focal Epilepsy and he was started on Anti Epileptic Drugs (AED).”

Meanwhile, Tadhg had his first seizure when he was 14 months old and started on AED after he had another seizure a few months later.

“We received support and help from the Paediatric Neurologist and the Epilepsy Nurses in the Cork University Hospital but at the time epilepsy was just a word — we didn’t realise how it would affect our lives,” said Regina.

“Epilepsy has such a huge impact on the family daily life. It’s a constant worry. You try not to let it take over but it does as it’s so unpredictable and can happen any time. We need to keep to a strict routine as tiredness can trigger a seizure.

“We are constantly aware that a seizure may happen at any time and this can be extremely stressful. As a result, it is very rare that both Brian and I are away from the boys at the same time. We have attended weddings/celebrations alone on occasion as we are reluctant to ask our families to take the responsibility involved in caring for the boys.”

Tadhg is now two years seizure free and continues to take AEDs. However, Liam’s situation is more complicated due to his brain injury.

“Unfortunately he has refractory epilepsy, it means AEDs are not bringing his seizures under control. Liam can thankfully go a few weeks without any seizures but some weeks he can have several daily seizures.

Tadhg (left) and Liam Kelly with their parents Regina and Brian and their sister Isobel at their home in Kinvara Park

Picture: Eddie O'Hare

“It’s heartbreaking and I am on guard 24/7 and find it very hard to switch off,” said the mum of three.

Having said that, Regina says the family have more good days than bad, and on those good days the boys are “into everything”.

“Tadhg and Liam are fun-loving rogues and so loveable. They love music and playing their toy guitars while singing along to Gavin James and Glen Hansard. They have an amazing bond and are the best of friends. Tadhg has alerted us to Liam having a seizure on more than one occasion. Tadhg is very caring and loving towards his brother, in particular when he has had a seizure and knows that he needs to rest.

“Isobel was nearly two when her brothers were born and has grown up accepting they have an illness and understands this is OK and not to be afraid of.

“Going to hospital is unfortunately the norm in our lives and she’s very understanding but it is hard on her, especially when days out have to be cancelled.”

The boys attend Sunvalley Montessori Pre-school four days a week and Enable Ireland Special Pre-school one day a week.

“Invariably, they are going to pick up coughs and colds and viruses. Illness is a big trigger for seizures so we are very mindful of keeping them well.

“The AEDs also have difficult side effects which at times can be very draining, these can include mood swings, tiredness, disrupted sleep, poor concentration to name but a few. Liam’s overall physical endurance and mobility are greatly affected as a result.

“Tadhg and Liam both have an intellectual disability and I don’t believe they fully understand epilepsy. They know they need to take medicine every day and thankfully they are very good for taking it.

“We would use the word seizure at home and are very conscious about not making a big deal about it.We always say to them they have had a seizure and reassure them.”

Regina feels there is still a stigma surrounding the condition, mainly because people are frightened by it, but she wants to change all that.

“When people think of epilepsy they think it’s falling on the ground and having a convulsive seizure, but someone could be in my house and not realise that Liam is having a seizure as it could be as subtle as a twitch, or he might get a blank look that I’d recognise or he may make a gasping sound.

“There are around 40 different types of seizures.” Regina would like everyone to be more seizure aware.

“We would love for everyone to go on to www.epilepsy.ie and familiarise themselves on the different types of seizures and what to do if you witness a seizure.

“There are so many myths surrounding seizures, not all seizures are convulsive.

“Anyone can have a seizure at any time and it doesn’t necessarily mean it is epilepsy. It’s good to be seizure aware.”

Initially Regina didn’t seek out help from Epilepsy Ireland — their Cork office has recently relocated to Ballincollig — but when she did she found them excellent. To say thanks she’s holding a Coffee Morning in Murphy’s Rock Bar on March 23 - just before International Epilepsy Day on March 26, when Epilepsy Ireland are hoping people will wear purple and business and buildings will light up purple.

“After the diagnosis I felt there was so much going on that I couldn’t speak to anyone, but I regret not going to them sooner; they are always at the end of the phone and there’s also a chance to meet up with other parents of children with epilepsy in the same situation at a regular family support group.

“Epilepsy Ireland also spoke to the pre-school staff when the boys were starting and reassured the staff on what to do should the boys have a seizure.

“We are holding the fundraiser in Murphys Rock Bar on March 23, 10am to 12pm.

“Murphy’s Rock have kindly sponsored the teas and coffee and are allowing us to use their Garden Room to hold the function.

“We would love if people could come and make it a great morning.

“We don’t want Tadhg and Liam’s life to be limited by epilepsy and hope by having the fundraiser we can raise epilepsy awareness.”