Managing epilepsy: A young Cork teen is fighting back
ABSORBING the news that your child has epilepsy is distressing for any parent but for many life can continue as normal.
In fact Dr Amre Shahwan, a consultant paediatric neurologist at Temple St Children’s Hospital, Dublin, is of the opinion that “the sky’s the limit” for the one in every 200 children in Ireland with epilepsy as long as a few of sensible precautions are put in place.
For instance, if your child swims, make sure he or she does so under adult supervision.
“And shower, don’t bathe,” he says. This is to avoid any danger of drowning should a seizure take place while your child is in the bath. If showering facilities are outdated and involve turning on both a hot and cold tap, switch on the cold first because that way, should a seizure occur, at least you’ll avoid burning. Similarly, be practical about where your child cycles. “It’s fine down on the farm, but not in the middle of O’Connell Street,” Dr Shahwan says.
“Other than that, we encourage parents to get their kids involved in all sorts of activities and sports with the exception of boxing, which exposes the participant to repeated blows to the head,” Dr Shahwan says.
Rugby, despite the risk of concussion, is okay “unless you’ve had recent surgery and are recovering” or if your epilepsy is structural and due to vessel malformation in the brain, but combat sport is not recommended due to the risk of vessels rupturing.
Dr Shahwan’s upbeat assessment of the lifestyle implications of epilepsy — a chronic disorder of the nervous system associated with abnormal electrical activity in the brain — during childhood will reassure any parent dealing with a recent diagnosis. His advice is not to let the diagnosis limit them — Elton John, Spandau Ballet’s Martin Kemp and Prince, one of the greatest musicians of his generation, all suffer from epilepsy.
Still, it’s a scary time for parents when that first seizure strikes. Anthony and Mags Cummins recall how their now 15-year-old son Adam had his first seizure in playschool aged three. There was no history of epilepsy in the family — Dr Shahwan says the most common type is genetic — and they were optimistic it was “a one-off”. But it wasn’t, and another seizure followed the next week and the epilepsy worsened until Adam was struggling with up to 40 seizures a day.
“We’re talking full tonic clonic [generalised seizure that affects the whole brain] convulsions, lots of movement and shaking,” Anthony says.
After several heart-stopping experiences for the Cummins family and garda escorts to hospital when seizures wouldn’t stop, they turned in desperation to the Ketogenic diet, a high-fat, low-carb, low-protein diet which requires precision timetabling and which should be followed only under the strict guidance of a specialised dietician.
In Adam’s case, it seemed to work. Anthony says within three weeks, his son’s seizures had reduced to seven a day. “And his alertness had improved immensely.” Adam was on the diet four years and it took the best part of year to wean him off it but by then Anthony says they were concerned it was affecting his development — he was small for his age.
He’s off it nearly a year-and-a-half now and there’s no change in the level of seizures, Anthony says.
Adam’s life is fairly normal — while he may be given extra assistance at exam time, he’s had practically no seizures at school, most are in his sleep. His bed is alarmed so a monitor alerts a call centre and the phone rings at home.
He continues to play hurling and football with Sliabh Rua in Riverstick, Co Cork, he is a keen gardener and he loves cooking. His parents are well versed by now in what triggers a seizure.
“Tiredness is the big one, or stress,” Anthony says. This is echoed by Dr Shahwan who says sleep deprivation is the number one trigger across all age groups, followed by tiredness, and, for some, stress. Failure to adhere to a medication regime can also trigger a seizure.
Photosensitivity affects between just 5%-10%. Bingeing on alcohol is not a good idea. “It’s not during the binge, it’s after it. An alcohol withdrawal seizure can occur when you are back at home lying on the couch, not during the binge itself,” Dr Shahwan says.
His advice is to let anyone involved in caring for your child – be it school, scouts, sports – know about their condition and how to deal with it in the event of a seizure which can range from a blank stare, to loss of consciousness and violent muscle contractions.
* For further information contact Epilepsy Ireland, an association with a long track record in improving public awareness of epilepsy through education and awareness campaigns.
An Epilepsy Ireland TV ad that features Ireland rugby coach, Joe Schmidt, whose young son suffers from epilepsy, will be broadcast from the end of January, and it will focus on how to assist a person who is experiencing a seizure.
Contrary to popular belief, you should not put something in the person’s mouth — they will not swallow their tongue. Instead, remember the TEAM acronym:
— take care to protect the person; try to make sure they don’t bang their head;
— Stay with them;
— Allow the seizure to take its course (don’t try to restrain movement;
— Move the person on their side when the seizure is over.
To complement the advert, Epilepsy Ireland is adopting the theme ‘epilepsy embraces sport’ to illustrate that people with epilepsy (especially children) can participate in a range of sports as long as their coach, and teammates, can assist in the event of a seizure.
* For more information, see www.epilepsy.ie/go/seizureaware
