When Olivia was 3.5 years old epilepsy symptoms began to show following on from what her mum suspected was an overly ‘jumpy’ disposition from around 18 months of age which was dismissed as nothing to worry about at the time and ‘not seizures’. By the age of 4 after months of hospital visits and tests, Olivia was diagnosed with Startle Epilepsy.
Olivia would have drop-seizures on a daily basis – all triggered by sudden noise. Drops included losing consciousness for 10 seconds. She wouldn’t go limp and fall – she’d suddenly drop and slam to the ground – which sometimes happened to be concrete.
Her family were living in fear. The sound of her mum, Cath, closing a bin or her older brother playing with his toys triggered a drop-seizure. Causing her to face-plant and nearly lose her front teeth on many occasions.
Keppra was first prescribed to control the seizures but it didn’t work. It was then that Cath decided to try the keto diet to control Olivia’s epilepsy alongside drugs.
But how would Olivia adapt?
Olivia was a carb fiend – she loved chips, crisps and potatoes. So potentially a low-carb diet was going to be a challenge. Olivia started her keto diet in May 2019 (nine months ago at time of writing) and practised eating two keto-style meals a week before increasing this to three plus a snack and so on. After just two days the family noticed a difference.
“We saw her ‘drops’ halt. We made a noise in the living room and she looked as if she was going to drop but she didn’t.”
After two weeks of success, Olivia had an increase in drops again but the family persevered. Toys became a reward for meal trials and Olivia accepted everything. She was, and is, very accepting of the fact that her food is different. She refuses sweets and food that she can’t have, even when her parents aren’t watching. Olivia thinks the ‘fruity-bits’ (fruitivits) vitamins that she has on prescription are actually a treat.
“It’s changed our life completely”
“It’s changed our life completely”, explains Cath. “Before keto, Olivia had no interest in food – she looks forward to it now and enjoys it”. Olivia tried celeriac fries at four years four months and there was no going back. Together with keto-friendly tomato sauce (available via Amazon) and Hellman’s mayonnaise they’re her favourite food. Closely followed by Keto Pizza and chocolate mousse for dessert. The family also make fruit lollies to help keep Olivia hydrated and reduce the risk of kidney-stones.
Challenges
Although Olivia hasn’t experienced any side-effects from the keto diet, the family have still faced several challenges. Her meds changed at Xmas 2019 and Keppra was reduced completely and replaced by Epilim. She also experienced her first tonic-clonic seizure at Xmas plus cluster seizures – all during her sleep and therefore in a safe environment.
Eating out as a family is difficult. Their choice of restaurants is often limit to Ikea or somewhere there’s a microwave that they can use. Cath hopes that more chefs and restaurants will begin to see the importance of adding keto options and labelling to their menus which would make a huge difference to so many lives.
Support
“I’ve been very lucky”, says Cath “the support we’ve had from Matthew’s Friends was amazing”. The team at Matthew’s Friends called Cath on a daily basis to tweak and monitor Olivia’s diet and support the family before they were referred back to the NHS.
They also organised special cookery classes with keto- expert Chef Neil in Cardiff. So Cath could learn new culinary skills to support Olivia’s diet. Facebook was also a huge support. The closed group ‘Keto Café’, managed by Daisy Garland, has provided a community of support for Cath and other parents and young people with epilepsy.
“Keto has been amazing. It’s the cognitive clarity it provides.”
Now aged five, Olivia has been drop-seizure-free since October 2019 (4.5 months after the start of her keto diet). Although she still wears her helmet currently, Cath hopes this will soon be redundant. Another benefit of her diet is that she’s not as tired. With 121 support from her school Olivia is handling full days at a bilingual Welsh-English school and continuing to hit her targets cognitively – learning two languages. Cath is adamant that Olivia’s diet, not drugs, has reduced her drops and controlled her seizures. So much so, the keto diet is something they refuse to compromise on. Cath urges other people with epilepsy to “keep going with keto – the results really are amazing.”
