Evelina London experts treat epilepsy with food

Kehinde Olarinmoye and her son Hendrix La Gree.

Experts from Evelina London’s specialist epilepsy service are treating young people whose condition can’t be controlled with medication with a radical change in diet.

The ketogenic diet is a high fat, low carbohydrate diet that changes how the brain gets its fuel. Mary-Anne Leung is a specialist paediatric dietitian at Evelina London specialising in ketogenic diets, she explains how the diet works:

“The brain usually gets its energy from glucose in carbohydrates. When you starve the body of carbohydrates it begins to produce ketones and the brain uses those for energy instead. It’s called being ‘in ketosis’ and it seems to stop seizures. We don’t really know how it works but researchers think it reduces the excitability of the neurones or calms the parts of the brain that are susceptible to seizures.

“The ketogenic diet is a very unusual and unnatural diet because it’s very high in fat, very low in carbohydrate and quite low in protein. We don’t know what the long-term effects of a very high fat diet are yet so we only offer it as treatment to children whose medication isn’t working. We tailor the diet to each child to make sure that it’s going to be both achievable and effective.”

Five-year-old Hendrix La Gree has seen a huge difference since starting the diet. Hendrix’s epilepsy is caused by a rare neurological condition called lissencephaly which means that parts of his brain appear smooth. His mother, Kehinde Olarinmoye, was looking for alternatives to Hendrix’s medicines after they stopped being so effective.

Kehinde recalls what it was like when Hendrix’s seizures suddenly escalated after he began school aged four: “They spiralled out of control, becoming much more frequent and severe. For the first four years of his life, we’d only have to go to A&E once or twice a year, now we were going every week for months on end.”

Dr Karine Lascelles, a neurologist specialising in epilepsy, suggested Hendrix try a ketogenic diet to control his epilepsy after adjustments to his medication didn’t stop the seizures. Hendrix’s epilepsy clinical nurse specialist, Martin Smith, says there was a difference within a week:

“Our aim is for children with epilepsy to live as normal a life as possible. The number of hospital visits for Hendrix was vastly reduced right away and that will have been life-altering.”

Kehinde explains what a difference the diet has made: “We went a whole week without going to A&E, then two weeks, three weeks and suddenly we’d gone a whole month without needing to go to A&E so I knew we were making progress. It made a huge difference. I was initially stressed and tired because I was worried that if he had a seizure whilst I was asleep I wouldn’t be able to help him. Now I’m so much more relaxed.

“I noticed a difference in Hendrix’s behaviour too. He’s become much more alert, happy and giggly.

“The Evelina London team have been an absolutely fantastic support on the diet. There’s never a question too difficult for Mary-Anne to come back to me with a quick response and Martin is always available at the end of the phone.”

Hendrix is finally settled in school since starting the diet and Kehinde has planned a well-earned holiday for herself and Hendrix. First stop, the Cayman Islands…

Read the full story in The GiST.

Find out more about epilepsy services at Evelina London.