Families kept in dark over keto diet’s power to cut seizures in epileptic kids as NHS won’t back it

Up to 17,000 children in the UK with severe epilepsy are being denied potentially life-changing treatment due to a lack of NHS funding, the MoS can reveal.

Experts have called on the health department to pump more money into wider use of the ketogenic diet — a high-fat, low-carb diet that has been shown to halve the risk of seizures in nearly 40 percent of children who don’t get better with traditional diets. epilepsy drugs .

The diet consists of consuming a lot of fatty foods – cheese, meat, eggs, nuts and oils – along with lots of green vegetables, but hardly any pasta, rice, potatoes or bread. Up to one in 10 who switch to the diet are seizure-free, studies show, and some are able to stop taking medications altogether.

The National Institute for Health and Care Excellence (NICE), which monitors the effectiveness of treatments offered on the NHS, says doctors should consider the ketogenic diet when children with epilepsy fail to respond to at least two prescription drugs, but it recommends it is not routinely offered because of concerns that it may cause stomach upset in some.

“Around 60,000 children in the UK have epilepsy and around 18,000 of those have a drug-resistant form,” says Sara Garland, founder of the epilepsy charity The Daisy Garland. “Only 900 are on a ketogenic diet – thousands more could benefit.”

Known to dieters as the “keto” diet, it can help you lose weight quickly, but its use as a therapy for epilepsy dates back 100 years, until modern anti-seizure drugs came into use in the 1960s and 1970s.

Its low sugar and high fat levels are thought to alter the brain’s ‘excitability’, decreasing the tendency to develop seizures. There are suggestions that it could combat psychiatric conditions such as bipolar disorder.

But children on a diet for epilepsy need to be closely monitored to make sure they’re getting the right amount of calories and nutrients so their growth isn’t affected. Eating plans must be carefully worked out and vitamin supplements are often necessary.

Ms Garland said: ‘Our charity has provided the funding to set up these NHS clinics. When the trusts see the impact they can have, they often take over the funding. Over the last 19 years we have helped 16 NHS trusts – out of about 200 – do this. But it doesn’t just reduce seizures – children also sleep better, their behavior improves and they can think more clearly. It makes a big difference to the quality of life.’

Professor Helen Cross, chair of the Prince of Wales’s Pediatric Epilepsy Program at University College London and director of the Great Ormond Street Hospital Institute Of Child Health, said there is good evidence that using the diet is much earlier – rather than as a last resort – can make a big difference.

Prof Cross led the UK’s first trial of the impact of the ketogenic diet on children with epilepsy in 2008, which found that after just three months, 38 per cent of children saw their seizures reduced by more than half.

‘We recommend that families try after two drugs have failed,’ Professor Cross said. ‘But it is often only mentioned when patients have failed after four or five treatments.

“Some parents take it on, but we don’t recommend this – it can have side effects and children need to be closely monitored.”

Experts have called on the health department to pump more money into wider use of the ketogenic diet — a high-fat, low-carb diet that has been shown to halve the risk of seizures in nearly 40 percent of children who don’t get better with traditional diets. epilepsy medications

Clara Hayhurst, 16, from Rugby, Warwickshire, was having regular seizures despite taking several anti-seizure drugs before her mother, Amanda, discovered the keto diet last year.

“I had never heard of it and her neurologist at Birmingham Children’s Hospital never mentioned it,” says Amanda, 55. month gone. .’

Clara’s seizures started when she was eight. “She was suffering as many as ten a day at one point,” Amanda added. “She was on four different epilepsy medications, which left her feeling drained and exhausted.”

It wasn’t until Clara was referred to a neurologist at St Thomas’ Hospital in London for a brain scan that the ketogenic diet was mentioned as a possible treatment.

When Clara tried it, her seizures started to subside after just a few weeks.

“All the pastries, pasta, potatoes, and store-bought bread are gone,” Amanda said. “I started baking my own keto bread with seeds and fed her eggs, meat, cheese, and large servings of green veggies.

“Now she only has a few seizures a month. Why was I not told about this diet before?

The Epilepsy Society last night warned that the diet “might not work for everyone,” adding: “Studies continue to explore how it works and why dietary treatments are effective for some people and not others.”