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 a potentially life-changing treatment due to a lack of NHS funding, the MoS can reveal.

Experts have called on the health service to pump more cash into wider use of the ketogenic diet – a high fat, low carbohydrate regime that has been shown to halve seizure rates in almost 40 per cent of children who do not get better on traditional epilepsy drugs.

The diet involves consuming lots of fatty foods – cheese, meat, eggs, nuts and oils – along with plenty of green vegetables but barely any pasta, rice, potatoes or bread. Up to one in ten who switch to the diet are seizure-free, studies show, with some able to quit taking medication altogether.

The National Institute for Health and Care Excellence (NICE), which vets 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 medicines, but it does not recommend it is offered routinely due to concerns that it causes stomach upsets for some.

‘Some 60,000 children in the UK have epilepsy and around 18,000 of those have drug-resistant forms,’ said Sara Garland, founder of epilepsy charity The Daisy Garland. ‘Just 900 are on a ketogenic diet – thousands more could benefit.’

Known among slimmers as the ‘keto’ diet, it can help shed weight fast, but its use as a therapy for epilepsy dates back 100 years, until modern anti-epileptic drugs came into use in the 1960s and 1970s.

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

But children on the diet for epilepsy need to be closely monitored to make sure they get the right amount of calories and nutrients so their growth is not affected. Eating plans have to be carefully worked out and vitamin supplements are often needed.

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 financing of it. Over the past 19 years we have helped 16 NHS trusts – out of around 200 – do this. But it doesn’t just reduce seizures – children also sleep better, their behaviour improves and they are able to think more clearly. It makes a big difference to quality of life.’

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

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

‘We’d advise families to try it after two drugs have failed,’ said Prof Cross. ‘But often it’s not mentioned until patients have failed on four or five treatments.

‘Some parents are taking it upon themselves, but we do not recommend this – it can have side effects and children need to be properly monitored.’

Experts have called on the health service to pump more cash into wider use of the ketogenic diet – a high fat, low carbohydrate regime that has been shown to halve seizure rates in almost 40 per cent of children who do not get better on traditional epilepsy drugs

Clara Hayhurst, 16, from Rugby, Warwickshire, was suffering frequent seizures despite being on several anti-epilepsy drugs, before her mother, Amanda, discovered the keto diet last year.

‘I’d never heard of it and her consultant neurologist at Birmingham Children’s Hospital never mentioned it,’ said Amanda, 55. ‘But since being on the diet for the past ten months, she’s gone from two seizures a day to two a month.’

Clara’s seizures began when she was eight. ‘At one point she was suffering up to ten a day,’ Amanda added. ‘She was on four different epilepsy drugs, which left her feeling exhausted and drained.’

It was only when 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 tail off after just a couple of weeks.

‘Out went all the pastries, pasta, potatoes and shop bread,’ said Amanda. ‘I started to bake my own keto bread using seeds and gave her eggs, meat, cheese and big servings of green vegetables.

‘Now she has just a few seizures a month. Why wasn’t I told about this diet before?

The Epilepsy Society warned last night that the diet ‘may not work for everyone’, adding: ‘Studies are continuing to investigate how it works and why dietary treatments are effective for some people and not others.’