Starvation diet breakthrough for children with epilepsy

Children with otherwise untreatable epilepsy have had their lives transformed after doctors and dietitians at Cambridge University Hospitals put them on a strictly controlled diet.

For two years, Addenbrooke’s has been treating 30 children for whom standard epilepsy drugs were not working or were causing serious side effects. These children have multi-drug-resistant epilepsy and will have been tried on at least two anti-epileptic medications before being referred to the hospital by community paediatricians.

Laura Wearing, from Bury St Edmunds, was nine years old when she was diagnosed with epilepsy. She was having up to 200 seizures a day and within two years had lost all speech. Now 14, Laura began the diet last November. Her seizures have decreased to 50 per day.

Her mother Cathy says: “Within a month she was more alert and much happier. It’s the little things that have made a difference – she can now say a few words and even wave goodbye. It’s like having a bit of my daughter back. The diet does take time and effort, but it’s worth it, and the staff at Addenbrooke’s have been very supportive.”

Addenbrooke’s is one of a handful of hospitals around the UK running the diet, which has been approved by NICE following a large trial at Great Ormond Street children’s hospital.

The high-fat, low-carbohydrate and adequate protein diet is strictly controlled, and it is in this state of semi-starvation that the body produces ketones, which suppress the abnormal brain impulses that cause seizures.

Dr Anna Maw, consultant paediatric neurologist, says: “If you’re having lots of epileptic seizures every day, it is very difficult to recover between them and this can have a huge impact on learning and behaviour. Many of the children we care for are so badly affected that they have stopped learning altogether and some are actually losing skills.

“It’s not a miracle cure – it doesn’t work for everybody – but we do have a proportion of patients here who have seen a big reduction in seizure frequency and severity. The ketogenic diet offers hope for families in very difficult circumstances. We have seen the lives of some children and their families transformed by the diet, which is very gratifying for the whole team.”

 

Fasting to control epilepsy has been observed since ancient times – it is mentioned in the Bible and by Hippocrates. After the Second World War, doctors noticed that epileptics who had been soldiers or in concentration camps had stopped having seizures. With the advent of anti-epileptic drugs, however, dietary treatments went out of fashion.

 

Sonja Slegtenhorst, specialist paediatric dietitian, says: “This isn’t a diet to be attempted at home without professional support. A child must be provided with the correct advice, supplements and support. They may become very unwell if the diet is not monitored correctly by a clinician.”

 

The ketogenic diet service has recently held an open evening for parents of children with epilepsy to discuss the diet and meet epilepsy charity representatives. Families who want to find out more should ask their GP about a referral to Addenbrooke’s.

 

 

 

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