YOU are what you eat, so they say. Sarah Dunn found out more about a revolutionary diet being offered by Sheffield Children’s Hospital which is giving epilepsy sufferers control over their condition.
The situation was desperate. Everything else had tried – and failed – to control Jessica Banks’ extreme form of epilepsy.
The eight-year-old was suffering around 40 seizures a week and had to wear a helmet constantly to protect her head because of the risk of falling to the floor and injuring herself.
Her condition had got so bad at one stage that she had to be put into a two-week coma in a bid to control her condition.
Her mum Amanda, from Epworth, near Doncaster, said: “When she was in the coma the doctors took us to one side a couple of times and said there was a good chance she wouldn’t survive at all.
“And if she did she was likely to have very severe learning difficulties.”
When Jessica was woken from the coma she had suffered a collapsed lung and had lost some of her memory. The learning difficulties were also present.
The Children’s Hospital introduced various drugs and Jessica also had a Vagas Nerve Stimulation implant – a device designed to control seizures – fitted.
But nothing worked and she was still having fits constantly.
It was then that specialists suggested the ketogenic diet, a regime of low-carbohydrate, high-fat meals, which has now wiped out many of her seizures.
The Sheffield Children’s NHS Foundation Trust has just started offering the special diet, with eight children a year set to benefit through the Children’s Hospital.
Patients stay in hospital for a week while they get used to the new food and parents are given training on the content of the meals with the support of a specialist epilepsy dietician.
The menu includes lots of oil, butter, double cream, eggs, mayonnaise and cheese which work because of their high fat content.
When this fat is burned as energy, it produces a waste product called ketone which has been proven to help cut seizures. By increasing the ketone levels, the numbers of seizures suffered is cut.
A typical meal is made up of a ratio of four portions of fat to one portion of carbohydrate but the overall meal sizes are much smaller.
Youngsters need extra vitamins to supplement the diet, plus careful monitoring – including two blood sugar and ketone tests – each day.
Half the children with epilepsy who go on the diet will see a 50 per cent reduction in their seizures and some will see them stop altogether.
Dad Andrew, aged 37, said the diet had been an immediate success with Jessica. He and Amanda thought up inventive ways to use the ingredients to provide adapted meals and snacks of her favoured foods such a pizza, curry and muffins.
He added: “Jessica just took to it instantly.
“Whatever she was given she ate. But it’s very low in carbohydrate and high in fat which is unfortunate because her normal favourites are pasta and bread, all the things she’s not allowed, so we have to try and improvise.”
Amanda, 34, said the key to success in the diet was all in the preparation – carefully weighing out the ingredients needed and ensuring that Jessica takes supplements to ensure she achieves a balanced diet.
“They are really nice meals, just smaller,” said Amanda. “It’s not that difficult, it’s just more time-consuming and it’s about being organised.”
The couple – who have another daughter, Emily, five – said they were thrilled with the results.
“The only time Jessica has had seizures since starting the diet is when she’s had a secondary illness as well,” Andrew said.
“When she’s been well she hasn’t had any.
“We’re so pleased about how it’s going – there’s nothing she’s said she doesn’t want to eat.”
Amanda added: “The nurses and consultants have been brilliant.
“Whenever we needed them they were at the end of the phone and still are. They are in regular contact with us about the diet and we can’t thank them enough for everything they’ve done. They’ve been fantastic.
“Jessica’s seizures have not stopped completely but she’s having more frequent, longer seizure-free periods.”
Sally Hartley, epilepsy liaison nurse at the trust’s specialist Ryegate Centre, said the results of the diet can be “amazing”.
“We use it mainly for children with refractory or hard to control epilepsy,” she said.
“A lot of these children have terrible seizures that can’t be controlled by medication and in some cases introducing the special diet can control them completely.
“It’s a high-calorie diet but it’s not a fad and it’s very important they are supervised by our specialists.
“The child has to come into hospital initially for a few days to be introduced to the diet which is then evaluated over at least four weeks.
“They are carefully monitored and we work with mum and dad to make sure they know what to cook and how much to give their child.
“We can only offer the diet to a select number of children at the moment as it’s not suitable for every child with epilepsy and families should never try this diet without being under a specialist consultant.
“The calorific needs of the child are worked out very carefully so as to minimise the affects of the extra fat content on their health.
“We’re very excited about how this will be able to help children and families for the future.
“We’re also delighted to be able to offer it in Sheffield where we have one of the best neurology departments in the country.”
Amanda said the diet have been far more effective in controlling Jessica’s epilepsy than any drug they had ever tried.
She added: “It’s only weeks into the diet but she’s become much more alert and we’re optimistic it’s having a positive impact.”