Dietary Hope for Epilepsy Sufferers
by Marcella MacEvoy

Health experts have found that a special diet treatment has dramatic benefits for epileptic children, ITV1's Tonight with Trevor McDonald programme reveals this evening [Monday] at 8pm. Preliminary results from researchers at Great Ormond Street Hospital [GOSH] have shown 42 percent of epileptic children who were following a Ketogenic diet for three months to have a greater than 50 percent reduction in seizure frequency with 19 percent reporting a reduction in seizures of 75 percent or more.

Paediatric neurologist Dr Helen Cross of GOSH in London led the research. She tells Tonight: "Following these results, we hope the Ketogenic diet will be recognised as an established alternative treatment for any child with challenging and resistant epilepsy. If the diet was introduced more widely across the UK it could have huge benefits in the future by reducing the need for medications in children with difficult epilepsy. Unfortunately, there are only a handful of departments in the UK who have the expertise and resources to deliver it."

The groundbreaking two-year medical investigation reveals that doctors were able to reduce the anti-epileptic medication in 42 percent of the children after three months on the diet and parents reported improvements in alertness, awareness and responsiveness in 75 percent of the children studied. Tonight explains the results in full and closely follows the amazing stories of three children with epilepsy who - with the help of their families - are following the diet in an effort to overcome their symptoms.

The study also involves the Institute of Child Health [ICH], The National Centre for Young People with Epilepsy [NCYPE] and the Central Middlesex Hospital. All centres are involved in the treatment of drug resistant epilepsy. The Ketogenic diet is a high-fat, low carbohydrate dietary alternative to drugs which can dramatically reduce or end seizures in children with severe epilepsy. There are two different diet types - Classical and Medium Chain Triglyceride [MCT] - experts do not know which is more effective.

Each family taking part is given a diary for recording their child's seizures. They also complete regular questionnaires on the child's mood, alertness and overall behaviour. They are monitored regularly by a dietitian and paediatrician who check growth, overall health, epilepsy symptoms and decide if there is any need for change in dietary prescription and epilepsy medication.

Sarah Laslett had her first seizure in October last year and within weeks she was having up to 70 seizures a day. Sarah's seizures were so violent that she had to wear a special helmet with a visor to protect her from serious injury. Sarah's mum Alex tells Tonight: "It was completely horrendous and I think I had got to the point where I was going to need some kind of anti-depressant….I can hardly bear to think about it… I would have flown to the moon to find her a cure."

GOSH decided to take Sarah on and almost immediately the seizures reduced.
Says Alex: "For Sarah it's been a complete miracle. She's gone from suffering everyday, numerous injuries to leading the most wonderful, happy normal life. All she wants to do is make up for lost time and play. Sometimes I can't keep up with her, she's racing around everywhere."

Six year-old Francesca Winful, from London, has also had great success on the diet. She had her first seizure when she was a two year-old toddler in October 1999. Over the following year her seizures increased and she was given medication. The drugs were ineffective and her seizures increased to between 60 and 70 a week, varying in type and severity.

Her mother Wendy tells Tonight: "It got to the point where she [Francesca] had a seizure at the top of the stairs and came tumbling down; it was a 999 job and those situations you can't deal with." Francesca began the Classical diet in September last year. Cameras follow her adapting to the new food and being monitored closely by medical experts. After two months the diet begins to work and Wendy talks to reporter Linda Duberley.

"She is so much more alert, much more responsive," says Wendy. "Last week she had six seizures - she used to have twice that in a day - but it [the diet] is quite hard work…much harder than I imagined. Francesca will now answer much more quickly, she told a joke the other day and that was fantastic. She's never done that before. She is generally aware of what she sees around her, she's seeing things that six months ago she wouldn't have seen."

Francesca is now totally drug free and has no major fits at all. She has been a real success story for GOSH although they accept the diet does not work for every child. Six year-old Matthew Williamson, from Devon, has struggled with the diet. Like Francesca he was diagnosed with epilepsy when he was two and prescribed drugs. His mother Nicola says the medication had a terrible effect.

"Matthew used to say that he saw a mouse in the corner of his room all the time… spiders crawling up his arms and flies. It's quite hard between three and four [years-old] to see that a child is hallucinating until you talk to other parents and realise their children are going through the same thing."

At five, Matthew was referred to GOSH and embarked last September on the MCT Ketogenic diet. After three months Nicola tells Tonight the difficulties she has experienced on the specialised diet. "Early on in the diet Matthew was irritable, very grumpy, he'd be tired and was screaming. He was having tantrum after tantrum. The other low point was the school sending him home because he was too naughty. But I am optimistic, I am his mum. I have to be sure that we keep going. I don't know whether Matthew will be seizure free but I am still hoping."

Although Matthew still has seizures, he is now totally drug free. "Matthew knows all his colours now like a normal child," Nicola says. "He's learning his letters and beginning to read short words. He is still very far behind but he's a teachable child. Health wise, he rarely complains of headaches, his eyes are bright, he is bouncy, happy and chatty - much more like a normal boy. He's making friends…before he was just a strange little boy in the playground but now he has friends and that's what anyone wants for their child."

Dr Cross adds: "The findings of our study demonstrate that the diet does actually work - often with dramatic effect - to reduce seizures. The main question now is to find out if there is any difference between the diets."

A typical breakfast on the Classical diet might include double cream, egg, butter and a small portion of fruit or vegetables, whereas - on the MCT diet - more starchy carbohydrate is allowed, for example a small serving of cereal or bread. On the MCT diet a supplement is needed which can be mixed into milk or food. This is a concentrated source of MCT fat and is available only on prescription.

Lunch and dinner might include a protein source, such as meat, fish or cheese, a serving of fruit or vegetable and fat in the form of butter, double cream, oil or mayonnaise, plus the MCT supplement if on the MCT diet. Snacks are allowed if they suit the child's eating pattern although they do tend to look smaller than normal, as fat provides more calories per gram than carbohydrate or protein. These may be a ketogenic diet 'cake', or a drink made up of milk and cream or milk and the MCT supplement.

In the GOSH study, the children have been randomised to receive either the classical or MCT Ketogenic diet. They were also randomised to either start the diet immediately [after 4 weeks of baseline seizure recording] or to wait an extra three month 'control' period before starting.
Recruitment for the study is ongoing, aiming for a total of 120 children. To date 79 children have been enrolled, of whom 73 have started the diet and 50 have been on the diet for three months or longer. The results were taken from a preliminary analysis of 31 children who had been on the diet for at least three months.

The diet is not effective for every child and although it has been used over a long period of time, the exact way it works is not known. The ongoing study is working to establish further the basis of its anti-epileptic effect. GOSH stress that the diet can only be carried out under medical and dietetic supervision. The diet is only suitable for children with drug-resistant epilepsy. All parents wanting their children to go on the diet will need a referral letter from their local paediatrician, who will assess whether the child is a suitable candidate.
Press Release from The Great Ormond Street Hospital for Children
www.gosh.nhs.uk