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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

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