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29 June 2017

Specialised diet helps children suffering from epileptic seizures

Ketogenic dietitians at Bristol Royal Hospital for Children are helping young people with epilepsy manage their seizures through a specialised diet.

The ketogenic diet is high in fat, with low amounts of carbohydrate and sufficient protein for growth. Each diet is tailored to an individual's needs and can be given orally or through a feeding tube.

Ketogenic diet team

The team treats patients from birth to 18 years old in the South West and also accepts referrals from across the UK, including a recent expansion of the service to South Wales.

When eating a normal diet our brain uses glucose as its main source of fuel, which comes from carbohydrates. When these foods are removed from the diet and replaced with a diet very high in fat, the body responds by producing ketones, which the brain starts to use as its new fuel.

The exact mechanism of how the diet works isn't yet known however it appears to reduce the abnormal electrical activity in the brain which can cause seizures. This may be due to the direct action of the ketones produced or the metabolic changes associated with ketosis.

The service was set up in 2010 and has since treated more than 90 patients and continues to grow, with more neurologists considering this as a robust treatment option for the management of epilepsy.

Victoria Bittle, specialist paediatric ketogenic dietitian said:

"We have found the diet to be effective in lots of different types of seizure disorders and infantile spasms.

"Fasting has been used as a treatment for seizures for many years and was first used in the 1920's as a treatment for epilepsy.

"Generally, a third of patients respond very well, 10-20% becoming seizure free. A third have a 50% improvement and a third unfortunately don't respond at all. In some cases, it may be possible to reduce or even stop anti-epileptic medications, a decision made by the neurologist.

"A three month trial is offered to all patients to assess the effectiveness of the diet and we only continue with it if there has been a marked improvement in the child's quality of life.

"Children should be considered for the diet if they have failed to respond to two or more anti-epileptic medications. A paediatric neurologist or consultant paediatrician can refer to us.

"The ketogenic diet can be administered orally or through a feeding tube and can be used in combination with medications and other therapies.

"It's so rewarding to be able to help children through the diet and see the incredible life changing effects it can have."

 Jack Savin

Mandy Savin's little boy, Jack, experienced a seizure at 18 months old which led to him being hospitalised. It was discovered he had a rare genetic disorder known as SCN2A. After trying different medication, consultants suggested that they begin a ketogenic diet to help reduce Jack's seizures:

"I had done some reading about it and thought it sounded great, but didn't realise they offered it in the UK, so I was thrilled when we got referred over to the team in Bristol.

"They were fantastic they ran some tests on him to make sure he was going to be ok on it and we started it in February 2016.

"A few weeks later he picked up a bug and we got sent back to hospital with terrible seizures, but we weren't deterred and continued with the diet.

"We started noticing some real cognitive changes in him - a few smiles started shining through, something we hadn't seen in nearly six months. We were so excited and the seizures where becoming less and less.

"From then on he has just gone from strength to strength; he has gone from having up to 50 seizures a day to on average one or two a week.

"It's amazing how well he is doing, he's gone from being tube fed to feeding himself with a bottle; he is crawling around the room and even looking to play with his toys and again; and best of all he's laughing with his little sister.

"We are so grateful to the staff in Bath and Bristol for never giving up on our little boy and always fighting for him."