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Treating Epilepsy

by Sarah Spendiff

Treating Epilepsy using the Ketogenic Diet

Treating Epilepsy

EMMA Williams was told her son Matthew wouldn’t make it to 12-years-old due to his severe Childhood Epilepsy, or if he did he would need to be placed in a care home. He was only six when Emma heard this from the doctors treating him at Great Ormond Street Hospital. But now, thanks to a specialised diet, he is a happy, healthy 14-year-old with a normal life expectancy.

Matthew was one of the lucky ones to be placed on a new medical trial at GOSH studying the effects of the Ketogenic Diet in the treatment of Childhood Epilepsy. The diet is similar to the Atkins in that it is made up of high fat, some protein and very low carb. This puts the body into a fat burning state known as ketosis, during ketosis the body produces ketones which miraculously stop the seizures.

The diet has been used to treat epilepsy for many years but with the onset of epileptic drugs it was sidelined. Now thanks to the new study soon to be published by Paediatric Neurologist, Professor Helen Cross, it is becoming more widely used in the treatment of complex epilepsy.

The condition affects around 200, 000 children in the UK and a third of those children will be resistant to medication. Prof. Cross says: “There is no doubt that this diet works in a significant amount of children. If you fail with the first two drugs then the likelihood of any other drug succeeding is about ten percent. Currently there is no evidence on the ketogenic diet in treating childhood epilepsy because there has been no randomised control trial until now. Once my study is published the level of evidence to say it should be used goes right up.”

This is good news for many families like Emma’s who live with the trauma of seizures on a daily basis. Emma says: “Before the diet Matthew was having a hundred seizures a week. I knew that every seizure longer than five minutes causes brain damage - his lasted for an hour. He was regressing, losing his speech and ability to walk. My child was slipping away and we were all powerless to stop it because the drugs didn’t work and some even made him worse.”

“Matthew was eight by the time he got the diet. His first MRI brain scan showed he had no brain damage and they couldn’t detect where the epilepsy was coming from. When he had his second MRI scan before going on the diet it showed that his brain was badly scarred from the seizures which caused further seizures as well as brain damage. It’s due to the brain damage that Matthew can’t walk. If he had got the diet in the first place I worked out he would have been spared over 24,000 seizures.”

According to Emma within two weeks of being on the diet Matthew had a ninety percent reduction in his seizures. “My son is coming back to me. For the first time ever at eight years old he said ‘Mama’. It was the most amazing feeling. I now have what’s left of my boy back.”

Emma is not alone. Other parents have met with resistance when asking for the diet. According to Prof Cross this is more likely due to lack of dietetic resources than lack of confidence in the diet. “There is knowledge among paediatric neurologists that it works. The problem is the dieticians, we don’t have enough resources and it’s very labour intensive. We need to have dedicated and experienced dieticians to implement the diet. I have the resources to have thirty children on the diet at any one time but I’ve still got a huge waiting list.”

However the diet isn’t always a success. Lesley Coyne from Glasgow has had two children on the diet but for her son Jonathan, it made little difference so after two years she made the decision to take him off it. “At the moment he is on medication and doing very well. We weren’t able to start him on the diet initially as there were no dietetic resources at the hospital where he was being treated.

A year and half after his diagnosis he went on the diet. It helped at first but made little overall difference, he was till having morning seizures and absences after two years so we decided to take him of it. When her daughter Jennifer was later diagnosed with epilepsy at two.

“The drugs didn’t seem to help Jennifer but within two days of being on the diet she went from several daytime seizures and constant absences to only having a few seizures at night. Jennifer was a very sick little girl who couldn’t so much as hold a cup before the diet. Perhaps if Jonathan had got the diet sooner, who knows what might have happened.”

Information Panel

  1. Epilepsy is abnormal brain activity that leads to recurrent seizures. A seizure happens when the normal working of the brain is interrupted.
  2. One in 200 school age children has epilepsy and ten per cent are severely affected. Around one in 30 people in the UK develop epilepsy at some point in their life.
  3. Epilepsy is treated using anticonvulsant drugs or brain surgery in a few cases. A quarter of those affected are resistant to medication and may benefit from the diet.
  4. The Ketogenic Diet is a high fat diet designed to mimic the metabolic effects of starvation. In the USA, 1910, a Dr. Conklin found that a patient deprived of food for up 25 days had a reduction in seizures. In 1921 the Mayo Clinic investigated further and devised the diet.
  5. With the onset of anti-epileptic medication the diet was sidelined until the 1990s when a feature on US TV highlighted the diets use and success. The diets profile was raised again when Professor Helen Cross instigated further research at GOSH.
  6. Recent evidence suggests the diet is effective in up to 60% of the drug resistant population. Some side effects of the diet may include kidney stones, constipation and slowed growth, although children can stay on the diet long term.

More information and examples of work can be found on Sarah Spendiff's website.