Ketogenic Diet helps Emily to become seizure free
A young person who has epilepsy has benefitted from a change to her diet which has helped her to become seizure-free.
In 2017, seven-year-old Emily Banks was referred to The Ketogenic Diet Service at our Children’s Hospital with the aim of commencing the ketogenic diet as a form of treatment for her drug-resistant epilepsy.
The ketogenic diet is a high-fat, adequate protein and very low carbohydrate diet. This encourages the body to switch from using carbohydrates (glucose) as its main source of energy to using ketones, which are made from fat. It is thought that this stabilises the signals in the brain.
The diet aims to reduce seizures by at least 50 per cent, in some cases, seizures can stop altogether. Improvements in behaviour, alertness and interaction have also been noted in some young people. Children will normally be started on the diet for a trial period of three months and if the diet is effective, it will then be continued for two years.
Emily’s mum, Lesley said: “The ketogenic diet has been life changing, my daughter’s quality of life has been improved immensely. She is now and will hopefully stay seizure free.
“Many, many thanks to everyone in your incredibly fantastic team.”
Our Ketogenic Team is made up of three Consultant Neurologists, one Clinical Fellow, one Epilepsy Specialist Nurse, three Ketogenic Dietitians as well as administrative support.
The dietitians give in-depth training on how to adapt the diet and monitor the response closely. Our patients might have underlying swallowing difficulties so we often adapt standard tube feeds over to specialist ketogenic feeds. The diet requires twice daily monitoring of blood glucose and ketones via a finger-prick and our dietitians also provide training on this.
Emily was referred on a generic age-appropriate gastrostomy tube feed alongside some blended diet. Our Ketogenic Dietitians converted her over to a specialist ketogenic gastrostomy feed alongside providing advice on how to change her blended meals over to ketogenic blended meals. For Emily, this resulted in a 60 per cent improvement in seizures which then improved further which resulted in her becoming seizure-free.
Astrid Allford, Specialist Paediatric Ketogenic Dietitian said: “As Ketogenic Dietitians we were instrumental in the implementation and monitoring of Emily's ketogenic diet. We developed her ketogenic tube feeding plan whilst providing advice on how to make up ketogenic blended meals. This ensured we respected parents’ wishes to continue blended diet.
“We provided the initial training on how to test blood sugars and Ketones as well as providing advice of what to do if these were abnormal. We often liaised with Emily’s school providing training and updates where required and conducted regular phone reviews between scheduled outpatient appointments. We were also involved in requesting monitoring bloods and highlighting any abnormalities to the Consultants.”
The ketogenic diet has some potential long-term side effects such as deterioration in bone health therefore there is always an aim to wean off the diet after two years. Any seizure improvement on the diet then often remains. Our team tried weaning Emily off the diet in 2019 but seizures returned so she remained on the diet until 2023 when she had a successful wean off the diet.
Since then, she gradually transitioned back onto a standard paediatric tube feed for her lunchtime feed alongside normal non-ketogenic blended meals at breakfast and evening mealtime. Emily continues to be seizure-free.