May 2015 George's mum Corrin talks weaning George off the ketogenic diet
George has Doose syndrome, a difficult to treat form of epilepsy. Mum Corrin tells us how George (aged six) is supported by Dad Mark, Ruth (aged ten), James (aged three) and Matthew (aged one) to manage his ketogenic diet. They also share the hope that George’s newest treatment, a vagus nerve stimulator (VNS), will further help control George’s seizures.
In November 2011, George had his first tonic-clonic seizure. He was just three years and 10 months old, and I (Mummy) was 14 weeks pregnant with our fourth child.
It was 7.15am on a Monday morning. George was playing with his toys. It happened totally out of the blue [a prolonged seizure]. From that moment all our lives were to change significantly. Over the next few days George had more seizures. He also had an electrocardiogram (ECG), a computerised (axial) tomography (CT) scan and a magnetic resonance imaging (MRI) scan. All the test results were normal. A few weeks later George had an electroencephalogram (EEG), which diagnosed epilepsy.
Our beautiful, healthy, above average, clever child was suddenly presenting a most scary symptom of something going wrong in his brain. He was having seizures for no known reason, with no pattern, at any time. We were grateful to discover that it was most likely that George wasn’t experiencing any pain or awareness during these seizures.
A diagnosis of an epilepsy syndrome
George was eventually diagnosed with Doose syndrome. There were days when George had hundreds of seizures. We tried about a dozen drugs [epilepsy medicines]. Each brought their own side-effects. These included loss of speech, loss of mobility, lack of concentration, loss of appetite, nausea, sickness, hyperactivity and aggressive behaviour.
As seizure types changed - the medicine had to as well. As each drug was introduced we had to decide whether the seizure control (if any) outweighed the side-effects. It was hard to work out what was epilepsy and what was the medicine. At one stage George was on five anti-epileptic drugs and still the seizures continued.
From the start of our epilepsy journey our paediatric epilepsy nurse specialist has closely worked alongside us. Helping us understand epilepsy. Helping us manage George. Explaining the various treatment options available. Helping us make informed decisions.
George’s new diet
In January 2012 George started the modified Atkins ketogenic diet. It is a very strict diet. Everything is weighed to ensure the correct balance of carbs and fat are achieved. The ‘modified Atkins’ part has allowed some flexibility with his protein intake.
The ketogenic dieticians at Royal Belfast Hospital for Sick Children carefully studied George’s history. They took into consideration his current diet and set food targets and planned menus to get us started.
This was a very anxious time - learning a whole new regime. George has four meals, eaten at around the same times each day. Each meal has a specific amount of carbs and fat. Three of the meals also include a portion of protein. Each night, at around 11pm, George receives his final meal and we check the ketone levels in George’s blood.
As a whole family, we have had to embrace the diet. At the beginning we had to be very strict with all the kids. This was to make sure no mistakes were made with George’s eating and drinking. The fruit bowl had to be removed from the kitchen table. No snacking between meals. Everyone drinks the same carb and sugar free juice. No sharing of food. No commenting on how George’s food is different to everyone else’s.
In school, the canteen staff provide his ketogenic lunch. His classroom assistant and teacher provide keto ice lollies and distractions when birthday cakes or food topics are in the classroom. It is through these extra efforts of the staff at his school, that George copes so well socially. Over time George has accepted that eating anything outside what is given to him by Mummy, Daddy, Granny or Mrs Lacey will make him ill. We can now trust him not to eat food that isn’t his. The diet has not given George seizure freedom but he is much brighter, alert and more energetic. It has been challenging to the family to achieve this dietary treatment for George, but so worth it to see some improvement.
Another big step for George
In December 2013 George had a vagus nerve stimulator (VNS) fitted. This is set to be on for 30 seconds and off for five minutes all the time. It will take many months to see if this will help George, but his learning has already improved. We are also noticing fewer seizures. We are hopeful that this progress will continue, and that in time we can stop or reduce his medicines, under the direction of the neurology team.
It has been a stressful few years getting to know and understand epilepsy. Welcoming baby Matthew into our family, and moving to a house more suitable for George’s needs.
We have met many professionals along the way and have a broad understanding of many different departments within the health service. We are very thankful for all the care we have received. George has good days and bad days. He wears his helmet every day, and uses a wheelchair for long distances and when he is post-ictal [recovering after a seizure]. At the moment George is on three epilepsy medicines, the ketogenic diet and has a VNS implant. We hope that in the future, George will improve to such an extent that his medical team can start to reduce the number and dose of his epilepsy medicines.
As a family we cannot change George’s condition. We hope through sharing George’s story we will change the perception others have of epilepsy.
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Supported by Cyberonics through an educational grant. Cyberonics developed and markets Vagus Nerve Stimulation (VNS) therapy system. Cyberonics has no editorial control on the content.