This is my blog about my first visit to the ketogenic clinic at the National Hospital of Neuroscience and Neurosurgery in September. A similar version was published by the Epilepsy Society the following month.
Sharon Ross is about to start the ketogenic diet. This is the first in a series of blogs about what it involves.
My name is Sharon Ross and I have an unconventional type of epilepsy and I am going to start an unconventional type of l treatment for it. I have frontal lobe epilepsy – sometimes it seems like I have dementia and my neuropsychologist said I have similar symptoms to someone with traumatic brain injury or who has suffered a stroke. My memory, processing, decision making and problem solving are poor. I used to look at a weather forecast and wonder why anyone was interested in them – lots of numbers and pictures in a graph seemed dull. But now I realise that people take an interest because they need to decide what clothes they should wear or how the weather will impact on their day. However, I can’t translate the information on the chart into what it means for me because my mind is a constant fog. Thus frontal lobe epilepsy is not a pleasant condition to live with and I want, indeed need, to find a cure. The brain fog is caused by irregular epileptiform activity and although my medication is treating the atypical seizures that I was having the epileptiform activity is still occurring. I have tried lots of medications to control it but they haven’t helped so in the next few weeks I am fortunate enough to be starting the ketogenic diet and I am writing a blog so that you can join me along my journey.
The ketogenic diet is a high-fat, adequate-protein, low-carbohydrate diet that is a recognised treatment for epilepsy. Much of the data regarding its efficacy comes from studies in children, but there is now a growing body of evidence for its use with adults. The exact mechanism of the ketogenic diet remains uncertain. The diet provides fat as an alternative fuel source for the body, producing metabolites called ketones and other associated biochemical changes can reduce seizures and control epileptiform activity.
Before I went to my first appointment at the hospital I already knew quite a bit about the diet and how I thought it would impact upon me. I am married with three young children, one of whom loves foods high in carbohydrates, especially jacket potatoes. The ketogenic diet is not a healthy one and my family cannot go on it with me so I know that managing my family’s eating requirements and my own at the same time is going to be tricky. I live about an hour away from the hospital which is useful, but I also know that often the dietician will catch up with me over-the-phone, so the distance is relatively inconsequential. Because I am ill I don’t work, but I see this as a plus because it means that I can devote time to planning and cooking meals – you need to make time for this diet to work. . As I said my illness means that planning, and indeed most things are difficult for me. Therefore I have a secret weapon – my mum. Everyone needs a good mum when they are going through a hard time and I am very fortunate enough to have one. My mum has therefore ‘volunteered’ to help me with the planning and preparation of meals – not for the rest of my life – but just until, hopefully, my brain starts to function as it should and then I will be able to do it by myself.
I am also an observant Jew. Before the first appointment I thought the fact that I already take food with me when I go out on day trips when I know that I won’t find food that fits my dietary requirements would be helpful but I learnt that being kosher is not a benefit on the diet. Being kosher means that I do not eat food derived from a pig or shellfish and I do not mix milk and meat together in the same meal. This is a problem for a Jew on the ketogenic diet because a traditional ketogenic meal is essentially treif (unkosher) – the suggested week’s meal plan I was given has for example dishes such as chicken breast topped with cheese AND bacon, sliced ham with side salad as well as prawn mayonnaise. Treif is high fat and therefore good for the diet. But I have my second secret weapon – Facebook. I have found a few kosher, vegetarian and vegan ketogenic Facebook groups and I am hoping they give me inspiration for non-treif ketogenic dishes.
My first appointment at the clinic took place with a dietician and a specialist in metabolic medicine. They told me a bit about the diet, some of which I already knew and were honest about improvements I was likely to see – 40-50% of patients of patients will have an improvement to seizures after three months and on average seizures will reduce by 50%. They also said that they would be monitoring my overall health throughout because nobody wanted one illness to be treated but to be replaced with another (for example I had a blood test to measure my cholesterol level – if it is high I will not be allowed to go on the diet). I I think the main point of the meeting was for them to outline how challenging the diet would be and then for me to go home and think about whether I really wanted to do it. The diet is not going to be easy and you would only do it if you were desperate and I am desperate.
The next stage is a half day information session with other people also starting the diet at the hospital. I will then spend the first week slowly weaning myself onto the diet and then I will start in earnest. I will let you know what happens.