I did not do too badly at school, but last week I went to the hardest lesson of my life – a half-day course on the ketogenic diet at the National Hospital of Neurology and Neurosurgery in London.
It started quite gently – the nutritionist asked what I, along with my mother, the other patients and their family members (who like my mother had come along because they wanted to assist their loved ones in their new undertaking) knew about the diet.
We were a well-informed lot – we knew it was a low carb/high fat diet; we knew that ketones were a bi-product of the diet that could help to reduce seizure activity and we knew that it was going to be hard work. Our little group thought we were doing quite well.
And then she hit us with the tables. A very long list of tables. They listed the amount of carbohydrates in various products. For example did you know that 8g apple, 13g onions and 250g mushroom each contain 1g carbohydrate? And don’t get me started on bread, rice or pasta (11g sliced white bread has 5g carb etc etc). These are the tables for which the next three months, at least, we were going to live by. Our little group knew we had a lot to learn.
Based on my weight, height and activity levels the nutritionist had calculated the amount of carbs and fat I must have at each meal or snack – each patient had different targets, but at least we didn’t have to calculated protein. There was to be no wiggle room she stressed – I must have the amounts she had stipulated, no more, no less at every meal and snack.
So I must know these amounts like a mantra – breakfast, lunch and dinner 4g carb, 40g fat at each meal; and 3g carb and 25g fat for three snacks throughout the day. Everything I eat must be measured in advance like a military exercise.
And then came the crunch time – the calculations. What should we do if we wanted to eat something not on the list? For example I want to use my favourite pasta sauce (to flavour fish or meat but definitely not pasta). It contains 11g carb per 100 gram. How much of it can I use for my lunch? And so, under the guidance of my nutritionist, I learnt to calculate that I can have 36g pasta sauce with my meal to meet my carb requirement. Our dietician/maths teacher was patient with her patients as we learnt our new life skill.
But that’s not all. We had we had to take into account our fat requirements. The tomato sauce has 2g fat in it per 100g. That’s way below my fat target. So I’m going to have to add some double cream to my pasta sauce which could be quite nice and then have a high fat dessert. Of course I still have to limit carbs and also remain kosher – Jewish laws stipulates that I can’t consume milk and meat together in the same meal, so I will have to have tomato and cream sauce with fish which doesn’t sound too bad. And to top it off, at least at the beginning of the diet, I cannot use meat or cheese or oily fish towards my fat target.
It was indeed a very difficult lesson to take in – and with a foggy brain like mine, this is the hardest challenge of my life.
But the nutritionist was upbeat – it is possible came back the message. You can do this – other people have. But it won’t be easy and there are no guarantees that it will improve your cognition or reduce seizures. She was on our side – I’ll be there to help you all the way, adjusting the plan if necessary, she stressed. But, the other patients, like myself, must have been pretty desperate – fed up with the epilepsy that is destroying the quality of our lives, because that is the only reason you would take this diet on.
I came back from the seminar with my goody bag – two recipe books, one electronic device which will measure my ketones and glucose levels daily via a blood test, lots of tables containing lists of carbs and fats in various products and notes about what to do if you are unwell (keep to the diet and check meds are low carb!). Plus we also got the number of direct line to the dietician, which is now listed as a favourite on my mobile phone.
My mother and I were exhausted. We had entered into a world that we didn’t know existed. We were uncertain whether we would be able to stay the distance. But we must try. So next week, after spending sometime meticulous planning each meal I will start the diet – just with breakfast at first and then slowly building up over a week to include every meal. I will let you know what happens.
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A similar blog was also published by the Epilepsy Society here.