helpline 01494 601 400

My journey on the ketogenic diet - part 3


2 February 2018

Sharon Ross is following the ketogenic diet in an attempt to control her seizures.  In her third blog she updates us on how things are going.

Here I am on week three of the ketogenic diet and I thought I would update you as to how I was getting on.

Sharon Ross is standing on top of a windy hilltop. She is wearing red glasses and a purple beanie. Her hair is blowing across her face.

More challenging than I thought

I do not want to put anyone off, but for four reasons the diet is more challenging than I initially thought it would be.

Firstly, yes, calculating the correct carb/ fat ratio is tricky and the ketogenic recipes that I found mostly had different ratios to my own so I had to recalculate the ingredients using my own ratios. And it’s time consuming to weigh all your food but most of all it’s taken time to find recipes that I like. 

Changing the quantities in recipes to get the correct recipes has often meant that things did not turn out the way I liked – the crustless quiche didn’t fill me up, so I changed the recipe making sure I was still on my 4g carb/40g fat and added more low carb mushrooms; the mincemeat was too oily, so again I recalculated and the next time I made it with less oil and added an avocado as a fat source for a starter; and the cheese and tomato quiche I simply didn’t like. It will take a long time to get a full menu of meals for me. 

The second reason why it’s challenging is that, for now and least there is a limited amount of food in my diet that I can give to my family.  Quiches with lots of cream, mushrooms in a lot of oil and tomato and pepper oily soup just don’t appeal to my family, although cheesecake with an almond base is a winner. Others might have had a different experience but I feel that although I have to change the things that I eat, t I can’t expect my family to.

Thirdly the diet has a monetary cost. There are cost savings to the ketogenic diet – I can’t eat out any more - at least not while I am getting used to the diet. I can’t impulse buy a chocolate bar or decide to just take a Ben and Jerry’s out of the freezer and finish it off. My staples have become flaxseed, almond flour, extra virgin oil and cream cheese and so our food bill has gone up. And although the NHS is advising me to do this, they are not funding the added expense.

And lastly I didn’t realise how much I was going to miss other food. A very good friend of mine said that she couldn’t go on this diet because it would mean giving up chocolate.  But I have found that it is easy to give up chocolate and even Ben and Jerry’s. but what I miss is bananas, a cup of tea with real milk, a slice of challah - traditional Sabbath bread – and freshly cooked pizza. I just can’t eat them and that’s quite hard.

Challenges as an adult

In the past the diet has been a course of treatment mainly for children.  But my experience as a mother on the diet is that I am facing different obstacles to the one that a child might face.

This is because, although I am getting assistance from my mum, Facebook groups and my amazing nutritionist, no one is doing the diet for me.  I am facing the demands of a very complex diet while at the same time suffering the symptoms of epilepsy.  In my case the symptoms are mainly cognitive – a recent neuropsychologist was a bit baffled when my test results came out as similar to someone with amnesia because I just didn’t come across that way.

I struggle to make a simple meal because, for example, I look at a recipe sheet for a quiche, and go to the fridge to get some eggs and come back and realise that I need some cream as well. I then come back and realise that I need some cheese and so on.  It’s exhausting. 

But I can’t imagine what it would be like to have a tonic clonic seizure (or a partial seizure, complex seizure, absence seizure etc) and then worry about complying to the diet.  I’ve had three tonic clonics in the past and it took me a good few hours to recovery from them. 

I am sure that excellent advice and care would be given to those on the diet who had a seizure but it would make complying with the diet more challenging. However, like me I guess people who are having seizures are hoping that if their seizure activity is controlled then the diet will become easier to manage.

Cooking for the family too

And the other reason my experience of the diet is different from a child’s is because I am also managing the diet of the rest of the family – I am still peeling potatoes, boiling pasta and shopping for food for the family that I will not eat.

However,  I only have the deepest respect for any ‘keto’ mum or dad who lovingly makes food for their child and tells them that they cannot eat the same food as their siblings, that they can’t have any sweets and please don’t eat an apple that a friend gives to you at school. 

And I also have immense respect for any ‘keto’ child who knows that their parents are doing what’s best for them and so does exactly what their parents say even though it must hurt inside sometimes.

As I said, I don’t want to put people off the diet.  I am told that the diet gets easier once you get yourself into a routine and your knowledge of the diet increases.

If this diet means that I can go to the fridge and get the eggs, cream and cheese at the same time  then the hard work will definitely be worth it. 

Although for some people the diet can provoke changes in seizure activity very quickly (as in Meryl Streep’s film First Do No Harm) for me that isn’t the case.  But that doesn’t mean they won’t happen.  Sometimes it takes time.  So I will continue however hard it is and see what happens.  I will let you know what happens.


The views expressed here are those of the author and not necessarily those of Epilepsy Society.


More information

You can keep up to date with Sharon’s blog here


Find out more about the ketogenic diet.