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

I do not want to put anyone off, but there are four reasons why the diet is more challenging than I initially thought it would be.  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 yes it’s time consuming to weigh all your food but most of all, and something that I didn’t think about before I started the diet,  it has taken me time to find recipes that I like.  Changing the quantities in recipes to get the correct recipes has often meant at first I was eating things that I would not of, under any other circumstances have eaten  – 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 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 on 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).  I thought I could convince them in the beginning but now I know that that just won’t be possible.

Thirdly the diet has a monetary cost.  There are cost savings to the ketogenic diet – I can’t eat out anymore (at least while I am getting used to the diet), I can’t impulse buy chocolate bar, or decide to just take a Ben and Jerry’s out of the freezer and finish it off. But 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 are 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 (even Ben and Jerry’s chocolate fudge ice cream) but what I miss is bananas, a cup of tea with real milk, a slice of challah – traditional Sabbath bread – and freshly cooked pizza. Before I started the diet it was the logistical nightmare that was concerning me the most, but I now realise that is just part of it and missing some foods is quite hard especially when they are in your kitchen cupboard just wanting to be eaten.

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 I 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 whilst at the same time suffering the symptoms of epilepsy.  In my case the symptoms are mainly cognitive – a recently 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. Thus I struggle to make a simple meal because for example look at 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 and then come back and realise that I need some cheese and so one.  It’s exhausting.  But I can’t imagine what it would be like to have a clonic tonic seizure (or a partial seizure, complex seizure, absence seizure etc) and then worry about complying to the diet.  I’ve had four clonic tonics in the past and the thing about them that I don’t think that most people realise is that afterwards you do not feel ‘with it’.  Personally 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.

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 NB – 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 (plus do a million other things) 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.


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A blog similar to this was published by the Epielpsy Soceity on 2nd February 2018 here.

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