Imogen has had epilepsy now for over 6years and we have tried every drug available (as far as I am aware) and many combinations of drugs to no avail. I can't remember where we first heard of the ketogenic diet, but somewhere along the line it entered our thinking. We are very blessed in this area that we have had a dietician, Marian who was funded to enable children like Imogen to go on this diet. Sadly this funding has just ended so we were the last ones to sneak in at the end.
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| Broccoli and hotdog quiche, spinach fried in butter and cream, lemon cheese ball and coconut mik. |
So what is the diet? I hear you cry! Well, the theory as far as I can tell is that most people metabolise carbohydrate to give energy! but it has been found that if we cause the body to metabolise fats instead a by-product of this is something called ketones (don't ask me what they are!) but it has been found that raised ketones prevent can prevent seizures, so this is the what we are doing at the moment with Imogen.
I have to say I hadn't quite grasped how time consuming it would be. Every meal I have to work out the fat, protein and carbohydrate content of each item for the amount being used and make sure they balance properly. Last week Imogen's ketones weren't raising very well so now she is on 25g of carbohydrate a day. (Next time you eat your packet of crisps, chocolate biscuit or McDonalds just have a look at the carb content! She won't be eating any of those any time soon!)
Thankfully there are a few items to help; a useful computer programme that will work out the levels for you once you have input the information, something called ketocal which is a powder that is very high fat that can be used in pizza base, muffins and things like that, and a ketocal drink that we can make smoothies out of. Thankfully Imogen likes all these items which is making life easier.
Today her ketones where up a bit and this was the first seizure free day for a loooong time. I'm really hoping there are many more to come!
