I’ve been debating all morning about whether to publish this post. I’m not sure why. I mean do I really think I’ll be tempting fate or am I worried I’m just wrong? But I really don’t think I am.
I think I need to finally say this out loud because everyone around me is saying it and perhaps I just need to get a grip and say it myself.
So here goes,
the ketogenic diet is working.
There I said it. It shouldn’t be working quite as effectively as it is. His ketones are very low and not in the therapeutic range where you could say he is in ketosis. But the diet is working. It seems that Samuel is as usual making up his own rules once again.
It’s not just me that has noticed a difference in Samuel. He spent a whole day last week at Julia’s House and they were all in agreement that he was far more settled and barely displayed any of his normal twitchy behaviour. His Dad, who only seems him during evenings and weekends because of work has barely seen him seizure at all over the last couple of weeks. I’m keeping a note of all his seizure activity and it tells me that he is only having about three seizures a day and they are all quite short ranging from about 30 seconds to just over two minutes. For Samuel that is incredible.
The diet is working. It’s only a month in and I am saying out loud. The diet is working.
To spend the day with Samuel and not have to sit and watch him regularly seizure, not have to see his little body regularly twist and stiffen as he cries, not have to keep an eye on the clock in case I have to start thinking of getting out his emergency medicine – it’s a luxury, a dream, a wonderful feeling that I can’t explain.
We still have a couple of months to go on the trial before it is agreed that Samuel stays on the diet long-term. But a month in, things are looking good, very good. My dear reader I will say it one more time. The ketogenic diet is bloody working. But if it can have this effect when his ketones are low, what can we expect when they are high? That thought just makes my heart flutter.
The Ketogenic diet is a high fat and protein but low carbohydrate diet that is used to treat difficult to control epilepsy in children. The diet mimics aspects of starvation by forcing the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then moved around the body and is particularly important in fuelling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures.
More information: If you want to find out more, please have a look at Samuel’s Ketogenic journey and you can also read a round-up of all my blog posts about Samuel’s Ketogenic adventures. Matthewsfriends.org is a fantastic resource full of really useful information and case studies about the Ketogenic Diet (and explain things much better than I do!).
This post is part of the Celebrate Blogging Challenge. This world of special needs and disabilities has many rocky roads, we will find ourselves on many rollercoasters along the way. But, there are a lot of positives. Through our adventures so far, we have met a lot of amazing, supportive people. It has made us stronger. We have learned to look at the world through new, wider eyes and find ourselves celebrating what to others may seem such a small achievement but to us, it’s the world. It’s a tough world, but there is so much to celebrate. Our children. So please join me each week and post about what there is to celebrate in your world during the past week. I’m looking forward to reading your posts and celebrating with you.
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