Keto update – stick or twist?

Samuel started the Ketogenic Diet in April. If you have been following this blog for a while you will know that we started off really well, in fact Samuel went without Midazolam for a record time and everyone who knew him said how different he was.

Then the seizures started to creep back in, he was also losing weight as it seemed that he wasn’t absorbing fats. So he was moved onto the MCT version of the diet to help him gain weight. Because of the importance of getting back on top of his weight, we increased the calories, so really Samuel hasn’t been on the ‘proper’ Ketogenic Diet for a while, because of the high calories.

But today his weight finally hit 10kg and the dietician is now happy to start dropping very slowly, some of his calories and carbohydrate. We are really hoping that reducing this side of his diet and therefore returning to a more pure and traditional ketogenic diet will positively affect his seizures.

The real test will be once we are fully back on the proper diet for a while. If we feel that he is benefiting from the diet and his seizures are better, then we will stick with it. But if not, then the twist will be that we will come off. Perhaps we might revisit the diet again in the future, but in the meantime it would be a case of back to just relying on drugs again.

You may think well there are must be lots of anti-epileptic medicines around for Samuel to try, but it’s not that simple. In his two years of life he has already made good headway working through the drug book and some medicines he did try, barely touched the sides. Although there is sometimes scope to increase the dose, the risk is that you end up reaching the ceiling for that medicine and you can’t increase it anymore. That’s why it is so crucial that this diet works for our Samuel. If it works, if we can go back to how things were when he originally started the diet that would be wonderful. We had almost seizure free days – to have that again would be…well beyond words.

So readers, I ask for your positive thoughts and prayers.

Previous keto blog posts - read more about Samuel’s journey on the Ketogenic Diet

Little H is a good friend of Samuel’s and is also on the Ketogenic Diet. Pop over to Little Mamma said and read his positive story.

If you want to find out more about the diet, Matthew’s Friends has lots of really useful information and support.

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5 thoughts on “Keto update – stick or twist?

  1. So glad that Samuel has gained weight :-) Hope that all goes well with the diet. My daughter was on the MCT version of the diet from January 2006 to May 2011 and it reduced her seizures by 80%. The diet was not without its ups and downs though and Matthews Friends were a fantastic support. Fingers crossed!

  2. Well done Samuel for gaining weight. Wishing him all the next for the next phase.
    (on another note – the snow falling theme sadly reminds me of the auras I get before migraines and keeps making me blink.)

  3. Hi! My son was on the Keto diet for 5 years. He started it at 18 months and was the only thing that really started to control his seizures. He has Dravet syndrome, which also has difficult to control epilepsy. We worked out a version of the classic diet ourselves and stuck to it. We had an ng tube, as Joe wouldnt drink liquids although he would eat mushy food. He also had mct oil through the tube. Joe was mostly eating cottage cheese and double cream!

    Good luck with it. It is worth giving it a good go, which it sounds like you are doing.

    Best wishes

    Duncan

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