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.