Samuel started the Ketogenic Diet in April. It was quite soon that we could see a positive change in Samuel and his seizures. Despite his ketones being low and sometimes very up and down, there was a noticeable difference in how settled Samuel had become. It wasn’t just us that noticed but his carers at Julia’s House and our friends and family.
But over the last few weeks we had noticed that Samuel’s seizures had started to increase and he had also begun to lose weight, which in turn was affecting his ketones. It seems that Samuel had not been absorbing his fats properly and his dirty nappies, let’s just say they looked very fatty!
So we went into hospital for a few days to try a new enzyme called Pancrex to help him absorb fats. It didn’t seem to be making a big difference. He’s being weighed regularly and the scales are showing that his weight isn’t improving, in fact it seems to be dropping.
We are now moving on to Plan B. We are starting Samuel on the MCT (Medium Chain Triglycerides) Ketogenic Diet. If Samuel fails to gain adequate weight on this diet then we will be coming off Ketogenic Diet all together. If we do have to do this, it may not be the end of the Ketogenic road for Samuel. If we come off the diet, he puts on a good amount of weight and the experts are happy, then we may revisit the diet once again.
As Samuel is fed via a gastrostomy button, the diet is made up in a liquid form. Preparing his feeds feels like a cookery lesson (but with no added spices!). For example, today I’m feeding him 100ml Ketocal (Ketogenic liquid that he was on before), 12ml Liquigen (MCT fat), 3ml Maxijul (carbohydrate), 3g Carbohydrate free mix – the rest of the feed is made up with water. This doesn’t come to us in a made up liquid, we have to put it all together ourselves.The quantities and ratios will be tweaked as time goes on but this is our starting point.
What is MCT Ketogenic Diet?
Most naturally occurring fats are called triglycerides and usually they are Long Chain Triglycerides which take longer to metabolise than carbohydrate and protein. MCT fats also occur naturally, the most abundant source is coconut oil and MCT oil is refined from coconut oil. This type of oil is different because it is metabolised in a different way than LCT fats and a lot quicker too and because of this it produces a lot more ketones.
The rationale for the MCT diet is that because the MCT oil is more ‘ketogenic’, it is possible to increase the levels of carbohydrate and protein, and still achieve the basic objective of the diet which is the body going into ketosis. Because this oil produces a lot of ketones quicker than LCT fats – this oil is used as a ‘supplement’ with this version of the Ketogenic diet and it therefore allows more carbohydrates and calories to be taken in whilst still achieving ‘ketosis’ and hopefully the beneficial effects of that ketosis.
(Taken from Matthew’s Friends’ leaflet)
To find out more about the Ketogenic Diet, please visit Matthew’s Friends. Matthew’s Friends is a charity set up to support families like ours with a child on the ketogenic diet. They have provided a lot of support and information to Samuel’s dieticians.