So we are almost coming up to 14 days since Samuel started the Ketogenic Diet. We have finally got the hang of putting together the recipe, currently it’s: 3:1 ratio – 30mls cooled boiled water, add 1 scoop of SMA LF, use only 14mls and discard the rest, add 20g KetoCal, shake well then add cooled boiled water to make a total feed of 180mls. Feed Samuel 160mls via the pump and once finished add 20mls of cooled boiled water to the feed bottle to flush through remaining feed.
His ketone levels have been a bit up and down. We
thought hoped they would get a bit more stable come the end of week one and the start of week two. But that doesn’t seem to be the case. But he is tolerating the new diet well (ie keeping it in both ends) but we are wondering if it has made him a little constipated which apparently is common on this sort of diet.
But you want me to tell you if I think it’s working, don’t you? I don’t think I can answer that. It’s still only very early days. We did feel that towards the end of week one, as his ketones were increasing, that he had improved. Although he was still having daily seizures, he was sleeping more (in a good way) and when he was awake he did seem a bit more alert. But the problem you see with this boy is that we have bad patches, bloody bad patches, good patches and bloody good patches. So it is really hard for us to say yet whether the new diet is having an effect.
I think we will only be confident about whether it is working or not when Samuel has been on it longer and his ketones are more stable and he is in effect in ketosis.
When I met with the pediatrician last Monday (which would have been Day 7 of the diet). I told him that we had a good weekend before which I had noticed had coincided with his ketones increasing. The pediatrician started smiling and said he is now optimistic that it may work for Samuel. He gave himself away there. I realised that before we started the diet, although he felt strongly that we had to try the diet, he wasn’t expecting it to work. Why? Well because of the severity of Samuel’s seizures. The fact that some epileptic medicines that usually work didn’t even touch the sides with our boy. But Dr H said he was like us, now cautiously optimistic.
Cautiously optimistic. I can live with that. Because in that there’s hope, isn’t there?
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 too. Samuel’s pal Little H is a couple of months ahead of Samuel on the diet. Pop over and have a read of the Diary of the KetoCal Kid
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!).