For the last month or so we have been slowly weaning Hugh off the ketogenic diet- the diet that dramatically changed his, and our lives, when he started it just over three years ago. The wean, so far has been going well. His body hasn't had much carbohydrate at all for the last three years so we are very slowly increasing his intake on a week by week basis. The carbohydrate is in a powdered form and is added to his daily tube feed. He is currently having about the equivalent of a small box of raisins a day- still a tiny amount! His body needs to adjust; his gut will have to get used to this increase in sugar and his body will have to learn to start taking energy from the carbs rather than fat as it's been used to. The increase in carbohydrate is gradually bringing down the ketone levels in his blood- the by product of the diet that has the crucial anti-epileptic affect on his brain.
Optimal ketone levels for seizure management are between 3-5 and we are consistently well below that now. So far (and please touch wood as you read this) there has been no real change in his seizure activity, other than a few extra night time seizures which have caused him no problems. We're not out of the woods yet though- when Hugh started the diet the effect was almost instant, his seizure decreased dramatically straight away, even before his ketones had reached optimal levels. So, in my humble and inexperienced opinion, the reverse may be true- even with a very small amount of ketones in his blood, it could still be having an anti-epileptic effect. Time may tell I suppose.
We're ready to move to the next phase now which is introducing a new feed. Later this week, we'll begin replacing one feed a day with 'nutrini multifibre' which is what he was on before he started the ketogenic diet.
Just to be clear, as a few people have asked me recently, Hugh will still be fed by a tube. He's tube fed because he's not always able to swallow food safely and I don't think he can chew at all. He was tube fed before he started the ketogenic diet. On a day to day basis his feeding regime will remain unchanged really, just the content of his feed will differ. But I hope that the reduced amount of fat in his diet will help with his other gastric issues such as reflux and constipation, though that remains to be seen.
All in all the whole process is slow, steady and carefully controlled. We're testing his blood daily to see how his ketones and blood sugar levels are reacting and keeping a close eye out for any changes to his normal seizure pattern.
I'll keep you updated with any changes and his progress, but far things do seem to be going well. (*Touches every wooden surface available).