The child neurologist at the academic children's hospital did mention the keto diet as an option rather fast after our son got the diagnosis Lennox Gastaut and told us this diet was likely to offer a better chance than more medicine for this diagnosis. The keto diet is initiated in this hospital and the rather good effects for kids with LGS are well documented. But at that time we as parents weren't convinced this would be an option for our son, what we heard and read about the diet discouraged us at first, we were afraid to get serious feeding problems, that our son would refuse the food and even to take away one of the very little things he could do well, eating. We changed our mind about trying the diet after we met (thanks to an internet forum) other parents with kids who had booked success with the diet and after we saw and tasted the meals they prepared 'live', which weren't so bad at all. The doctor gave us a very negative impression of the restrictions and keto meals which was more negative than it appeared to be in reality.
Hello Dutch Mom,
My 8 year old has started on the diet. It feels very overwhelming but any reduction in seizures will be very useful for us. He also shows characteristics of Lennox-Gastaut syndrome. Our neurologist was supportive of the diet. It helps when the clinic has dietitian trained in the keto protocol. We first started MAD but now moving to classic ketogenic 3:1. I expect we will move to 4:1.
I learnt about the diets because I have always used an alternative treatment myself - B vitamins (vitamin B6 Prescribed for over 46 years) - I became interested in, and wanted to know what people were using in terms of alternative treatments to control their seizures. I have an extremely rare condition known as PNPO Deficiency (I have had this confirmed via a genetic test).