Hi! Has anyone tried the ketogenic diet? I have been talking to a family here in Denmark where the multihandicapped (not liss.) daughter is on it. Since that, I have been reading about it, but wanted to know if there is any liss. children on the diet and both positive and negative experiences about it.
Yes we tried the keto diet. We were on it for 2 years. Took a few months to settle into. Had about a year and a half of almost seizure free and medicine free, then seizures came back worse than before. The diet is very strict and there are side effects. Consider carefully.
Hi Lily Thanks for your answer! Can you tell about the side affects you noticed? We are far from deciding anything. It is very new to us and we don´t even know if the doctors would recommend it for Benjamin. He has small seizures every day and gets two kind of medicin to control it, but as said it does work perfectly. A great reason for us to even think of the diet is to get of the medication because we are told by the doctor that Benjamin not smiling is most likely because of his medication. That I am very sad about. We know he might not live very long because of a serius heart abnormality and if he won´t smile before he is gone, that would make me very very sad. He had been smiling a bit in his dreams and that face, that is totally a different little boy. He also smiled at me some months ago and I would loooove to see that again. I think that the diet could be good for him. I am afraid that he is very doped of the medication. We also have very very poor eyecontact. Maybe that could be better as well. I have mostly been reading about the diet used for "normal" children, children with "only" epilepsy and they told about serious differences in the childs concentration, motorik and so. I of course know that Benjamin will not be able to do a lot things just becuase of getting of his medication (if we were lucky), but even small things could be great. A smile is to me not a small thing but a very big and important thing, a sign for me that he also is having fun. Now I am just looking for others experiences to know if this diet, with a lot work and maybe consequences is worth to go through for both Benjamin and for us, "just" because of the reason mentioned (and of course it would be great if he had no seizures for his sake).
It was a few years ago now that we did the keto diet. It is not recommended to actually have the diet replace medications, so don't think of that as a reason to try it. I would give carefull consideration to the impact of seizures now, and decide wether you all can live with that. Sometimes messing around with medicines and therapies can make matters all the worse. If you are still keen to try the diet, read as much as you can, from a reliable source. Find somewhere that runs the program, and ask them for information. Do not rely on info on the internet, as some of it is not correct. The diet is very strict and controlled. If its not strict and controlled its not the keto diet!