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Any info on Ketogenic Diet

Wed, 02/09/2005 - 18:07
My three year old son has daily myoclonic seizures, as well as some generalized seizures. He is maxed out on Lamictal. He takes B6, and two weeks ago Zonegran was added to his medications. His seizures have gotten a little bit better, but he has lost words, and has regressed. Prior to this, we tried Topomax, and he had a horrible reaction.We want to try the Ketogenic Diet. I just e-mailed Johns Hopkins about it. Have any of you tried it? Any success? Thank you!

Comments

RE: Any info on Ketogenic Diet

Submitted by angel_lts on Tue, 2005-03-15 - 08:33
Amy, I was on the ketogenic as an adult for one full year. I hated the diet but loved it at the same time. You have to wiegh everything, cant eat inbetween meals, no sugar at all or a seizure will occur. Be ready to pack foods when you go out.....It is a long term thing, be sure you and you child are ready to make a commitment to this.It helped me get rid of many seizures and I felt WONDERFUL on the diet. The fat that I drank (YUCH!) but it was worth it. But because I was an adult, it does not work as well because my brain is fully developed. I decided to stop the diet for my doctor and I knew that I would not get seizure free because I was an adult. But I was going to make a change and I had to look for other options, which was a change of medications. But when I made a change in medications the seizures came back to the same amount I was having when I started the diet. But for children it can help them out alot and possible seizure free. But changing medications and getting the seizures back does not happen for everyone. I was just an adult on the diet and that is different and that was the problem. I still eat sometimes like I am on the diet and it can help with seizures still to this day.I just eat a low carb diet with GOOD fats. We need fats for the brain in order for it to work correctly. Check out my story of things that I have tried and done and how they worked for me in files in my support group.http://health.groups.yahoo.com/group/EpilepsyApproach/Lisa

RE: Any info on Ketogenic Diet

Submitted by crysta95 on Mon, 2005-03-21 - 16:50
Amy, hope and pray your son does well with the diet! My thoughts are definately wiht you and him!May I ask what kind of dose of B6 you are giving him. I would like to talk to Jo's neuro about giving her the extra B, also.Crystal

RE: Any info on Ketogenic Diet

Submitted by Ted_Jacqui on Mon, 2005-06-06 - 22:01

Here is a link to a yahoo group for the ketogenic diet.

Jacqui

 

http://health.groups.yahoo.com/group/ketogenic/

Here is a link to a yahoo group for the ketogenic diet.

Jacqui

 

http://health.groups.yahoo.com/group/ketogenic/

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