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ProfessionalDreamer

Ketogenic Diet

If you follow this diet plan how has it changed things for you?

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Re: Ketogenic Diet

The Ketogenic Diet needs to be monitored by a physician. The diet hasn't shown to be very effective in adults. The diet can be very difficult to follow because the rations have to be carefully measured out between proteins, carbohydrates and fats. There has been some studies done at Johns Hopkins about the modified Atkins Diet that has been shown to help some patients, but again, I believe that the success is noted more in children. The diet is often tried when medications have failed.

My daughter was on it for 8 months when she was three years old but it only worked for about three weeks. It can be very effective but often is the case that the patient must be on it for a number of years. The traditional diet isn't very palatable but there's a Keto group out there that have created some recipes.

Karen

Re: Ketogenic Diet

Hi ProfessionalDreamer,

The original Dr. Atkin's diet taken to zero carbohydrates is the best aim for a ketogenic diet (carbohydrates always sneak in somewhere & somehow).

Being in Ketosis on a zero carbohydrate diet seemed to stop my daily minor simple partial seizures in about a couple weeks, and my monthly clusters of stronger partial seizures stopped also (this was more than a decade before they kindled into secondarily generalized tonic-clonics during clusters). I was in my mid-twenties, and I used the diet to reduce body fat, while lifting weights to build muscle mass to reach a specific body-muscle/body-mass ratio. I didn't know that my "spells" of simple partial seizures were a form epilepsy back in the mid-to-late 1970's.

With both zero carbohydrate diets and fasting, hypoglycemia is a frequent problem. Hypoglycemia can often mimic epileptic seizures, and in extreme cases, be life threatening. If Ketosis is directly responsible for reducing seizures, long fasting probably would have the same effect, but fasting is often regarded as reducing and burning body muscle mass also, and not just body fat.

Avoiding carbohydrates is very difficult because many foods that should be carbohydrate free often have carbohydrates processed into them, and while Ketosis is easily monitored with Ketostix testing strips, it's easy to accidentally to go out of Ketosis with one erroneous snack. Ketosis often results in a strong breath odor that is difficult to avoid without drinking fairly large amounts of water, to the point where water intoxication may become a threat.

While determining Ketosis is a yes-or-no test without analog measurement being much of a problem, back in the mid-1970's, only analog diabetic test strips were available to monitor blood sugar levels, at about a dollar a test. Now Digital Blood Glucose test meters make testing blood sugar levels with any excessive sense of weakness or body chilliness, (with hot flashes or not), makes it easier now to avoid possible severe hypoglycemia, and to develop a measured routine of eating frequent carbohydrate-free snacks, especially before retiring to bed. My more severe bouts of hypoglycemia had the most unpleasant effects of sleep paralysis and waking feeling ice-cold after a few hours of sleeping without eating a big enough snack before going to sleep.

Eating frequent snacks versus distinct meals, having to eat at home or carry your own snacks, and maintaining a balanced nutrition with vitamin/mineral supplements, makes the diet very difficult to maintain. Compared to prices 35 years ago, zero carbohydrate foods are much more expensive than carbohydrate loaded foods, and the selection seems much more narrow now in regular grocery stores. Food fiber is a major problem with avoiding unexpected carbohydrates also, while maintaining digestive regularity.

When I reached my body mass ratio goal, I slowly went off the diet, and my partial seizures slowly returned. I discovered that my partial seizures were independent of hypoglycemia, and that I could induce a spell of "reactive hypoglycemia" by going on a brief carbohydrate binge or consuming too much sugar in a short time period. I maintained my body mass ratio for about a decade, until frequent migraines disrupted my exercises and added body weight seemed to moderate the migraines, then a few years later, partial seizures started to cause me to drop heavy weights during exercises.

While zero carbohydrate diets don't have the same dire side-effects as AEDs, a person needs the wealth and health to tolerate the expenses and drawbacks with both choices.

Tadzio

Re: Ketogenic Diet

My daughter's seizures were not severe/often enough to consider ketogenic.  However, she did Modified Adkins for a period of 8 months and we were able to bring the amount of medication down.    We could never fully get rid of medicine but we were able to lower it and keep it at the lower level once we gradually introduced carbs back.  For us, it was worth it but I know it would not work this way for others. 

Those with feeding tubes they say have the easiest time with ketogenic diet.  My daughter was 13 and modified was hard enough so I applaud any of those that are able to follow the seizure diets.

Re: Ketogenic Diet

There are clinical studies going on now with the Ketogenic Diet and KetoCal. 

Karen

Re: Ketogenic Diet

Hi Karen,

Some unusual sounding claims are still showing promise. Near the end of December 2010, I posted about the "Face Cream" cure of epilepsy:

I've been searching for the "Face Cream" cure of epilepsy!!! The way it sounds, 700 to 800 calories of the ingredient gives the same preventive factor as the Atkin's Diet without the diet restrictions, other than eating the face cream stuff. I found it by "Fearless Woman Lacks Key Part of Brain" (both amygdalas) and http://news.sciencemag.org/sciencenow/2010/12/a-supplement-to-stop-seizu...
Eating Triheptanoin sounds difficult, despite the sauce. Which health shop is it in? http://pepck-and-the-ketogenic-diet.com/Triheptanoin-odd-carbon-fats.html

"Lilith epilepsy" is near the top in Google search, and Q******** (spirit of epilepsy ignored by Maimonides?) is now with the lone listing. Looks like such a short name would have many more "random" matches. I wonder if it would be dangerous to use it as a domain name, etc.? Or will I end up really perplexed???

The latest 2013 search results return such as:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3422680/
("In this review we discuss the current knowledge of triheptanoin in terms of its anticonvulsant and metabolic effects and its clinical potential in comparison to the ketogenic diet.")

http://www.ncbi.nlm.nih.gov/pmc/?term=triheptanoin%20epilepsy

http://www.pepck-and-the-ketogenic-diet.com/Triheptanoin-odd-carbon-fats...

http://www.drugs.com/clinical_trials/ultragenyx-initiates-new-developmen...

Tadzio