[Research] Ketogenic diet research may lead to new epilepsy drug treatment

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Looks like a step in the wrong direction to me. They are starting from a potentially false premise.

A modified Atkins diet appears to be an effective and well-tolerated therapy for children with intractable epilepsy, based on results from this small, open-label prospective study. At the 6-month period, 65% had a >50% response, and 35% had a >90% response. A striking similarity exists to a large published prospective study of the traditional ketogenic diet, in which 51% had a >50% response and 32% had >90% seizure reduction, with an intent-to-treat analysis (11). Also in that study, 71% were able to stay on the diet for 6 months, similar to the 80% in this study.

This study raises important questions on the current use of the traditional ketogenic diet. The first is whether higher ratios with more fat, less protein, and fewer carbohydrates are truly necessary for efficacy. Our results also question whether ketosis is as important as previously reported (10,12). Eighty percent of children with a loss of large urinary ketosis over the study period did not lose seizure control, and the same percentage with trace or zero ketosis at 6 months were still improved. Preliminary efficacy of a low–glycemic index diet with lower levels of ketosis also suggests this may be accurate (13).

http://www.coping-with-epilepsy.com/index.php?p=modified-atkins-diet

I would like to see more research into Paolo Mainardi's NPY/ALAC hypothesis.
 
Well, there's some debate in the ketogenic world as to which is more important for seizure control -- ketosis or glucose levels.

The nutritionists at Johns Hopkins are adamant that high ketosis is essential for seizure control, but usually, if the ketones are high, the glucose levels are low. These are people who have worked for 18 years with the keto diet with hundreds of children.

Usually, those on the classic keto diet are required to check blood glucose levels and urine ketone levels daily -- at least until seizure control is stable.

However, a number of us keto parents have observed our children have high ketosis but also high glucose levels. There may be a few explanations for that. Most of us are testing the ketones via urine strips, and the results may be skewed if a child is a bit dehydrated (which would show higher ketones in urine). Also, blood sugar can be affected by stressors such as illness or even seizures will raise the glucose levels for about 30 minutes or so.

In the past few months, we have had difficulty with seizure control, and also have noted that Jon's glucose levels are higher than normal, even though the diet ratio is just as high as ever (in fact, a bit higher), and he has consistently been at optimal ketone levels -- (blood testing as well as urine testing).

We believe Jon has some underlying illness that is provoking the higher glucose levels, and probably lowering his seizure threshhold. We already discovered his thyroid levels were low, which could affect metabolism and fat absorbtion (thus skewing the diet), and he has initiated treatment for that.

But the problem with a medication that imitates the action of the ketogenic diet is that the medical world still hasn't quite put their finger on what exactly causes the diet to work. The neurologists and nutritionists who have worked with it for decades are often mystified.

Another issues that occurs to me is that trying to chemically imitate the effects of the keto diet may seem like a wonderful opportunity for kids who are picky eaters and/or parents who are overwhelmed by the idea of spending extra hours in the kitchen and at the computer trying to calculate out meals that will appeal to the kids -- but I just wonder what side effects would accompany the chemical equivalent of the keto diet. In fact, one of the reason many parents are so enamored with the diet is that not only have AEDs not worked for our kids, but the effects are so dreadful. Not that the ketogenic is completely benign, but so much gentler than any pill we've tried yet (and that would be....let's see...about 9 different medications at this point)
 
We have tested ketones as well as blood glucosis for a while and didn't see any balance between both values together and seizure control. Ketosis has to be 3.5+ in our sons blood for seizure reduction. We have noticed that higher glucosis (which is 5+ on the keto diet, 3-4 is the goal, lower than normal) usually comes with too many calories. Ketosis still can be okay on too many calories but glucosis becomes higher. This confirms the diet works thanks to calory reduction.
 
You may have something there with the calories, because our Nutritionist increased Jon's calories in March because he was underweight (he lost about 3 kilos due to a bad stomach virus), and also lowered his ratio to 3.5 -- this was when he started having breakthrough seizures.

He's now gained the weight back, and we bumped the calories down a little bit so he's maintaining, but he still needs enough calories to grow, so not sure if can bump calories any lower.

He's 8 years old, and weighs around 20 kilos (about 44 pounds) and is about 46 inches tall. He's about the size of a 6 year old (in fact, his doctor keeps thinking he's 3)
 
One thing we have learned during the 8 years on keto is never to change more than one thing at the time. Tweaking the ratio AND increasing/decreasing calories together is not wise because you can't tell afterwards what causes the effect.
We have had periods with breakthrough seizures, most times together with blood ketosis under 3.5 In most cases lowering the calories helped to get him stable again but that took several weeks to even several months. Best way to get adequate ketosis again is fasting (skipping meals) or give 1/2 meals for a fwe days.
Being underweight is a problem, increasing calories is only compatible with the diet together with the same or even higher ratio. Don't give more calories and lower ratio together, because he does get more carbs on lower ratio AND more carbs because of more calories. The effect can be insufficient ketosis and/or higher glucosis and breakthrough seizures/seizure increase.
I woudn't lower calories any further because he needs to grow, I would upper the ratio again to 4:1 (or perhaps you can try 3.8:1)
 
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Yes, we'd just gotten a new nutritionist (the old one went on maternity leave), and the new one had only a few months experience with the diet.

One thing is that by raising the calories and lowering the ratio at the same time, he went from 2.6 carbs per meal to about 4, which was a pretty drastic change.

We went back to 4:1 as soon as he started having seizures and have been there now for 5 months, but still having seizures -- they were few and far between at first, but almost daily now.

We're slowly adding in some MCT oil in hopes that it will put him in deeper ketosis (his blood ketones are around 4.5, and we're thinking if they can get up to 5 or 6 we might see more control.
 
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