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ketogenic diet

The Ketogenic Diet; How to Make a Good Thing Better

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The ketogenic diet has been a powerful tool for seizures forever.  Longer even then the drugs to treat seizures that are commonly used.

The unfortunate fact is that natural approaches to seizures are almost always the last tool recommended by neurologists, despite the fact that they typically perform better than medications.

Maybe one of the reasons that doctors don’t recommend natural approaches like the ketogenic diet because they require a much greater commitment to care than does taking a medication once or twice a day.  But this decision should ALWAYS be left up to the patient—it is not your doctor’s choice to decide whether or not you will make the commitment.

There are basically two “problems,” if you will, with the ketogenic diet.  One is compliance (needing to avoid carbohydrates can be too restrictive for some, especially with hidden triggers in all kinds of foods) and the other is effectiveness.

What if these two issues could be address with additional tools?  And what if these tools were the same?

This cannot be said of medication.  Let’s say you’re on Topamax for your seizures (for the sake of simplicity we won’t go into how often epileptic patients end up on multiple medications).  Really the only options for you to increase seizure control would be to increase the dose.  And along with that added dose comes greater side effects.

(And just in case you thought you’d try the ketogenic diet along with your medication, recent research suggests that certain anti-epileptic drugs can actually reduce the effectiveness of the ketogenic diet–this should be of grave concern to anyone on anti-epileptic drugs.)

And the risks of increasing your anti-epileptic drug dose includes getting shot by overzealous video game addicts who have played one too many zombie-killing games.  That and drooling on a new shirt.

Or you could always add another medication.  Although most often this is mere guesswork and just increases the side effect list without a real improvement in quality of life.

This is not going to be the case when you add tools to the ketogenic diet.  Adding tools could mean that you need to adhere to a slightly less stringent protocol or that you could get even better seizure control.  Just imagine living life on the edge by staring into a strobe light or going to see Blue Man Group.

Let’s cover these two options separately.

First has to do with modifications to the standard ketogenic diet.  Some of these are modifications, while some of them I’m including because they are diets that you should be aware of.  The best resource, unquestionably, is the Charlie Foundation, which was formed to promote the use of the ketogenic diet.

  1. Standard ketogenic diet—this one is the most restrictive, with a 4:1 ratio of fats to carbs/proteins.
  2. MCT ketogenic diet–this diet uses MCTs from coconut oil as the main source of calories, allowing for a higher carb intake and more variety in the diet
  3. Modified Atkin’s Diet (MAD)—the ratio is less restrictive at 1:1 of fats to carbs/proteins
  4. Glutamate/Aspartate Restricted Diet (GARD)—designed to restrict the intake of the excitatory neurotransmitter glutamate found in certain foods (the best resource on the specifics can be found here).

All of these can be extremely powerful natural tools for managing seizures.  The clinical studies have been done and the anecdotal stories from patients are everywhere.  I remain amazed by one particular group on Facebook specifically geared towards Diets for Epilepsy.  The specific knowledge of the people in this group has continually reminded me of how much I have to learn.

One of the problems with the ketogenic diet is that we just don’t really know how it works specifically.  There is lots of educated conjecture, but nothing to date has nailed it.  Some theories about how the ketogenic diet works include:

  • Alteration of the gut bacteria, changing the neurotransmitters released from the gut to a less excitatory pattern
  • Avoidance of gluten on the ketogenic diet (gluten has been established as a player in many persons with epilepsy)
  • Change in dietary fat intake since fat plays such a major role in brain cell function and health

Besides these theories, looking at it from a deeper biochemical level, ketogenic diets are known to increase levels of a compound in the brain called hypoxia-inducible factor-1α (HIF-1α).  HIF-1α is a compound that is released in response to lowered levels of oxygen.  Basically a protective compound released that causes the brain to go into “uh-oh” mode and snap to attention, leading to all kinds of VERY positive changes in brain cell function.

Besides HIF-1α, there is also evidence that the ketogenic diet can activate Sirt1 in brain cells.  For those of you not familiar with Sirt1, it is a gene that does all kinds of wonderful things in our body and is considered by some as a “longevity gene.”  Well-known is its ability to increase both the number and function of the mitochondria in cells.  More mitochondria means more ATP with less by products.  More ATP means a much healthier brain cell able to control firing and thus seizure activity.

Thanks to the author of this particular article, we can look at this mechanism of the ketogenic diet and see if there are other tools that we can use to make the ketogenic diet even more powerful.  The author suggests that the biochemical changes induced by the ketogenic diet can go as far as helping the brain cells “clean house;” removing damaged mitochondria within brain cells.

Here are some ideas of how we could help this process naturally:

  • Berberine, a compound found in certain herbs such as goldenseal.
  • Metformin (not a natural approach and not my preference, but if a drug like metformin could reduce or eliminate the need of far more toxic anti-seizure drugs, well….).
  • Compounds known to increase Sirt1 activity such as nicotinamide riboside and resveratrol.
  • Medium-chain triglycerides (found in coconut oil)
  • Compounds known to increase the formation of ketone bodies (the compounds formed during the ketogenic diet from the higher intake of fats and very low levels of carbs) like carnitine and hydroxycitrate.

These are just some of the tools that could work.  This list is practically endless as there are a lot of other natural compounds that affect this pathway.

Interestingly, many of these approaches are already well-known to patients using the ketogenic diet.  Carnitine and coconut oil are common additions to the diets of people on the ketogenic diet.

If these tools can help to increase the effectiveness of diets for epilepsy or can make less restrictive diets work for others, this would be a drastic change to the way medicine handles seizures.

If this type of approach seems to make more sense to you then guessing which seizure med you should try next, then I’d strongly advise you joining the Diets for Epilepsy Facebook group as well as getting your hands on a copy of my Migraines and Epilepsy book.

Ketogenic Diet for Infantile Seizures

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SIMPLE DIET EFFECTIVE FOR INFANTS WITH SEIZURES? I have never understood the reluctance of neurologists to strongly recommend the ketogenic diet for patients with seizures. Studies strongly support it’s effectiveness and safety, many times above anticonvulsant meds. In this particular study of infants with seizures, the average number of anticonvulsants was 3.6. 3.6 medications with unknown effects on the brain and brain development. 2/3 of the infants were responsive to the ketogenic diet. Why, why, why would this NOT be the first line approach to infantile spasms? Or, at the very least, initiated immediately along with AEDs. This goes for children and adults as well.

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Can Diet Control the Worst Type of Seizures???

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There is no way that something as simple and uncomplicated as diet can manage the worst-case scenario of epileptic seizures. Not when we have so many powerful drugs to control seizures.

This would seem to be the attitude of most neurologists because diet is usually the absolute last thing they would ever mention, and that is only after every anti-epileptic drug on the planet has not worked. But here’s a scary statistic: In only about 30% of the time does the first anti-seizure medication work to control someone’s seizures. The more medications that are tried, the less likely the next one is going to work. Ultimately, the number of epileptics who do not respond fully to medications may be as high as 40%.

Not good.

Status epilepticus is a state of perpetual seizures that can be fatal and usually needs some type of emergency treatment to control the seizures. In the ER, treatment usually starts with sedatives like benzodiazepine (Valium, Xanax) or, if that doesn’t work, anesthetic agents like propofol (although recent studies suggest that this actually increases the risk of infections and death) are given via IV. But when a seizure cannot be controlled it is called refractory.

Putting this together makes refractory status epilepticus a very dangerous situation with no options. At least, not until someone thought of using diet to control this most dangerous type of seizure. Specifically, the ketogenic diet. The use of the very low carb diet for seizure control is not new and has been shown, in trial after trial after trial, to possess very potent anti-seizure effects. In the case of status epilepticus, after the patient is locked in the seizure state for a certain period of time, feeding usually switches to a feeding tube (enteral), so switching to a ketogenic-based formula is not a problem.

This particular study looked at the treatment of 10 patients who were locked in status epilepticus. Here are the details:

• 7 of the 10 had encephalitis (swelling of the brain due to the severity of the seizures).
• The average time that the patient was in seizure was 21.5 days.
• The average number of antiepileptic medications used before the diet was 7.
• In the 90% that achieved ketosis, seizures ceased in an average of 3 days.
• 3 had minor complications (transient acidosis, hypertriglyceridemia).
• 2 patients ultimately died of causes unrelated to the diet.

While this is a small group of patients, the outcomes achieved for such a safe intervention are more than impressive. They are lifesaving. So I will ask the same question I always ask: WHY is the ketogenic diet the last tool used when the research is so compelling and the safety is so high?

Ketogenic Diet Linked With High Rate of Kidney Stones – (09-18-00)

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Ketogenic Diet Linked With High Rate of Kidney Stones

Remember, this diet is very similar to the high protein/Atkin’s diet. Trust me…anyone on this diet would gladly put weight back on instead of trying to pass those kidney stones!!!

J Urol 2000;164:464-466 The ketogenic diet, which is increasingly being used to treat refractory epilepsy in children, induces several metabolic abnormalities that increase the risk of nephrolithiasis. Dietary modification can be an appropriate prophylactic measure, but refractory stone disease may require discontinuation of the ketogenic diet completely. Lithiasis rate in this population reportedly ranges from 3% to 10%, significantly higher than in the general pediatric population. Dr. Kielb’s group recommends screening urinalysis and renal ultrasonography at 1 and 2 years for children on the ketogenic diet.

Ketogenic Diet May Interfere With Normal Platelet Aggregation – (03-05-01)

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Ketogenic Diet May Interfere With Normal Platelet Aggregation

Never heard of the ketogenic diet? It was originally designed for children with seizures who did not respond to anti-seizure meds. Nowadays the diet is amazingly similar to the high-protein, Atkin’s type diet. This dietary pattern truly opens the body up to so many adverse health effects in the short term, not to mention the long term effects of avoiding whole grains, that I cannot understand why anyone would attempt it. The only type of patient I could support on this type of diet is one with syndrome X, where the body is becoming insulin resistant. In this case, the damage avoided by lowering insulin levels may balance out the bad effects of the diet.

Ann Neurol 2001;49:98-103 Excessive bruising and bleeding occurs in about one third of epileptic children who are on a ketogenic diet, according to Chicago-based investigators. Chart reviews of 10 such patients and prospective screening of 41 others revealed an increased frequency of bruising in 31.4%, and other bleeding symptoms in 5.9%. Dr. Elizabeth Berry-Kravis and associates.

POWERHOUSE DIET ROCKS AGAIN FOR SEIZURES

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So we’ve talked several times about the ketogenic diet and how incredibly effective it is at controlled seizures.  The numbers are very consistent in study after study and, quite frankly, are amazing.

So amazing, in fact, that I remain stumped as to why this isn’t the FIRST path of treatment rather than the absolute last.  The ketogenic diet is almost always used in refractory seizures, which means that the diet is not used until a vast array of medications have been used and have failed.

The ketogenic diet is similar to the Atkins’ diet, in that it is very high in proteins and fat.  The argument against the ketogenic diet is that it is hard to remain compliant with, because apparently having your brain damaged by aberrant firing of neurons is not as important as that slice of bread.

However, recent studies have shown that the modified ketogenic diet, which allows a slightly higher percentage of carbohydrates, is just as effective.  This particular study looks at the compliance argument and pretty much bashes it to shreds.

In a long term follow up study of the ketogenic diet in children over 20 years, 65% of the patients remained on the diet.  I can tell you that, in terms of medication, to get 64% of patients to be compliant with taking a medication for TWENTY years is practically unheard of.

Further,  20% became seizure free and 36% had a 75–99% decrease in seizures. Overall, 56% of the patients had a seizure reduction of more than 75%.  Holy cow! 

So what happened to those who didn’t continue the diet?  Twenty patients who had become seizure free discontinued the diet, but seizures recurred in five (25%). Of 40 patients with a seizure reduction of more than 50% who discontinued the diet, only 25% presented with recurrent seizures.  This means that there was a clear, long lasting benefit to seizure reduction just from being on the diet.

So again, I ask the question about why we use this diet only in refractory seizures.  It is exceedingly powerful.  Patients who follow the diet are very likely to stay on it long term.  AND, it seems to positively change the long term likelihood of having a seizure even in those who discontinue the diet.

INCREDIBLE TREATMENT FOR EPILEPSY REALLY THIS SIMPLE?

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Few neurologists, as a front line discussion, will bring up the ability of anything other than medications to alter seizure susceptibility.  There is rarely discussion of stress management, exercise, targeted nutraceuticals, avoidance of excitotoxins like MSG and Nutrisweet.  There is rarely a discussion of the power of diet; specifically the ketogenic diet.

A decade ago, few would have understood or even heard of the ketogenic diet.  However, due to the similarities to the popular Atkin’s diet, most would find the carbohydrate restrictions of the ketogenic diet familiar.

When it comes to seizure control, the ketogenic diet is amazingly powerful.  Consistently across studies, 1/3 of those on a ketogenic diet have >90% seizure reduction and another 1/3 have >50% reduction.  This is powerful stuff.  Far, far more effective than any anti-seizure medication available.  And yet it is considered as a last line of approach to seizure control (especially in children) instead of the first line.

The strict carb restriction, tendency towards constipation and the concern over certain nutrients deficiences lead many to think that this is a tough program to follow.  This is one of the frequent reasons cited as to why it is so uncommonly used. 

Surprisingly, there is little research into why the ketogenic diet is effective.  We can through billions at developing new drugs, but can’t spend pennies on a study of diet.  We do know that a less strict version such as the modified Atkin’s diet can provide similar seizure control and is more tolerable.  We know that the increase in polyunsaturated fat intake (think olive oil and nuts) plays a large role in the seizure reduction.

This particular article begins to delve even more intently into the cellular mechanisms of the ketogenic diet and determine that the adenosine A1 receptor may be a target by increasing the amount of adenosine, which is a potent molecule already known to be involved in seizure prevention in animals. (http://www.jci.org/articles/view/58391)

The more we know about how the ketogenic diet works, the more we can tease apart the aspects of the diet that are important and keep the aspects the are critical.  This may increase not only the effectiveness, but the palatability of the diet as a lifestyle.

http://www.jci.org/articles/view/57813