Blog #139: WHAT ABOUT THOSE KETOGENIC DIETS?

 

 

Since the 1920s it’s been observed that a very high fat with very low protein and low carbohydrate diets benefited children whose epilepsy initially failed to respond to anticonvulsant medications (ACM). Adult epilepsy patients have found that following such a ketogenic diet can help their seizures, too. However, these adults had to deal with very, very strict diets for the ketogenic diet to be effective. They would say, “What, no bread? No sugar?”  But, when properly following the diet, they often said, “I haven’t had a seizure since I started the diet. I used to be debilitated by them.”

 

In the 1990s interest in the ketogenic diet resurfaced after the promising newer ACMs did not prevent enough seizures. The exact mechanisms for this diet’s effectiveness are not known.

 

Ketones are chemicals created in the liver from fat and fatty acids and act as fuel for the brain that can pass through the blood-brain barrier (a microscopic-diffusion barrier, which impedes influx of most compounds from the blood into the brain. A 2015 analysis of 12 relevant studies found about half of adult patients who follow the classic ketogenic diet (where they eat four grams of fat for every gram of carbohydrates and/or protein) experience at least a 50 percent reduction in seizures. ¹ Even if they were a little less strict in following the diet, the restricted diet was still beneficial in some reduction in their seizures.

 

Ketones are an alternative form of energy. Normally, the body’s primary fuel source is glucose coming from carbohydrates (fruit, vegetables and grains and sodas and sweets). The typical American adult derives half of their daily calories from carbohydrates. Fasting causes the liver to convert stored fat into ketones which supply energy to our cells. A state of KETOSIS in our body is created when the diet consists of AT LEAST 90% of calories derived from fat (generous ingestion of butter, mayonnaise, and heavy cream) and only 4% from carbohydrates and 6% from protein. An iteration of the modified Atkins diet also limits carbs but involves less fat with no restrictions of proteins. This diet can be more palatable and easier for adults to continue. Typically, about half of adult patients give up the diet within 6 months because of side effects that can include constipation and kidney stones. Many stopped the ketogenic diet if the onerous diet didn’t reduce their seizures as hoped.

 

One patient whose seizures were reduced following the modified Atkins diet said her favorite meal is hot chicken wings minus the barbecue sauce (too much carbohydrate sugar).

 

I invite you to learn more about ketogenic diets and epilepsy by consulting with your neurologist and especially with a nutritionist.

 

1.     Fang Ye, Xiao-Jia Li, Wan-Lin Jiang, et.al. Efficacy of and Patient Compliance with a Ketogenic Diet in Adults with Intractable Epilepsy: A Meta-Analysis Journal of Clinical Neurology 2015; 11(1): 26-31.

 

 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in a recent Publishers Weekly, New York Times Book Review and the Los Angeles Times Calendar section. DINGS teaches epilepsy and is now available in eBook, audiobook, and soft and hard cover editions.

 

 

Blog #98: Highlights from the Epilepsy Symposium: University of Southern California. September 15, 2018

Ten percent of the American population will have at least one seizure in their lifetime and one in 26 Americans will develop epilepsy; epilepsy is diagnosed when more than one seizure occurs. Americans with epilepsy number 3.4 million, 65 million people world-wide have epilepsy. There are 48 newly diagnosed cases/100,000 population each year.

• The Communicable Disease Center (CDC) found the death rate for all Americans in 2017 was 844.0 deaths per 100,000 population or 0.84 percent.¹  This statistic is not that dissimilar to the 500 to 1000 deaths per 100,000 people with epilepsy that die each year. However, life-expectancy for people with epilepsy averages 19 years fewer than the general population. In 2014, SUDEP (sudden unexplained death in epilepsy) was listed as cause of death for only 2650 people. Death certificates don’t always list accurate causes of death, but SUDEP is thought to occur in one out of 75-150 Americans, or 30,000, of all ages with epilepsy annually (SUDEP is discussed in my blogs #13, #57 and #68), especially in those whose epilepsy is poorly controlled. Fifty percent of the epilepsy population have more than one seizure/year, i.e., their epilepsy is active and not in remission.
• One-third of the epilepsy population is NOT under the care of a neurologist, the physician-specialty that is more expert in caring for epilepsy patients.
• The greatest number of newly diagnosed patients with epilepsy currently is over 60 years of age, not the pediatric population (see LanceFogan.com blog #15).
• Pregnant women, and those who are considering getting pregnant, should take 400 micrograms of Folic Acid vitamin daily. Folic Acid can lower the incidence of nervous system and other malformations in the fetus. Verbal abilities in children of mothers on antiepileptic drugs (AEDs) who started daily Folic Acid at least four weeks before conception exceed verbal abilities the children of mothers with epilepsy not taking Folic Acid.²

GENETICS IN EPILEPSY:

• Genes that connect with actions of certain anticonvulsants (AED) are now being identified. If these genes are present in the patient a more effective AED can be chosen. Some of these effective medications are not even AEDs but medicines used for other diseases. To date, these genetic laboratories are rare. When two AEDs have been unsuccessful in controlling one’s epilepsy, genetic testing should be done. Genetic testing is expensive, but its use is growing and should benefit many uncontrolled patients. As of 2018, seventy percent of people with epilepsy have no identifiable cause. Genetic screening will probably result in many more identifiable causes.

SURGICAL EPILEPSY TREATMENT:

• Epilepsy is now considered a surgical disease. Epilepsy centers evaluate patients with sophisticated equipment. If an abnormal brain area can be located as the origin of seizures, 60-70 percent are cured of their epilepsy or markedly improved. As scary as brain surgery sounds side effects, as significant thinking, memory, motor or sensory problems, are uncommon. Nonetheless, surgical treatment is underutilized, probably because of fear and expense.

OTHER DEVICES AND TREATMENTS IN EPILEPSY:

• Vagus Nerve Stimulation: in use since 1997. Its effectiveness in decreasing seizures increases over time with its use independent of AEDs. Side effects include cough, hoarseness and shortness of breath because the vagus nerve stimulates these functions of the vocal cords and the respiratory functions. Usually an out-patient procedure.

·         Responsive Neurostimulator: a portion of the external skull surface bone is scooped out for a battery-powered computer (batteries need replacement every 3-5 years) to fit in this bone-bed, then covered with scalp tissue. Thin stimulators are placed into the area of the brain where the seizure originates via two small drill-holes through the skull. Whenever the apparatus detects the beginnings of a seizure the stimulator probes “fire.” This “short-circuits” and halts the seizure. Researchers believe cognition increases over time, probably because fewer seizures occur that interfere with thought. Over one-half of the patients decrease their seizure frequency by 60 percent.

Ketogenic Diet:

            Mostly reserved for intractable epilepsy. Not ideal for good surgical candidates. Effective across the age spectrum. In use since Mayo Clinic doctors in 1924 found this diet efficacious. It consists of 90% of calories from fat and only 10% from carbohydrates (sugars) and protein. The diet is safe and can be effective in children and adults. Ten percent of patients become seizure-free & 40 percent achieve more than 50 percent decrease in seizure frequency at one year. Forty percent remained on the diet at one year due to their successful control. Of 53 percent of the people who discontinued the diet, half was due to poor tolerance and half due to poor seizure control. Response to the diet may take a month to occur.

• Excellent response in most genetic and primary epilepsies (Juvenile Myoclonic, brain malformations and trauma, Dravet, West and Lennox-Gastaut syndromes, infantile spasms, tuberous sclerosis, and others). The ketogenic diet should not be used when certain other conditions exist, usually metabolic diseases.

1)   https://www.cdc.gov/nchs/fastats/deaths.htm 

2)     Husebye ESN, Gilhus NE, Riedel B, et.al. Verbal Abilities in Children of Mothers with Epilepsy. Neurology 2018: 91:e811-e821.

3)     A. Bergqvist in Epilepsy and the Ketogenic Diet; edited  by Stafstrom & Rho, 2004

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.

Blog #91: Non-Drug Treatments for Epilepsy

            Many patients whose epilepsy responds poorly to antiseizure medications (20-30% of the three million American epilepsy population) may benefit from non-drug treatments. A study presented at the 71^st American Epilepsy Society Annual Meeting showed evidence that Vagus Nerve Stimulation (VNS), the ketogenic diet and a surgical procedure―corpus callosotomy—may reduce generalized and focal seizures. Among patients who failed three anticonvulsive medications between ages 8 months to 20 years, with a mean age of 10 years, underwent one of these treatments. Most of the patients’ parents were pleased with the results.¹ Sixty-three percent of patients who went on the ketogenic diet reported 50% or greater  reduction of their  generalized seizures. Fifty-four percent of patients who underwent corpus callosotomy and 52% of patients who received vagus nerve stimulation reported 50% or greater reduction in their generalized seizures.

            A very important benefit in withdrawing multiple anticonvulsive medications is that drug side effects are minimized: drowsiness, poor concentration, weight control problems, blood testing, teratogenic risks for women among other effects.

• Vagus Nerve Stimulation is sometimes referred to as a "pacemaker for the brain." A stimulator device is implanted under the skin in the chest. A wire from the device is wound around the vagus nerve in the neck. A person with a VNS device is usually not aware it's operating.

• The ketogenic diet is a special high-fat, low-carbohydrate diet that helps to control seizures in some people with epilepsy. It is prescribed by a physician and carefully monitored by a dietitian. It is extremely strict, with calorie, fluid, and protein measurements. Ketones are formed when the body uses fat for its source of energy. The body usually uses carbohydrates (such as sugar, bread, pasta) for its fuel, but because the ketogenic diet is very low in carbohydrates, fats become the primary fuel instead. Higher ketone levels often lead to improved seizure control but the precise reason is not understood.

• Corpus callosotomy The corpus callosum is the most important connection between the two halves of the brain. Callosal surgical sectioning is quite effective in reducing seizure frequency in patients who have generalized epilepsy with drop attacks. It is generally reserved for this selected population. It is an epilepsy surgery procedure that is considered palliative only. It mediates communication between the two hemispheres of the brain. Seizures may spread rapidly from one hemisphere to the other by way of the corpus callosum; thus seizure spread is reduced and control is increased.  Serious complications are exceedingly rare.

            Dr. Dave Clarke, Clinical Director of Epilepsy at Texas Children’s Hospital at the Baylor College of Medicine in Houston led a study with colleagues at the Dell Children’s Medical Center in Austin between January 2010 and November 2015. They compared seizure control, cognitive and behavioral factors, quality of life and parental satisfaction.

            Parents reported a 50%, or greater, reduction in generalized seizures in 63% of patients who went on the ketogenic diet, 54% of patients improved who underwent corpus callosotomy and 52% of patients improved who received VNS.

            “Many doctors keep trying medications without considering alternatives,” said Dr. Clarke. He suggests doctors introduce treatment alternatives after two anticonvulsive medications fail to control seizures.

1.      www.neurologyreviews.com: Jack Remaly in Neurology Reviews. January 2018, page 1, 45-46.

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.