Children who discontinue the diet after achieving seizure freedom have about a 20% risk of seizures returning. The length of time until recurrence is highly variable, but averages two years. This risk of recurrence compares with 10% for resective surgery (where part of the brain is removed) and 30–50% for anticonvulsant therapy. Of those who have a recurrence, just over half can regain freedom from seizures either with anticonvulsants or by returning to the ketogenic diet. Recurrence is more likely if, despite seizure freedom, an electroencephalogram shows epileptiform spikes, which indicate epileptic activity in the brain but are below the level that will cause a seizure. Recurrence is also likely if an MRI scan shows focal abnormalities (for example, as in children with tuberous sclerosis). Such children may remain on the diet longer than average, and children with tuberous sclerosis who achieve seizure freedom could remain on the ketogenic diet indefinitely.
Early studies reported high success rates; in one study in 1925, 60% of patients became seizure-free, and another 35% of patients had a 50% reduction in seizure frequency. These studies generally examined a cohort of patients recently treated by the physician (a retrospective study) and selected patients who had successfully maintained the dietary restrictions. However, these studies are difficult to compare to modern trials. One reason is that these older trials suffered from selection bias, as they excluded patients who were unable to start or maintain the diet and thereby selected from patients who would generate better results. In an attempt to control for this bias, modern study design prefers a prospective cohort (the patients in the study are chosen before therapy begins) in which the results are presented for all patients regardless of whether they started or completed the treatment (known as intent-to-treat analysis).
Recently, many of my patients have been asking about a ketogenic diet. Is a ketogenic diet safe? Would you recommend it? Despite the recent hype, a ketogenic diet is not something new. In medicine, we have been using it for almost 100 years to treat drug-resistant epilepsy, especially in children. In the 1970s, Dr. Atkins popularized his very-low-carbohydrate diet for weight loss that began with a very strict two-week ketogenic phase. Over the years, other fad diets incorporated a similar approach for weight loss.
Missing Nutrients. One of the biggest concerns for dietitians is the keto diet’s lack of key foods. Many question the eating plan’s impact on the development of certain chronic diseases. Without milk, for example, getting enough calcium and vitamin D for sturdy bones becomes a challenge. Take away whole grains, fruit, beans, and potatoes, and it’s nearly impossible to consume enough potassium for healthy blood pressure or enough fiber to stay regular. And unless you’re eating lots of low-carb, leafy green vegetables, you miss out on vitamins A, C, K, and folate, too.
A: The most common ways to track your carbs is through MyFitnessPal and their mobile app. You cannot track net carbs on the app, although you can track your total carb intake and your total fiber intake. To get your net carbs, just subtract your total fiber intake from your total carb intake. I have written an article on How to Track Carbs on MyFitnessPal.
So rather than giving one-size-fits-all dietary advice or weaponizing the word “balanced” it might be better if the medical community suggested that there are Individual differences that need to be considered. This might also help those lay folk who have had success with one dietary lifestyle or another also realize that what’s valid for them may not be good advice for others.
This may require a lifestyle change for many families, so we advise families who are interested in the diet to learn more by reading some of our excellent printed resources and to talk to each person who regularly cares for the child to make sure there is agreement to try the diet. We usually encourage an appointment with one of our epileptologists to confirm that the diet is right for your child, and then an appointment with our ketogenic diet team to go over more of the details.
^ Ketogenic "eggnog" is used during induction and is a drink with the required ketogenic ratio. For example, a 4:1 ratio eggnog would contain 60 g of 36% heavy whipping cream, 25 g pasteurised raw egg, saccharin and vanilla flavour. This contains 245 kcal (1,025 kJ), 4 g protein, 2 g carbohydrate and 24 g fat (24:6 = 4:1). The eggnog may also be cooked to make a custard, or frozen to make ice cream.
Even in endurance sports that don’t require sprinting, ketogenic-style diets are disadvantageous according to a ketogenic diet and exercise article published in Sports Medicine: “a high-fat, low-carbohydrate ketogenic diet may impair exercise performance via reducing the capacity to utilize carbohydrates, which forms a key fuel source for skeletal muscle during intense endurance-type exercise.” The article concluded, “At present there are no data available to suggest that ingestion of ketone bodies during exercise improves athletes’ performance under conditions where evidence-based nutritional strategies are applied appropriately.”
The ketogenic diet is a medical nutrition therapy that involves participants from various disciplines. Team members include a registered paediatric dietitian who coordinates the diet programme; a paediatric neurologist who is experienced in offering the ketogenic diet; and a registered nurse who is familiar with childhood epilepsy. Additional help may come from a medical social worker who works with the family and a pharmacist who can advise on the carbohydrate content of medicines. Lastly, the parents and other caregivers must be educated in many aspects of the diet for it to be safely implemented.
The past 4 years I was suffering from mild to severe pain all over my body and unrelenting fatigue, sleep disturbances, brain fog, etc. Diagnosed with Sjogren’s Syndrome and Fibromyalgia. Medication included Vicodin, Morphine and a muscle relaxer. I would not take Plaquenall (spelling?), Lyrica or other “biologics”. I was taking a bunch of supplements but nothing was improving.
After initiation, the child regularly visits the hospital outpatient clinic where they are seen by the dietitian and neurologist, and various tests and examinations are performed. These are held every three months for the first year and then every six months thereafter. Infants under one year old are seen more frequently, with the initial visit held after just two to four weeks. A period of minor adjustments is necessary to ensure consistent ketosis is maintained and to better adapt the meal plans to the patient. This fine-tuning is typically done over the telephone with the hospital dietitian and includes changing the number of calories, altering the ketogenic ratio, or adding some MCT or coconut oils to a classic diet. Urinary ketone levels are checked daily to detect whether ketosis has been achieved and to confirm that the patient is following the diet, though the level of ketones does not correlate with an anticonvulsant effect. This is performed using ketone test strips containing nitroprusside, which change colour from buff-pink to maroon in the presence of acetoacetate (one of the three ketone bodies).
I tried the keto diet a couple years ago and about 6 weeks in of following it closely I started having significant episodes of lightheadedness and anxiety like symptoms. The coach I was working with said it was keto flu so I continued on the diet for a couple more weeks but it was making life difficult so I stopped. Now every time I try to go low carb the symptoms come back. Sometimes I wonder if it’s just anxiety response or all in my head. I would love to eat low carb but haven’t ever been able to figure out why this happens. I read somewhere that keto can be harder for women’s bodies and affect their adrenal glands. Would this increase anxiety symptoms.
A short-lived increase in seizure frequency may occur during illness or if ketone levels fluctuate. The diet may be modified if seizure frequency remains high, or the child is losing weight. Loss of seizure-control may come from unexpected sources. Even "sugar-free" food can contain carbohydrates such as maltodextrin, sorbitol, starch, and fructose. The sorbitol content of suntan lotion and other skincare products may be high enough for some to be absorbed through the skin and thus negate ketosis.
When in the hospital, glucose levels are checked several times daily and the patient is monitored for signs of symptomatic ketosis (which can be treated with a small quantity of orange juice). Lack of energy and lethargy are common, but disappear within two weeks. The parents attend classes over the first three full days, which cover nutrition, managing the diet, preparing meals, avoiding sugar, and handling illness. The level of parental education and commitment required is higher than with medication.
Modern-day ketogenic diet promoters such as Pete Evans advocate low-carbohydrate diets for babies and children. However, the Inuit practiced exclusive breastfeeding until their children reached 2 years of age, at which time meat was introduced in their diets. In other words, at the time of most rapid brain growth, the low-carb eating Inuit provided their children with the only carbohydrate-rich food available to them – human milk.
Although many hypotheses have been put forward to explain how the ketogenic diet works, it remains a mystery. Disproven hypotheses include systemic acidosis (high levels of acid in the blood), electrolyte changes and hypoglycaemia (low blood glucose). Although many biochemical changes are known to occur in the brain of a patient on the ketogenic diet, it is not known which of these has an anticonvulsant effect. The lack of understanding in this area is similar to the situation with many anticonvulsant drugs.
Anticonvulsants suppress epileptic seizures, but they neither cure nor prevent the development of seizure susceptibility. The development of epilepsy (epileptogenesis) is a process that is poorly understood. A few anticonvulsants (valproate, levetiracetam and benzodiazepines) have shown antiepileptogenic properties in animal models of epileptogenesis. However, no anticonvulsant has ever achieved this in a clinical trial in humans. The ketogenic diet has been found to have antiepileptogenic properties in rats.
In fact, patients with gastroesophageal reflux disease (GERD) have been shown to improve after eating very low carbohydrate diets.31, 32 Another study found increased carb-intake worsened GERD, while a high-fat, low-carbohydrate diet reduced symptoms.33 And two studies have linked esophageal diseases, including Barrett’s esophagus (BE)34 and GERD,35 to sugar and carbohydrate intake.
If you’re looking to get a jump start on your health and fitness goals this year, you may be thinking about trying the ketogenic diet. Maybe you’ve heard the phrase before — it’s a huge diet buzzword — but aren’t sure what it means. Here’s a primer: The ketogenic diet is an eating plan that drives your body into ketosis, a state where the body uses fat as a primary fuel source (instead of carbohydrates), says Stacey Mattinson, RDN, who is based in Austin, Texas.