The Ketogenic Diet

(from www.epilepsy.com) - written and updated by Dr. Eric Kossoff

The typical ketogenic diet, called the "long-chain triglyceride diet," provides 3 to 4 grams of fat for every 1 gram of carbohydrate and protein. It is a high fat, low carbohydrate diet that has been in use since 1921. It is provided by a neurologist working together with a registered dietitian: the ketogenic diet should NOT be done without medical supervision.

A ketogenic diet "ratio" is the ratio of fat to carbohydrate and protein grams combined. A 4:1 ratio is more strict than a 3:1 ratio, and is typically used for most children. A 3:1 ratio is typically used for infants, adolescents, and children who require higher amounts of protein or carbohydrate for some other reason.

The kinds of foods that provide fat for the ketogenic diet are butter, heavy whipping cream, mayonnaise, and oils (e.g. canola or olive). Because the amount of carbohydrate and protein in the diet have to be restricted, it is very important that the meals be prepared carefully. No other sources of carbohydrates can be eaten. (Even toothpaste might have some sugar in it!). For this reason, the ketogenic diet is supervised by a dietician. The parents and the child become very familiar with what can and cannot be eaten.

Today there are four kinds of dietary treatments: the classic ketogenic diet, the MCT (medium chain triglyceride) diet, the modified Atkins diet (MAD), and the low glycemic index treatment (LGIT). All of these have their role, which one to choose depends on your family and neurologist. The MAD and LGIT are typically started as an outpatient and lead to less ketosis, but in early studies appear to be similarly effective.

http://site.matthewsfriends.org/uploads/pdf/ComparisonTreatments.pdf

Doctors usually recommend the ketogenic diet for children whose seizures have not responded to several different seizure medicines. Doctors seldom recommend the ketogenic diet for adults. That is changing however today. In the limited studies that have been done, the diet seems to work just as well, although it is very restrictive for most adults. We often use the modified Atkins diet for adults.

The ketogenic diet has been shown in case reports and case series to be particularly effective for some epilepsy conditions. These include infantile spasms, Rett syndrome, tuberous sclerosis complex, Dravet syndrome, Doose syndrome, and GLUT-1 deficiency. Using a formula-only ketogenic diet for infants and gastrostomy-tube fed children may lead to better compliance and possibly even improved efficacy. The diet works well for children with focal seizures, but may be less likely to lead to an immediate seizure-free result. In general, the diet can always be considered as long as there are no clear metabolic or mitochondrial reasons not to use it.

What happens first?

Typically the diet is started in the hospital. The child usually begins by fasting (except for water) under close medical supervision for 24 hours. For instance, the child might go into the hospital on Monday, start fasting at 6 p.m. and continue to have only water until 6 a.m. on Tuesday. The diet is started at that point, either by slowly increasing the calories or the ratio. This is the typical Hopkins protocol. There is growing evidence that fasting is probably not necessary for long-term efficacy, although does lead to quicker onset of ketosis. The primary reason for admission in most centers is to monitor for any increase in seizures on the diet, ensure all medications are carbohydrate-free, and educate the families.

Does it work?

Several studies have shown that the ketogenic diet does reduce or prevent seizures in many children whose seizures could not be controlled by medications. Over half of children who go on the diet have at least a 50% reduction in the number of their seizures. Some children, usually 10-15%, even become seizure-free.

Children who are on the ketogenic diet continue to take seizure medicines. Some are able to take smaller doses or fewer medicines than before they started the diet, however. The time when medications can be lowered depends on the child and the comfort level of the neurologist. Evidence suggests it can be done as early as the diet initiation period safely in many circumstances.

If the person goes off the diet for even one meal, it may possibly lose its good effect. So it is very important to stick with the diet as prescribed. It can be especially hard to follow the diet 100% if there are other children at home who are on a normal diet. Small children who have free access to the refrigerator are tempted by "forbidden" foods. Parents need to work as closely as possible with a dietician.

Are there any side effects?

A person starting the ketogenic diet may feel sluggish for a few days after the diet is started. This can worsen if a child is sick at the same time as the diet is started. Make sure to encourage carbohydrate-free fluids during illnesses.

Other side effects that might occur if the person stays on the diet for a long time are:

Kidney stones
High cholesterol levels in the blood
Constipation
Slowed growth or weight gain
Bone fractures

Because the diet does not provide all the vitamins and minerals found in a balanced diet, the dietician will recommend vitamin and mineral supplements. The most important of these are calcium and vitamin D (to prevent thinning of the bones), iron, and folic acid.

There are no anticonvulsants that should be stopped while on the diet. Medication levels do not change while on the diet according to recent studies.

How is the patient monitored over time?

Early on, the doctor will usually see the child every 1-3 months. Blood and urine tests are performed to make sure there are no medical problems. The height and weight are measured to see if growth has slowed down. As the child gains weight, the diet may need to be adjusted by the dietician.

Can the diet ever be stopped?

If seizures have been well controlled for some time, usually 2 years, the doctor might suggest going off the diet. Usually, the patient is gradually taken off the diet over several months or even longer. Just as happens if seizure medicines are stopped suddenly, seizures may become much worse if the ketogenic diet is stopped all at once. Children usually continue to take seizure medicines after they go off the diet. In many situations, the diet has led to significant, but not total, seizure control. Families may choose to remain on the ketogenic diet for many years in these situations.

http://www.epilepsy.com/ketonews

http://www.charliefoundation.org/content/ketogenic-diet

Typical foods / recipes

Butter, mayonnaise, heavy whipping cream, olive oil, canola oil, eggs, bacon, chicken, ground beef, green vegetables, strawberries, blueberries, almonds, cheese, avocado, tuna fish, lettuce, artificial sweeteners, mushrooms, hot dogs, sausages, macadamia nuts.

http://site.matthewsfriends.org/index.php?page=getting-started-2

Recipe Links

http://www.charliefoundation.org/recipes

http://www.myketocal.com/recipes_kd.html

http://site.matthewsfriends.org/index.php?page=classical

http://www.atkins.com/RecipeLanding.aspx

Formulas

Nutricia KetoCal
http://www.shsna.com/pages/ketocal.htm

Solace KetoVolve
http://ketovolve.com

Modified Atkins Diet

The modified Atkins diet was created in 2002 as an alternative ketogenic diet to ease the restrictiveness of the ketogenic diet. Today it is widely studied, especially in adults and adolescents. It is still very high fat, with carbohydrates (any) reduced to 10 grams/day for children and 20 grams/day for adults. Fluids, protein, and calories are not restricted and patients are started in clinic rather than in the hospital.

Modified Atkins Diet Information

http://www.epilepsy.com/epilepsy/treatment_atkins_diet

http://www.aan.com/news/?event=read&article_id=2621

http://www.atkins.com

http://modifiedmom.wordpress.com/category/recipes

http://www.atkinsforseizures.com/low-carb-breakfast-recipes.html

Low Glycemic Index Treatment

The Low glycemic index treatment is a dietary treatment for epilepsy started in Boston at at the Massachusetts General Hospital. It is still predominantly high fat and low carbohydrate, but the primary difference is that carbohydrates are specified to only those with glycemic indicies less than 55. It may be advantageous to those patients considering a ketogenic diet, but for whom the high fat cannot be tolerated. In preliminary studies it appears to be effective.

Low Glycemic Index Treatment Information

http://site.matthewsfriends.org/index.php?page=heidi-pfeifer

http://www.epilepsy.com/epilepsy/keto_news_may07

http://www.glycemicindex.com

http://www.charliefoundation.org/content/low-glycemic-index-treatment

http://www2.massgeneral.org/childhoodepilepsy/families/rose.htm