What is the Ketogenic Diet?

Frequently Asked Questions

Why does it work?

The reason the diet can prevent seizures is unknown, but it is being studied. It is also not known why it works for some children and not others.

How effective is it?

It is recommended that the diet be followed for at least three months to determine if it is working. About one-third of children have a >90% reduction in seizures, another third have 50-90% reduction, with the rest having no response to the diet. Other potential benefits of the diet include a reduction in the number of antiepileptic drugs, increased alertness, and improved behavior even if seizure control is not improved.

If the diet is working, your child should stay on the diet for at least two years. After that, you and your doctor will decide the benefit of staying on the diet beyond two years.

How is the diet started?

The ketogenic diet requires hospitalization for 4 – 5 days with admission on a Monday. The diet may require a 24 hour fast for the older child and is decided on an individual basis by the dietitian. Infants, young children and those on tube feedings are not fasted. During the fast only water and diet beverages will be allowed. Medications are given at their usual time. Blood glucose needs to be monitored during the fast and initiation of the diet. Urine ketones are checked to ensure that ketosis is achieved. The dietitian will provide extensive education during the admission.

Any medication or supplements must be provided as sugar-free whenever possible. If a medication or supplement is not available sugar-free then the carbohydrate content must be calculated into the diet. The preferred form of medications is tablets, capsules and powders/sprinkles.

Liquids, elixirs and chewable medications are high in sugar and need to be avoided.

What happens after discharge?

The family is instructed to check for ketones twice a day, once in the am before the first meal or tube feeding and once in the late afternoon or evening. You will need to record ketones along with the occurrence of seizures on a seizure calendar. Weekly weights should be obtained and recorded.

The family will contact the inpatient dietitian during the first three months on the diet for issues and concerns. At three months the family has usually met with the neurologist to decide if they will continue with the diet. At that point follow-up of the diet is transferred to the outpatient dietitian. Follow-up visits occur at three months, six months, one year and then annually.

Based on their comfort and interest parents can be given access to the ketodietcalculator program to create meals and snacks with the dietitian’s supervisor.

Weaning of medications is typically done after six months of being on the diet.

What are the side effects?

The diet has a variety of possible side effects that may or may not affect your child. Common side effects include nausea, vomiting, constipation and loss of appetite. Less common include poor growth, kidney stones and hyperlipidemia or elevated levels of fat in the blood. The medical team will monitor and help prevent or treat these side effects.

Is this diet nutritionally complete?

The ketogenic diet is deficient in the B vitamins, vitamin C, vitamin D, calcium, magnesium, and iron. Children on the diet receive supplements of these vitamins and minerals. The dietitian will determine the supplementation your child needs.

What will I have to buy?

A digital gram scale will have to be purchased to measure food and formula. Ketostrips for checking the urine will also have to be purchased. Typically, insurance does not cover the scale or ketostrips.

The use of special formulas will be determined by the dietitian. Insurance coverage of special products varies. The dietitian will help to determine coverage.

What are some reliable resources for more information?

Websites

• epilepsy.com
• charliefoundation.org
• myketocal.com
• nutricia-na.com/
• matthewsfriends.org

Recommended Books

• Good Morning, Beautiful: Winning the Battle Over Seizures by Paulette George. An insight into a family’s experience with epilepsy. The emotional and spiritual strength of this mother will overwhelm you.
• Parent’s Guide to the Ketogenic Diet by The Charlie Foundation for Ketogenic Therapies. Order here.
• The Ketogenic Diet and Modified Atkins Diets: Treatments For Epilepsy and Other Disorders by Eric Kossoff MD, Zahava Turner RD LDN, Sarah Doerrer, CPNP, MacKenzie Cervenka MD and Bobbie Henry RD LDN. Sixth edition, 2016.

What about the Modified Atkins Diet?

The Modified Atkins Diet (MAD) is a less restrictive alternative to the ketogenic diet. It uses the principles of the Atkins diet with some modifications. The Atkins diet was originally designed for weight reduction in adults.

The MAD is a high fat, low carbohydrate, moderate protein diet that is generally used for older children and teens. Meals on the MAD diet can be eaten at restaurants making the diet more accessible to this age group. It is also used for individuals who find the ketogenic too difficult to follow. The MAD diet may also be used as a step down from the ketogenic diet.

The ratio of the diet is 1:1 rather than the typical 4:1 ratio of the ketogenic diet. It does not require hospitalization or a digital scale. Household measurements are required initially while learning the diet and meals. Education is provided by the outpatient dietitian.

How do I decide?

Your neurologist and the dietitian will help you decide which diet is best for your child. Due to the possible side effects and nutritional deficiencies of both the ketogenic and the Modified Atkins diet close medical supervision is required.