Our Ketogenic Diet Therapy Program, in conjunction with our Epilepsy Program–a key component of Barrow Neurological Institute at Phoenix Children's–offers diet therapy as a treatment option for children with epilepsy. Under medical supervision by an epileptologist and a trained ketogenic dietitian, the ketogenic diet is used to reduce the number and intensity of seizures.
Families from across the country visit our world-class Epilepsy Program, which includes ketogenic diet therapy as a treatment option for epilepsy.
The ketogenic diet is used to reduce the number and intensity of seizures. Although complete seizure control is not always possible, one-third of the children placed on the diet achieve complete seizure control and the control is maintained even after the diet is discontinued.
Of the remaining patients with seizures, > 50% have decreased seizure frequency or require less medication to achieve the same amount of seizure control.
In addition to improved seizure control with the ketogenic diet, patients and families report increased alertness or environmental attentiveness as a result of the diet. It is not known how much of the improvement is related to the diet or from the seizure medications being weaned.
Frequently Asked Questions
The ketogenic diet is calculated at a specific calorie level by your child’s dietitian. The dietitian will keep track of your child’s growth to determine if a change is needed to ensure they grow appropriately. Even though the diet is high in fat, your child will not gain too much weight. Since the diet alone does not contain enough vitamins or minerals, your child will need special supplements. Without supplements, your child is at risk for a nutritional deficiency.
If your child eats or drinks something not part of the ketogenic diet, such as juice, cake, or cookies, they are at a high risk for increased seizures. Even having extra ketogenic foods (such as meats and vegetables) may lead to increased seizures. This reaction is similar to suddenly stopping your child’s seizure medicines all at once. In serious cases, uncontrolled seizures may require you to call 9-1-1 or take your child to the hospital.
In some children, the cholesterol levels may increase a little during the first six months because the diet is high in fat. However, as the body uses the fat for energy, these levels usually decrease and go back to normal. If your child does develop high cholesterol, the diet can be adjusted. Your child’s cholesterol blood level is drawn before starting and will be re-checked regularly while on the diet.
Though portion sizes are small, your child will eat foods high in fat and calories. These types of foods will help keep them feel full for a long time since they take longer to leave the stomach. Since ketones are the product of fat breakdown, they will also make your child feel less hungry. Some children even have a hard time finishing all the meals because they feel full. If this happens, your child’s dietitian will work closely with you and make necessary changes to make sure they eat the right amount of calories.
Children with feeding tubes can be on ketogenic diet therapy. There are special ketogenic formulas for feeding tubes. Your child’s dietitian will figure out what type and amount of special formula they will need in order to follow the ketogenic diet.
Your child will need specific blood tests before starting the ketogenic diet. These blood tests will help determine if the diet is safe for your child. Your child will be tested for metabolic disorders to see if they have a carnitine deficiency or fatty acid disorder. If they do have a metabolic disorder, then it is not safe for your child to follow a ketogenic diet.
Children are usually very flexible and can adapt to changes in their diets without difficulty. The ketogenic diet can fit into your family’s life, but it does require planning. Your child’s dietitian can help you plan meals that match your child’s food preferences.
If you are going on vacation, it may be a good idea to pack food before you leave and take a scale with you so you are prepared when you are away from home. On short trips, take one or more prepared meals in a cooler. On longer trips, try to stay in a hotel with a kitchenette so you can easily prepare your child’s meals.
No, only your child’s neurologist and a dietitian specifically trained to manage ketogenic diets should give you medical advice regarding your child’s diet. If you use the internet as a source of information, be aware of the quality of information you may read. Not everything you read on the internet is true. A good online resource for general information about the ketogenic diet is The Charlie Foundation.
There are meals you can prepare for social functions. For example, for your child’s birthday, you can put candles in Jell-O® or make a “keto” cake that fits in your child’s ketogenic diet. For Halloween, there are places to donate or sell Halloween candy. You can encourage your child to save up money for a new book or toy or take your child on a special outing. Offering non-food rewards is a great option since your child cannot have candy.
Yes, children can adapt to the ketogenic diet. Your dietitian is able to provide recipes of foods that match your child’s preferences, which makes the transition easier. It does take effort, but our families say it is worth it! Talk to your child about why you are making these changes. Knowing why the changes happened may make it easier for them to stick with the diet.
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