The ketogenic diet, which is very high in fats and low in carbohydrates, was first developed almost 80 years ago. It makes the body burn fat for energy instead of glucose. When carefully monitored by a medical team familiar with its use, the diet helps two out of three children who are on it, the diet may prevent seizures completely in one out of three. It is a strict diet, and takes a strong commitment from the whole family. The ketogenic diet is not a do-it-yourself diet. It is a serious form of treatment that, like other therapies for epilepsy, has some side effects that have to be watched for. More research is being done to learn about the underlying reasons for the diet’s positive effect.
Because the diet is very high in fat and very low in proteins and carbohydrates, it produces a change in the child’s body chemistry called “ketosis”. The state of ketosis must be maintained and any straying in the diet can cause a change in that state of ketosis and, ultimately, seizure activity in the child.
The Ketogenic Diet is prescribed for children for a limited amount of time. After remaining on the diet for a while, doctors and the dietitian will want to slowly taper off the diet and reintroduce regular foods. If seizures return, the diet may be re-instituted. Studies are currently underway being conducted now to determine if the ketogenic diet may be an effective form of treatment for adults as well. Early results show that it may work, but the long-term effects of such a strict diet are not yet known at this point.
On this diet, the amount of food is carefully weighed so that your child will eat all the calories she needs for good health, but not so many that she gains weight. The fat content of the food doesn’t affect weight if you strictly limit total calories.
A child must finish all the food because the meal is put together in amounts that will give him the right balance between fat, protein, and carbohydrates. If it’s not all eaten, the balance is lost, and the child may have a seizure. Some parents report that mealtimes on the diet can wrap up in twenty minutes, while others say they have to sit with their children for two hours before all the food is finished.Since this is important, parents often try tricks like playing a video during meals or playing games to distract the child while they’re encouraging the child to eat.
Parents who’ve been successful advise others to use the diet creatively, and try to offer something new and special for each meal to keep the child’s interest. Older children, who know that the diet is helping to keep their seizures away, may be more cooperative.
Some things to remember:
- All medicines and pharmaceuticals, from toothpaste to cough syrup to vitamins to prescription medicine, must, whenever possible, be free of sugar and other carbohydrates. Remind your doctor to prescribe all needed medications in sugar-free and carbohydrate-free forms. Read labels carefully and check with your pharmacist.
- When children are switched from a normal diet to a 90 percent fat diet, both cholesterol and triglyceride levels can go up. However, the ketogenic diet is not a lifetime diet. Children stay on it about two years. When weaned off the diet, most children return to their pre-ketogenic diet levels.
- Your dietitian will help you plan meals that can go to school with your child. Tuna, egg, or chicken salads are easy to carry in small plastic containers. Warm or chilled food can be carried in a small cooler or insulated bag, or wrapped in foil.
There are many celebrations at school that involve food. It’s very important for all the teachers and aides to know that your child cannot have the same treats that the other children get. You may want to ask school personnel to let you know in advance when treats are planned so that you can send an appropriate ketogenic diet treat for your child.
It’s a good idea to have a meeting with your child’s teachers and everyone your child comes in contact with at the beginning of every school year. Make them understand that even half a cookie or a bite of cupcake can lead to seizures, hospital, and the loss of seizure control. Basically, your child must only eat food that is brought from home and the school must help to assure this.
One family offers the following suggestion for Halloween, which is all about candy and sugary treats. They let their child go trick-or-treating like the other neighborhood children, but when the child gets home, they buy back the candy and the child then uses the money to buy a special toy.
Frequently Asked Questions to ask before starting the Ketogenic Diet:
- Will my child gain weight from eating so much fat?
- How long should I sit with my toddler before I give up trying to get him to finish all his food?
- Will taking prescription or other medicines affect the diet?
- Does the diet cause a problem with high cholesterol?
- What can my child eat at school?
- How does my child explain the diet to his friends?
- What about special holidays like birthdays and Thanksgiving?