What the Diet Does
Normally, our bodies run on energy from glucose, which we get from food. We can't store large amounts of glucose, however. We only have about a 24-hour supply. When a child has no food for 24 hours— which is the way the ketogenic diet may begin (usually in a hospital)— he or she uses up all the stored glucose. With no more glucose to provide energy, the child's body begins to burn stored fat.
The ketogenic diet keeps this process going. It forces the child's body to burn fat around the clock by keeping carbohydrates (sugars) low and making fat products the primary food that the child is getting. In fact, the diet gets most (80 percent) of its calories from fat. The rest come from carbohydrates (sugars) and protein (meat). Each meal has about four times as much fat as protein or carbohydrate. The amounts of food and liquid at each meal have to be carefully worked out and weighed for each person (typically the diet is made up by a nutritionist or dietician with special training).
Doctors don't know precisely why a diet that mimics starvation by burning fat for energy should prevent seizures, but this is being studied. Nor do they know why the same diet works for some children and not for others.
Trying to put a child on the diet without medical guidance puts a child at risk of serious consequences. Every step of the ketogenic diet process must be managed by an experienced treatment team, usually based at a specialized medical center.
Chances of Success
Often, a period of fine-tuning is needed before it's clear whether or not a child is going to respond to the ketogenic diet. Doctors often ask parents to try the diet for at least one month, and even as long as two or three, if it's not working at first. By the end of this time the parent should have a good idea if the ketogenic diet is working, and can make a decision if they wish to continue or not.
A child on the diet, who has had a decrease in seizures, usually continues taking antiseizure medicine, but may be able to take less of it later on. If a child does very well, the doctor may slowly taper the medication with the goal of discontinuing it altogether.
About a third of children who try the ketogenic diet become seizure free, or almost seizure free. Another third improve but still have some seizures. The rest either do not respond at all or find it too hard to continue with the diet, either because of side effects or because they can't tolerate the food.
A side benefit of the diet is that many parents say their children are more alert and make more progress when on the diet, even if seizures continue. If the diet seems to be helping, doctors will usually prescribe it for about 2 years. Then, they may suggest that parents slowly begin including regular food in the child's diet to see if the seizures can still be controlled, even with a normal diet.
Sometimes a small amount of seizure medication is started again after the diet is stopped. However, some children may be able to stay seizure free without any further treatment. If the seizures return, the doctors may recommend putting the child back on the diet.
Like all the other treatments for epilepsy, the ketogenic diet has side effects, which may or may not affect a particular child. Some side effects may go away if caught and managed early on. Knowing what to look for can make a big difference. Reported side effects include dehydration, constipation, and, sometimes, complications from kidney stones or gall stones.
Adult women on the diet may have menstrual irregularities. Pancreatitis (inflammation of the pancreas), decreased bone density and certain eye problems have also been reported. Again, this is why the medical team closely follows children or adults who are on the diet.
The diet lacks several important vitamins which have to be added through supplements. Sometimes high levels of fat build up in the blood, especially if a child has an inborn defect in his ability to process fat. This possibility can lead to serious effects, which is another reason for careful monitoring.
Making the Decision
Most experts say the diet is worth trying when two or more medications have failed to control seizures, or when medications cause side effects that are having a harmful effect on a child's life. It also helps to have a child who is willing to try foods that he might otherwise not be enthusiastic about, and is tolerant and not fussy about eating.
The diet seems to work for more than one kind of seizure, and for children who have a lot of seizures or few seizures. But most doctors say it shouldn't be used instead of medications if the drugs are working and the child is not having side effects. Parents generally decide to try the diet because they hope it will give their child a better chance for seizure control.
Join our eCommunities Parents Helping Parents online forum to meet others whose children are using the ketogenic diet.
However, the diet can be a barrier to some normal life experiences for children, especially those that revolve around food and holidays. And, like other treatments for epilepsy, it also can have side effects that affect some children more than others. So, as with any kind of treatment, there is a lot to think about before deciding to try the diet.
Going over all the possibilities with your doctor is the best way to make the decision. It may also be helpful to talk with other parents whose children have been on the diet, or review a typical menu with a nutritionist.
Tips for Parents
- Don't be too worried about the initial fasting process when starting the diet; most children handle it surprisingly well because of the promise of fewer seizures.
- Getting into a routine when fixing meals should make things easier.
- Involve your child in measuring his food by guiding him while he places food on the gram scale.
- Your child may feel hungry (because the diet restricts calories) and may try to sneak food from the refrigerator, and even from the pet's dish. Using water with saccharine, and splitting meals in half may help fight hunger pains.
- • Use a salad plate to present each meal, because the smaller plate makes it look as if the child is getting more food.
- If your child loves dessert, always keep a stock of homemade cream Popsicles in the freezer. These are then calculated into meal plans.
- Keep a few pre-prepared meals in small plastic containers in the fridge. Label them carefully for your older child's use if you are not home or your child goes to a friend's house.
- Steam vegetables for best nutritional value.
- Be creative with meal choices!
- Cut foods into interesting shapes to make them more appealing.
- Ask your child about her favorite keto food and serve it as a treat.
- Praise your child often for being so cooperative and sticking with the diet.
- Check with your doctor about how to handle days when it's hot and your child perspires more than usual.
More than 80 years ago, there were reports that seizures could be prevented by fasting, a discovery that led to the development of the ketogenic diet. The diet mimics what the body does when deprived of food.
It was used widely until effective medications to prevent seizures were developed. For most people, it was easier to take pills or tablets than to make major changes in diet.
However, the ketogenic diet continues to be offered to children with hard-to-control epilepsy by Johns Hopkins Medical and a few other specialized medical centers.
Families and doctors became aware of it again in the 1990s. Film producer Jim Abrahams made a TV drama based on the experiences of his two-year-old son whose seizures were successfully controlled by the diet.
As demand for the diet grew, researchers began to study it. It’s now offered at most children’s hospitals by individual physicians familiar with its use.