When antiepileptic drugs fail to control or substantially reduce seizures, surgery on the brain may be considered. Although some of the techniques are recent, surgical removal of seizure-producing areas of the brain has been an accepted form of treatment for more than 50 years. Most surgical patients are adults who have fought long and unsuccessful battles for seizure control. However, children with severe seizures are also being treated with surgery.
Brain surgery can be a successful way of treating epilepsy. Surgery is most likely to be considered when someone with epilepsy:
Surgery for epilepsy is a delicate, complicated operation. It must be performed by a skilled, experienced surgical team. It is usually done at special medical centers that treat patients with epilepsy rather than at local hospitals. In addition to operations that remove a small part of the brain where seizures begin, other procedures may be done to interrupt the spread of electrical energy in the brain.
People who are going to have epilepsy surgery may have several special tests first. In some cases, electrodes have to be implanted in a separate operation to locate seizure sites deep in the brain. Sometimes these tests take days or even weeks to complete.
In some cases, the patient may be awake during part of the operation. This is not usually the case with small children. This is possible because the brain does not feel pain. Having the patient awake helps the doctors make sure that important parts of the brain are not damaged.
Afterwards, some seizure medications may have to be continued, usually for a year or two. Then, if no further seizures occur, the medicine may be slowly withdrawn. At this point, chances of living free of seizures and free of medication are good. However, many people will have to continue with medication and some do not benefit from surgery.
Vagal nerve stimulation therapy is another form of treatment that may be tried when medications fail to stop seizures. It is currently approved for use in adults and children over the age of 12 who have partial seizures that resist control by other methods. The therapy is designed to prevent seizures by sending regular small pulses of electrical energy to the brain via the vagal nerve, a large nerve in the neck.
The energy is delivered by a flat, round battery, about the size of a silver dollar, which is surgically implanted in the chest wall. Thin wires (electrodes) are threaded under the skin and wound around the vagal nerve in the neck. The battery is programmed by the health team to send a few seconds of electrical energy to the vagal nerve every few minutes. If the person with the system feels a seizure coming on, he or she can activate the discharge by passing a small magnet over the battery. In some people, this has the effect of stopping the seizure. It is also possible to turn the device off by holding the magnet over it.
Side effects of VNS therapy are mostly hoarseness and, sometimes, discomfort in the throat. There may be a change in voice quality during the actual stimulation. Although complete seizure control is seldom achieved, the majority of people who use VNS therapy experience fewer seizures. In some its effectiveness increases with time, and patients report an improved quality of life. As with surgery and the ketogenic diet, it will almost always be necessary to continue anti-epileptic medication although the patient should be able to take less medication than in the past.
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 diet begins, 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 round the clock by keeping calories 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 comes from carbohydrates and protein. 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.
Doctors don’t know precisely why a diet that mimics starvation by burning fat for energy should prevent seizures, although 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.
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.
A child on the diet usually continues taking anti-seizure 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 two 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 some 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.
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 bad side effects. Parents generally decide to try the diet because they hope it will give their child a better chance for a normal life.
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’s 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.