Slightly more than half of the children who have epilepsy need treatment only temporarily. This simple and positive fact raises important questions: Which children should be treated? How much medication should they receive? How long should the seizure medicines be used?

In recent years, doctors have changed their minds about the use of seizure medicines. Several decades ago, the prevailing attitude was that seizures must be stopped at all costs, and once seizures had been stopped, that the medications should be continued indefinitely. This outdated approach reflected an overly pessimistic outlook on life with epilepsy. The risks of seizures were overestimated and the adverse effects of medications were underestimated. Issues such as the quality of life, or how patients felt about the frequency and severity of seizures and the adverse effects of therapy, were rarely considered, and the natural course of epilepsy in children was poorly understood.

The past several decades have witnessed a dramatic growth in our knowledge. We are now familiar with the natural history of various seizure types and epilepsy syndromes and understand more about the safety of discontinuing treatment with seizure medicines for specific forms of epilepsy.

Stopping Seizure Medicines

Most children who remain seizure-free while taking medications for 1 or 2 years can safely have their medications slowly tapered by their doctors and eventually discontinued. Most of these children will not have another seizure. If seizures do return, they almost always can be easily controlled by taking the medication again. During the past decade, there has been a trend toward discontinuing medication earlier rather than later because the chances of staying seizure-free after 1 or 2 years of treatment are similar to those after 3 or 4 years. Among children who remain seizure-free while taking seizure medicines for 2 years, approximately 65% will remain seizure-free after the medication is stopped.

Several factors are known to influence the risk that seizures will return. These are helpful in deciding whether to stop or continue taking seizure medicine. After analyzing the risks and benefits, however, making this decision for a specific child is a trial-and-error process.

The table below shows some of the factors that are associated with the risk that seizure-free children will have another seizure after medications are stopped. (The numbers are the percentage of children who will have more seizures.)

 

 

 

 

 

EEG: No Epileptiform Discharges

EEG: Epileptiform Discharges

 

 

Diagnosis

Neuro Exam Normal

Neuro Exam Abnormal

Neuro Exam Normal

Neuro Exam Abnormal

 

 

Tonic-clonic

30%

51%

47%

73%

 

 

Simple partial

50%

75%

71%

92%

 

 

Complex partial

58%

83%

77%

96%

 

 

Source: Camfield PR et al., Neurology 1985;35:1657-1660.

 

 

 

 

Favorable signs for remaining seizure-free, based on the study shown in this table and others, include:

  • epilepsy with no identifiable cause for the seizures (frustrating for parents and doctors, but best for the child)
  • normal development and neurological function
  • no abnormalities on the electroencephalogram (EEG) that are characteristic of epilepsy ("epileptiform discharges")
  • seizures that are easily controlled with medication

If all of these conditions are met, the child has an excellent chance of remaining seizure-free after seizure medicines are stopped. If none of these favorable signs are present, the chance of seizures recurring after medication is stopped is 50% or more.

No matter how good the odds, there is a chance that the seizures may recur, and no matter how bad the odds, there is a chance that they will not. Many cases fall between the extremes, making the decision more difficult. As a general rule, it is usually worthwhile to attempt to discontinue the medication after 2 years. When the child has two or more risk factors for seizure recurrence (first seizure after 12 years of age, neurological or intellectual disabilities, or complex partial seizures), it may be reasonable to continue the medications until the child has been seizure-free for 4 years before attempting to withdraw them.

Whatever the odds, the decision to taper and discontinue medications should be made by the doctor and the parents together. The child's opinion is also valuable if he or she is old enough and understands the issue.

Some times are better than others for stopping medication. For example, a girl who is on a gymnastics team and who does difficult routines and dismounts on the uneven parallel bars probably should not begin tapering medications shortly before or during the gymnastic season. Summer camp, when the child will be swimming and boating, presents a similar situation. It is a good idea, if possible, to stop medications at least a year before a teenager is eligible for a driver's license.

When all of these risks are considered, some parents and children may ask, "Why not simply continue to take the seizure medicines? They don't seem to be doing any harm." If there is a moderate to high risk of seizure recurrence, and the medications have few adverse effects, the risks of stopping the drug may outweigh the benefits. Stopping the medications has important benefits that make it worthwhile considering their discontinuance.

Risks of Stopping Medication

One parent's story: "I was frightened when the doctor recommended that we take Katie off the Tegretol. Of course, I wanted her off all medications, but even more, I wanted her seizure-free. We lowered the medication slowly. I slept poorly for months, thinking that any noise in the house was a seizure. She's been off medication for 3 years, and has had no seizures."

The most obvious danger of stopping the medications is the chance that seizures will recur. If the medications are stopped abruptly, a recurrent seizure might be more severe or prolonged than the previous seizures. When any medication is withdrawn, the body reacts and undergoes chemical, electrical, and hormonal changes that may cause problems.

Discontinuation of some seizure medicines can also cause a withdrawal reaction. The rapid withdrawal of barbiturates (phenobarbital and Mysoline [primidone]) and benzodiazepines are associated with the highest risk of a seizure or unpleasant symptoms such as anxiety, irritability, a racing heart, difficulty sleeping, sweating, abdominal pain, vomiting, and problems with concentration. Benzodiazepines used to control seizures include:

  • Klonopin (clonazepam)
  • Tranxene (clorazepate)
  • Valium, Diastat (diazepam)
  • Ativan (lorazepam)
  • Frisium (clobazam)

All withdrawal symptoms are reduced (and in many cases eliminated) when the dosage is lowered slowly. When seizure medicines are properly discontinued slowly, the risk of a withdrawal seizure is very small. Rapid discontinuation of any seizure medicine can be dangerous, however, and should only be done under a doctor's supervision. Abrupt withdrawal can cause dangerous, long-lasting seizures called status epilepticus.

When an antiepileptic drug is tapered or withdrawn, seizures may occur simply because the drug was needed to control them. Depending on the type and severity of the seizures, the medications may need to be re-started, although the child may remain seizure-free at a lower dosage than before. Differentiating this type of seizure recurrence from a withdrawal seizure is important, because withdrawal seizures can be managed by a temporary increase in the dosage followed by more gradual tapering.

If the medications are stopped, the child, family, and school need to be prepared for the possibility that a seizure could occur. If the child has been seizure-free for 2 years or more, people tend to forget to take precautions. During the tapering and for at least 3 to 6 months after stopping the medications, the child's risk of a seizure is somewhat higher than usual. (Three-quarters of seizure relapses occur within 1 year of stopping the medication.) During this time, simple precautions should be taken, such as:

  • The child should not swim without close supervision or climb to high places.
  • First aid should be reviewed with the child, the parents, and other caregivers.
  • The usual medication should be kept on hand in case the child's seizures recur.
  • If a seizure occurs, it may be appropriate to give the child a single dose of medication before contacting the doctor.
  • If status epilepticus is a concern or access to medical care is a problem, parents should be taught how to administer Diastat (diazepam rectal suppositories, for all age groups) or Ativan (lorazepam), which can be placed under the tongue of an older child or a teenager, when a seizure lasts longer than 5 minutes.
  • A child who has a recurrent seizure is expected to be depressed, upset or angry, but if the mood change persists longer than a week, a visit to the doctor is recommended.
  • It may be comforting to use an intercom system between the parent's and child's bedrooms or an alerting device like a baby monitor at bedtime or when the child is asleep, in case of a seizure.

If a seizure occurs after a period of freedom from seizures, it is an emotional setback for both the child and the family. Parents must be prepared for this possibility and discuss it with the child. When people are aware that something is possible, they are much better able to handle it if it happens. Although children often will privately worry about the possibility of having another seizure, their fear diminishes with time.

A rare consequence of discontinuing the medication is the reemergence of difficult-to-control seizures or the development of intolerance to a medication that was previously well tolerated. Luckily, these situations are very uncommon.

Benefits of Stopping Medication

In the best of all worlds, when the medications are stopped, seizures will not recur and the child will enjoy the freedom of good health without medication. When a child has been taking a medication for more than 2 years, it can be difficult to estimate the effect that it has on the child's behavior. This is particularly true if the dosage was gradually increased over a long period. In many cases, although the medication was thought to have no unwanted side effects, the child's alertness, ability to concentrate, memory, ability to reason, and behavioral problems such as irritability and hyperactivity improve after the medication is stopped.

Some seizure medicines, however, can have positive effects on a child's behavior, and occasionally their discontinuation is associated with increased behavioral problems. Some of the medications that may have this effect are:

  • Tegretol or Carbatrol (carbamazepine)
  • Trileptal (oxcarbazepine)
  • Lamictal (lamotrigine)
  • Depakote or Depakene (valproic acid)

For a few people, long exposure to a medication (usually more than 2 to 5 years) can cause problems such as thinning bones. Phenobarbital and Dilantin (phenytoin) can cause soft-tissue growths. Dilantin or Phenytek can also cause nerve injury, excessive hair growth, and damage to the cerebellum of the brain, which helps with coordination. Finally, girls who continue taking medication and want to become pregnant later in life will expose their babies to a higher-than-normal risk of birth defects. All of these problems can be avoided by stopping the medications as soon as possible. And because we cannot assess all of the long-term consequences of taking medications, discontinuing them may have other benefits that we haven't discovered.

Long-term Treatment

Although most forms of childhood epilepsy are outgrown, some forms are associated with a high risk of recurrent seizures if the medications are stopped. If the EEG shows patterns characteristic of epilepsy or such patterns arising from multiple regions of the brain, the risk of seizures after stopping medications is high. Juvenile myoclonic epilepsy, for example, is associated with a high rate of seizure recurrence after medication is stopped. This epilepsy disorder varies dramatically in its severity, however, and some children have only mild myoclonic jerks a few hours after awakening. For them, stopping the medication may be reasonable. In Lennox-Gastaut syndrome and the progressive myoclonic epilepsies, the seizures are severe and difficult to control. If control is achieved, it is usually wise to continue the medication. For these children, it is more reasonable to try to reduce the dosage of the medication slightly than to discontinue it.

 

Authored by: James W. Wheless, MD | Joseph I. Sirven, MD
Reviewed by: Joseph I. Sirven, MD | Patricia O. Shafer, RN, MN on 8/2013
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