What is status epilepticus?
Status epilepticus is a medical emergency that can eventually cause brain damage. It happens when a seizure continues for a long time (more than 30 minutes) or when a child has several seizures without time to recover between them.
While a child is in status epilepticus, they are at risk for breathing failure, choking or aspiration (breathing in a foreign object like food or saliva), pulmonary edema (fluid in the lungs), organ damage and even death. If your child is having a prolonged seizure, contact emergency services at once.
What does status epilepticus look like?
Status epilepticus can happen with any seizure type and looks different with different seizures. Convulsive status epilepticus, the most visible form, is the most common and most dangerous form of status epilepticus. Non-convulsive status epilepticus is not always as easy to see, but it also may have serious effects.
Convulsive status epilepticus
Convulsive status epilepticus consists of tonic-clonic, tonic, clonic or myoclonic seizures that continue for 30 minutes or more. The seizures may be continuous or the child may have seizures that repeat at brief intervals without the child regaining awareness between seizures.
Non-convulsive status epilepticus
There are several different forms of status epilepticus in which the child does not go into convulsions but instead may just seem confused or sleepy. The seizures are continuing in the brain and will be diagnosed only if an EEG is done.
After prolonged convulsive seizures, some children will stop convulsing and develop non-convulsive seizures.
What causes status epilepticus?
It is not entirely clear what happens in the brain to cause a child to have status epilepticus. Researchers know that it is a complex process that seems to be linked to a loss of inhibition mechanisms in the brain (the ability to slow down overactive firing of the brain cells), poor blood flow, decreased use of glucose (sugar) and decreased oxygen consumption.
Convulsive status epilepticus may result from:
- infection
- not enough sleep in an individual prone to seizures
- fever
- metabolic disorder
- suddenly discontinuing or forgetting to take anti-epileptic drugs
- poorly controlled epilepsy, even without an obvious precipitating factor
- alcohol or street drugs
- some other chronic medical conditions
A child is at higher risk for status epilepticus if:
- they have a known cause for their epilepsy
- their neurological examination is abnormal
- they are younger than six years old when they develop epilepsy
The risk of status epilepticus is highest when the child has recently developed epilepsy. In one study, 90% of cases of status epilepticus occurred within two years after the child’s epilepsy began.
How many children have status epilepticus?
Status epilepticus is quite common, particularly in children with epilepsy. One study found that over a period of five years from the first diagnosis of epilepsy, 20% of people had at least one episode of convulsive status epilepticus. Another study found that 27% of children with epilepsy have had an episode of status epilepticus. The earlier a child develops epilepsy, the more likely they are to have status epilepticus at some point. Among children who develop epilepsy before they are one year old, 70% are expected to have an episode of convulsive status epilepticus.
Convulsive status epilepticus is the first seizure in about one-third of people with epilepsy.
How is status epilepticus treated?
A child in status epilepticus should be taken to hospital, where they will be treated with intravenous medications. The most commonly used medications to treat status epilepticus are benzodiazepines, levetiracetam, phenytoin or fosphenytoin and phenobarbital. If intravenous access is not available, the health-care providers may administer the medication by intramuscular (injection in the muscle), buccal (between the gums and cheek) or intranasal (in the nose) route. A child may be given one or more of these medications, depending on how quickly the seizures stop.
The health-care team will also work to support the child’s vital functions and maintain a normal body temperature. They will monitor breathing, heart rate, blood pH and levels of various substances in the blood, such as glucose and electrolytes.
Refractory and super refractory status epilepticus
Around 10-30% of patients with status epilepticus may develop refractory status epilepticus This is when status epilepticus continues despite the administration of two medications. These children are managed in the intensive care unit and need more anti-seizure medications or anesthetic agents to stop the seizures. They are also started on continuous EEG monitoring to confirm that seizures have stopped in the brain as well.
A small number of patients with status epilepticus (5%) will continue having seizures for longer than 24 hours, despite the use of anesthetic agents. These children are said to have super refractory status epilepticus.
What should I do if my child has status epilepticus?
Status epilepticus is a medical emergency. If you suspect that your child is in status epilepticus, call 911 or emergency services immediately. If you have been prescribed a rescue medication for your child by your child’s health-care provider, administer the rescue medication as advised.
If your child is having convulsive status epilepticus, ease them onto the floor or a bed to prevent injury. Try to keep your child on their side so that if they throw up (vomit) they won’t breathe it into their lungs.
If a child often has flurries or clusters of seizures, their health-care provider may prescribe a “rescue” medication to stop the seizures from progressing.
What is the outlook for a child with status epilepticus?
Rapid treatment for status epilepticus is important, since the longer it continues, the harder it is to stop. Most damage to the brain during status epilepticus comes from continuing electrical seizure discharges. However, in most cases status epilepticus can be stopped quickly.
The recurrence rate of status epilepticus is around 20% within four years of the first status epilepticus episode. Most of the recurrences occur within the first two years. It is rare for status epilepticus to have severe consequences and in most cases the child will be fine after recovering from the status epilepticus. Children with super-refractory status epilepticus may have long lasting problems, including intellectual and motor disability, and drug-resistant epilepsy.
A study that followed children diagnosed with epilepsy over the long term found that having status epilepticus did not increase the risk of death among children with epilepsy and had only a small impact on the chances of seizures stopping over the long term. In children without other neurological problems, the social and educational outcomes were similar in those who did and did not have status epilepticus.