Finding out your baby is having seizures can be very scary. You probably have more questions than you can process. Arming yourself with knowledge is the best thing you can do for your infant, your loved ones, and yourself. The right knowledge will allow you to work with your medical team to give your little one the best possible outlook for the future.
Seizures, or convulsions, are sudden bursts of abnormal electrical activity in the brain. Neurons (brain cells) use electrical signals and chemicals to communicate with other neurons and our muscles so we can move, breathe, think, and more. This process is usually tightly regulated, but during a seizure, neurons fire out of control. Excessive firing can kill neurons or create connections that can make future seizures more likely. This runaway activity causes visible effects like jerking or shaking. Seizures may cause a loss of consciousness or altered awareness. These episodes can last anywhere from a split second to hours, but, on average, they last from 30 seconds to two minutes.
Infant seizures are often overlooked because of how different they are from adult and childhood seizures. Infants’ brains are not fully developed and therefore don’t behave the same way as a child’s or adult’s brain during an episode. Furthermore, because an infant’s brain develops rapidly, the way seizures appear can change as an infant grows. For example, in contrast with older children, babies do not usually experience a postictal period (the period after a seizure where a person is fatigued, confused, and may feel sick). The line between focal seizures, where part of the brain is involved, and generalized seizures, where the entire brain is involved, is blurred. Infants do not have classic tonic-clonic seizures, which is a seizure when a person loses consciousness, then has a period of extremely stiff limbs (tonic phase), followed by a few minutes of bending and straightening of the arms and legs (clonic phase).
Newborns (birth to 1 month of age) are more prone to certain kinds of seizures than others. The types of seizures your baby has can change as they grow.
About half of most neonatal seizures are described as “subtle” because their symptoms are easy to overlook. Subtle seizures cause horizontal eye movements, eye blinking, mouth motions, “swimming” motions, and brief periods of stalled breathing (apnea).
These seizures are more common in premature infants. Tonic seizures involve persistent limb straightening and stiffening and a steady eye gaze to one side.
Clonic seizures can be focal (occurring in one area of the brain) or multifocal (simultaneously occurring in multiple locations). In focal clonic seizures, one limb contracts and relaxes rapidly in a jerking manner. In multifocal clonic seizures, these movements spread to other areas of the body and may alternate sides.
In myoclonic seizures, the baby’s legs jerk forward toward their chest, and their upper body may jolt forward. These motions may alternate.
Older infants (1 month to 1 year of age) have different kinds of seizures than newborns. There is, however, a broad overlap. Older infants are susceptible to tonic, clonic, and myoclonic seizures but do not experience subtle seizures. Unlike newborns, however, they have focal seizures, multifocal seizures, and infantile spasms.
Focal seizures start in one part of the brain and their features will be specific to that area. During a focal seizure, infants may abruptly drop what they were doing and display impaired awareness of their surroundings. This was previously called a “complex partial seizure.” Focal seizures can include jerking motions on one side of the body. Focal seizures without altered consciousness were previously called “simple partial seizures.”
These are like focal seizures except that they occur in multiple regions of the brain. Infants undergoing multifocal seizures may have jerking motions that alternate back and forth between the left and right sides of their bodies.
In these seizures, the baby’s body leans forward as their knees draw inward toward the chest. Their arms spread outward. These episodes only last a few seconds but may occur in clusters. They are the hallmark of West syndrome (WS) and are synonymous with the disorder.
When a seizure or cluster of attacks occurs for more than 30 minutes, it is called status epilepticus. This is a severe, life-threatening condition that requires immediate medical attention.
Because seizures are usually the result of excessive electrical activity in the brain, they can be detected with an electroencephalogram (EEG). EEGs detect activity in the brain in the form of brain waves, which represent different brain regions working together. Electroencephalography can detect epileptic seizures while they’re occurring. Episodes with normal EEG readings are called nonepileptic seizures.
Your pediatric neurologist must make an official diagnosis, but understanding the major causes of seizures, their prognosis (what to expect in the future), and treatment options will help you with decision-making.
One major cause of infant seizures is structural damage. This is brain damage caused by head trauma, an injury sustained during birth, or brain disorders that develop in the womb. The most common brain injury that causes neonatal seizures is neonatal hypoxic-ischemic encephalopathy (HIE), which reduces blood flow and oxygen to the brain near or during birth. HIE is the leading cause of spastic cerebral palsy and causes seizures during and after the incident. Seizures caused by HIE include myoclonic, tonic, clonic, or subtle. Treatment depends on the type of seizure, and the prognosis depends on the severity of the injury and the main seizure type. Fortunately, the infant brain is strong and can recover well.
WS is characterized by developmental delay, infantile spasms, and an EEG brain wave pattern called hypsarrhythmia. WS normally begins between 4 and 8 months of age. It is the result of underlying causes like birth defects, genetic disorders, brain damage, and metabolic diseases. Infantile spasms typically end around age 5, but prognosis depends on the root cause. Children with WS do better if treatment starts quickly, so early identification is crucial. More than half of children with WS develop another seizure disorder. Treatment for WS includes hormonal therapy, antiepileptic medication (vigabatrin), and the ketogenic (keto) diet.
Dravet syndrome (DS) is a genetic epilepsy disorder in which children initially present with focal or generalized seizures before 15 months of age. Seizures in those with DS are prolonged, severe, and swap between sides of the body. They often happen when body temperature changes. Status epilepticus is common in those with DS. DS is caused by a mutation in the SCN1A gene, and genetic blood tests are required for diagnosis. Children with DS generally have normal early development with progressive developmental delays beginning in early childhood. The most common change in gait (walking) is crouched walking. Children also experience imbalance and appetite issues. Managing DS is difficult but may be achieved with drugs such as fenfluramine and cannabidiol.
Read more about Dravet syndrome's symptoms, causes, and treatments.
Infants with benign familial neonatal convulsions (BFNCs) have brief seizures that begin shortly after birth. BFNCs is a genetic condition, and although children can inherit it from their parents, it can also occur as a spontaneous genetic mutation. BFNCs typically resolve without treatment between 6 and 9 months of age.
Babies with Ohtahara syndrome (OS) begin having tonic seizures around 3 months of age and face severe developmental difficulties. OS generally causes a progressive decline in movement and brain function and is mostly caused by gene mutations or brain malformation. OS seizures are medicine-resistant and require a ketogenic diet or epilepsy surgery. Unfortunately, many children with OS die before the age of 2. Those who survive are often profoundly disabled.
Children with GLUT-1 deficiency syndrome (G1D) have a genetic condition in which the brain cannot properly use its main fuel source: sugar. They begin having seizures within the first few months of life. Those with G1D often have small heads, delayed development, and first present with rapid and erratic eye movements. A ketogenic diet often helps treat symptoms of G1D by using fat as an alternate fuel source for the brain.
The most common form of infant convulsions is fever-induced (febrile seizures). Febrile seizures can occur when a baby runs a fever over 101 degrees Fahrenheit. Febrile seizures occur between the ages of 6 months and 5 years old. Infants and children with febrile seizures will lose consciousness and have eye rolling, limb shaking, and limb stiffening. Febrile seizures are not considered epilepsy and are generally harmless and resolve on their own. Most children with febrile seizures will not develop epilepsy. However, febrile seizures (especially those that last a long time) can increase epileptic seizure risk in the future. Emergency services (911) should be called if the seizure lasts more than five minutes.
Read more about febrile seizures.
Idiopathic or cryptogenic seizures have unknown causes. Outcomes are unclear, and treatment takes a “try-and-see” approach until the cause is found. MRI or CT scans may be used to rule out brain tumors or malformations.
Epilepsy is often treated with antiepileptic drugs (AEDs) in adults and children, but there are other treatment options. Many AEDs are anticonvulsants that reduce seizures by slowing down neuron activity. Anticonvulsants help many people reduce attacks or become seizure-free. Several considerations go into drug choice — seizure type, age of onset, cause, and medical history must be taken into account. Treatment of infants demands further thought due to their unique biology.
AEDs like valproate and lamotrigine are used in older children and adults but aren’t appropriate for babies, except as a second-line add-on treatment. In infants, the anticonvulsants phenobarbitone and phenytoin are used with some effectiveness. Unfortunately, each of these drugs helps less than half of infants achieve seizure control. At high levels, they can potentially boost seizure control to 85 percent. However, the risk of harmful side effects also increases with higher doses. This has motivated scientists to investigate a drug called fosphenytoin as another possible treatment, but more research is needed. Benzodiazepines (sedative-type medications) are also sometimes used to treat epilepsy, but researchers are still studying if they are worth the side effects.
The keto diet may also be used to manage seizures. This diet involves a high-fat and moderate-protein diet with little to no carbs. It causes the body to use fats for energy instead of glucose (sugar), which helps to reduce the brain’s seizure activity. Therefore, a ketogenic diet may help some infants reduce symptoms or go into remission. This diet is particularly useful for children with WS and seizures caused by G1D. However, the best option is usually to simply wait it out, as seizures often decrease over time.
To get the most out of your doctor’s visit, it is vital to write down information to help them make an accurate diagnosis or treatment plan.
If your baby is having a seizure, remember not to panic. Make note of the time the seizure starts and stops. Place your child on a surface where they can’t fall (like the floor), lay them on their side, and be sure not to place anything into their mouth. Don’t try to restrain or hold down the child’s arms and legs. If their seizure lasts longer than five minutes, is notably different from normal, or is causing breathing difficulties, call an ambulance or take your child to the nearest hospital immediately.
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