What you need to know
The consequences of drug-resistant seizures in children
Seizures, or abnormal brain waves between seizures, can affect how the brain functions. This is especially true if seizures start early in life. They are often associated with intellectual impairments, epileptic encephalopathy, and autism.
Seizures can cause cognitive decline, especially generalized tonic-clonic seizures. Complex partial seizures are associated with decline in memory and executive functioning skills.
Ongoing seizures can stunt development
Developmental arrest – where the child’s cognitive and motor functions “freeze in time” – can occur if drug-resistant seizures do not stop. Infantile spasms and other seizure types can cause child’s development to stop almost completely.
Seizures can cause psychiatric dysfunction
Drug-resistant seizures, as well as the abnormal EEG in between seizures, can cause a child to have epileptic encephalopathy – a serious disturbance in overall mental function and cognitive impairment. This can, for example, cause symptoms such as autistic characteristics. Language may be slow to develop or regress significantly.
Prolonged seizures can cause brain damage, organ failure, and death
Prolonged seizures, including status epilepticus (defined as a seizure that continues for more than half an hour or when a child has several seizures without time to recover between them) can cause brain damage, including fast and profound damage to the hippocampus, amygdala, and piriform cortex, and lesser damage to the cerebral cortex, cerebellum, and thalamus.
They can also cause organ failure and sometimes death.
Seizures, especially in childhood, may cause autism
The greatest risk for developing autism for children with epilepsy is among children whose seizures begin at age two or earlier.
Seizures cause seizures
Just like a tiny little spark can kindle a raging forest fire, even the smallest, seemingly benign electrical activity in the brain can escalate into generalized convulsions. This phenomenon, known as kindling, causes the seizures to spread to other parts of the brain. These seizures often take over the motor cortex in stages and can eventually impair the child’s ability to walk and speak.
Some conditions are drug resistant by their very nature. Epilepsy surgery should be considered sooner rather than later.
There are many brain malformations and other epilepsies known to be drug resistant by their very nature – this means that there are currently no known drugs, or drug combinations, which will stop seizures caused by these conditions. For example, Rasmussen’s encephalitis is considered a drug-resistant condition.
In rare circumstances, some children with hemimegalencephaly, polymicrogyria, and other cortical dysplasias may find seizure control; however, these conditions are generally known to be drug resistant.
“most children presenting with seizures and a radiological diagnosis of focal cortical dysplasia will develop drug-resistant epilepsy and are candidates for epilepsy surgery.”
Ido Ben Zvi, Noelle Enright, Felice D’arco, M. Zubair Tahir, Aswin Chari, J. Helen Cross, Christin Eltze, Martin M. Tisdall. Children with seizures and radiological diagnosis of focal cortical dysplasia: can drug-resistant epilepsy be predicted earlier?. Epileptic Disorders. 2022;24(1):111-122. doi:10.1684/epd.2021.1368
Infantile spasms can have serious consequences
Infantile spasms are a dangerous form of seizures. They are associated with a significant risk of mortality. They can also cause severe developmental challenges. Approximately 31% of children with infantile spasms will die and another 45% will have IQ below 68. If your child has infantile spasms, it is critical to stop them as soon as possible.
Sudden Unexplained Death in Epilepsy
Sudden unexplained death due to epilepsy (also known as SUDEP) is a serious risk for any child with drug-resistant seizures. SUDEP is the unexpected death of an otherwise healthy person with epilepsy, where no cause of death has been found. Causes of SUDEP are still unknown, but some research points to cardiac or respiratory dysfunction caused by seizures or abnormal EEG patterns.
The death can occur after a seizure or unrelated to seizure (known as non-seizure SUDEP). The chances of a person with epilepsy dying due to SUDEP is 1 in 1,000; however, this risk increases significantly if the person has drug-resistant epilepsy. For a child with drug-resistant epilepsy, the chances of dying due to SUDEP is 1 in 150.
New research shows that epilepsy surgery can decrease a child’s chances of dying of SUDEP by 300%.
- SUDEP Facts (Danny Did Foundation)
- SUDEP Program (Epilepsy Foundation)
- SUDEP Information for Parents of Children with Epilepsy (Centers for Disease Control)
Sudden unexplained death due to epilepsy (also known as SUDEP) is a serious risk for any child with drug-resistant seizures. SUDEP is the unexpected death of an otherwise healthy person with epilepsy, where no cause of death has been found. Causes of SUDEP are still unknown, but some research points to cardiac or respiratory dysfunction caused by seizures or abnormal EEG patterns.
The death can occur after a seizure or unrelated to seizure (known as non-seizure SUDEP). The chances of a person with epilepsy dying due to SUDEP is 1 in 1,000; however, this risk increases significantly if the person has drug-resistant epilepsy.
For a child with drug-resistant epilepsy, the chances of dying due to SUDEP is 1 in 150.
New research shows that epilepsy surgery can decrease a child’s chances of dying of SUDEP by 300%.
- SUDEP Facts (Danny Did Foundation)
- SUDEP Program (Epilepsy Foundation)
- SUDEP Information for Parents of Children with Epilepsy (Centers for Disease Control)
Don’t wait! Know all your options now.
If your child has drug-resistant epilepsy, ask your child’s neurologist to refer you to a level 4 epilepsy center to start the surgical evaluation process. Remember – having a surgical evaluation doesn’t mean you have decided your child will have surgery. It means you have decided to understand all treatment options early so you can make an informed decision for your child.
Resources
- Epilepsy Foundation: Develpmental and epileptic encephalopathies
- Child Neurology Foundation Disorders Directory: Epilepsy
- International League Against Epilepsy: Drug-resistant epilepsy
Sources
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Cross, et al. Proposed criteria for referral and evaluation of children for epilepsy surgery: Recommendations of the sub commission for pediatric epilepsy surgery. Epilepsia. 47(6):952-959 (2006).
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