Epilepsy is a syndrome diagnosis. It's a symptom that describes brainwave abnormalities. There are underlying causes that need to be evaluated. MRI of the brain to look for structural abnormality, EEG to look at characteristics of the brainwave activity so the physician can categorize which type or types of seizure the patient has. Then there are, in some children, genetic causes, neurometabolic causes or auto-immune causes that can be looked at.
A seizure action plan is a roadmap for nurses and teachers at school to help your child should a seizure happen at school. It includes information about what type of seizure, what your child's seizure looks like, and if there is any anti-seizure medication that should be used while the seizure is happening to shorten the seizures or how to contact the family should prolonged seizures happen.
So most seizures are brief. Depending on the patient, there are absence seizures that are five to six seconds. Other patients may have generalized tonic-clonic seizures, which last two to three minutes. Those short, brief seizures, although it may feel like a lifetime for parents, they do not cause negative impact on growth and development. However, we do have to worry about prolonged seizures that are greater than five minutes or multiple seizures, generalized tonic-clonic seizures, more than three in an hour, in which case, your doctor may talk to you about a seizure action plan.
This depends on the seizure type. For the absence seizures, which are subtle staring, this depends on your observation of how often this is happening to your child. For those patients where it's not possible or practical to monitor all the time, it is helpful to ask and talk to your physician about EEG monitoring with video ongoing. This could be helpful for those subtle seizures that are less detectable by visual inspection. For those patients who have nocturnal seizures, where it's not practical to monitor consistently when everyone is asleep, video EEG monitoring can also be quite helpful in determining the seizure frequency. For those patients who have generalized tonic-clonic seizures where there are convulsive movements, there are FDA-cleared devices, wearable devices, that can detect these generalized tonic-clonic seizures based on movements.
About a third of the patients with epilepsy can continue to have seizures despite appropriate treatment. In those patients, evaluation for surgery can be an option. Epilepsy surgery can be an option for those patients who have a focal epilepsy, where a focus can be identified and safely removed. Epilepsy surgery is also an option for certain types of generalized epilepsy, where disconnection surgery can be performed.
First of all, be prepared with your questions when you come to your clinic visits. Come with your observation of the different seizure type or types that you've observed, know what the duration of the seizures are and have a seizure calendar so that you and your physician and your care team can review the frequency of your seizures.