Mystery still remains about common neurological disorder
You may be surprised to learn that 1 in 26 people in the world will develop epilepsy at some point in their lifetime.
Despite those numbers, so much mystery still remains about this neurological disorder that can affect people of all ages.
Many misunderstand the disorder which, in turn, results in social isolation, stigma and fear.
So let's take a closer look at epilepsy with Scott Perry, medical director of Neurology at Cook Children's.
First of all, people are diagnosed with epilepsy after recurrent seizures or, in some cases, when testing indicates a high likelihood of seizure recurrence after a single seizure. Those seizures come in many forms, degrees of severity, and duration.
"We often don’t diagnose epilepsy after one seizure," Dr. Perry said. "First we have to determine if a seizure was provoked by something, for example low blood sugar, versus being unprovoked. If the seizure is unprovoked, you can be diagnosed if you have two or more seizures or if you have one seizure with testing that suggests a significant risk to have more."
So a single seizure is not a guarantee of epilepsy diagnosis. If your child has a seizure from a cause which is isolated or reversible such as low blood sugar, high fevers or a head injury that child most likely will not have another one and usually doesn't end up with a diagnosis of epilepsy.
Typically, if a person has a single seizure and the EEG is normal, the risk of further seizures is low enough that starting daily medications for seizure treatment is not necessary. However, if a person has more than one unprovoked seizure, the chances additional seizures will occur is higher and medications are often recommended regardless of EEG results. Similarly, there are situations in which the EEG is significantly abnormal after a single seizure such that the benefits of starting medications outweigh the risks of waiting for additional seizures to occur.
Finding the right medication and right dosage of medication to help a patient with epilepsy can be a difficult task for an epileptologist.
"Parents are familiar with the scenario of ear infections. You take your child to a pediatrician and you receive an antibiotic, go home, take it for 10 days and you are done," Dr. Perry said. "It doesn't work that way for seizure medicine. We start at the lowest dose that's known to be effective. We take that from the studies that have been performed that got the drug approved in the first place. That same dosage probably won't work for every single person. It doesn't mean the medicine doesn't work, it just might mean it's not the dose for this individual. We have to take it up to the next step to see how the child will do on that one.
"The child might still have a seizure on that dose and you have to take it up another step. So that gets a little frustrating for the parents. 'Why didn't you give the right dose the first time?' The answer is because the child might not need 60 miligrams per kilogram, you might respond to 20. Why would you give three times as much medicine as you need? It's our job to figure that out, but that process can be frustrating."
About 60 percent of people will be seizure free on the first drug they try, while another 15% will become seizure free on a second drug if the first fails. On average, two-thirds of patients will be seizure free with medication.
If your child still has seizures after the second or third medication tried, it's less likely that subsequent medications will be fully effective. In this case, more complicated treatments may be recommended or tried. These include:
- Combinations of medications
- A ketogenic diet (a high-fat, low-carbohydrate, low-protein diet)
- Implantation of a vagal nerve stimulator (an electrical pacemaker-like device placed in the chest and neck)
- Surgery to remove the affected part of the brain, if possible. In the right situation, epilepsy surgery can be very effective or may even cure a child of seizures, but overall it is done in less than 10% of epilepsy patients, and only after an extensive screening and evaluation process.
"We want kids to have as normal a life as they possibly can, understanding it's not going to be perfect because you have to take medications every day. You've got an unpredictable disorder that can jump on you at any moment." Dr. Perry said. "Our goal is to achieve seizure freedom with zero side effects. That is not always possible, but it should always be the goal.”