What Parents Should Know About Epilepsy Testing
We can all agree on one thing: epilepsy is no fun.
When a child begins having seizures, it can feel like your entire world changes overnight. Doctor visits, testing, medications, and fear of the unknown can feel overwhelming for both children and parents.
Over the next few blog posts, I want to walk families through some of the experiences children with epilepsy may face, especially the ones that can feel scary if you are not prepared. One of the biggest experiences for many families is an EEG and, sometimes, a hospital stay.
What Is an EEG?
EEG stands for electroencephalogram. This test measures the electrical activity in the brain.
One of our sons’ doctors once explained it to us like this:
“The brain is like a radio. A seizure is like static when the station isn’t tuned in correctly.”
That explanation always stayed with me.
An EEG helps doctors “listen” to the brain’s activity to better understand where seizures may be happening and how to properly treat them.
What Happens During an EEG?
There are several different types of EEGs a neurologist may recommend, depending on what they are looking for.
A Basic EEG
The first type is a shorter EEG that is often done in a neurologist’s office or clinic.
This test may be ordered if:
- Seizures are changing
- Epilepsy medications need adjusting
- A new type of seizure is suspected
- Doctors need updated information
These EEGs usually last anywhere from 2 to 4 hours, depending on how much information doctors are able to collect.
For many children, this is their very first epilepsy-related test, which can understandably feel intimidating at first.
Video EEG Monitoring
Another type of EEG testing includes video EEG monitoring. This may happen either at home with portable equipment or during a hospital stay.
These tests are longer than a standard office EEG and are designed to capture seizures that may not happen during a shorter test.
Doctors may use this type of video EEG to:
- Monitor nighttime seizures
- Observe seizure behaviors
- Identify different types of seizures
- Gather more detailed information than a clinic EEG provides
One important reason doctors sometimes monitor overnight is to look for nocturnal seizures, which are seizures that happen during sleep.
Nocturnal seizures are important to monitor because they are associated with an increased risk of SUDEP (Sudden Unexpected Death in Epilepsy). I plan to discuss SUDEP more in a future blog post because it’s something many epilepsy families hear about, but few people openly explain.
All three of my children experienced this type of EEG testing.
For my youngest daughter, doctors wanted to determine whether she also had seizures and the same genetic disorder as her brothers. Her 24-hour EEG lasted a full day so doctors could monitor her throughout the day and overnight.
Thankfully, we learned she did not.
Extended Hospital EEG Stays
In some cases, doctors may recommend a much longer hospital stay for EEG monitoring.
During these stays, patients are carefully observed over several days while connected to continuous EEG and video monitoring equipment.
Sometimes doctors may slowly reduce or stop seizure medications during testing in order to safely capture seizure activity and better understand what is happening in the brain.
While the idea of this can sound frightening, these tests often provide critical information that helps neurologists make safer and more effective treatment decisions for children with epilepsy.
For Parents: You Are Not Alone
If your child is preparing for an EEG or hospital stay, it’s completely normal to feel nervous.
Many parents worry about:
- What the test will find
- How will their child react
- Whether seizures will happen during testing
- What comes next
I’ve been there too.
The good news is that EEGs give doctors valuable information that can help families better understand epilepsy and move toward the best possible care plan for their child.
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