In some children with epilepsy, medication fails to control seizures. As many as 30-40% of people with epilepsy have this problem, sometimes called intractable epilepsy.
The team at the Barrow Neurological Institute at Phoenix Children’s believes surgery or other appropriate therapies should be considered early for children with intractable epilepsy. Sadly, less than 1% of such children are evaluated for epilepsy surgery.
Families may be afraid to consider brain surgery on a child. Such resistance is understandable, but it’s important to keep in mind that epilepsy surgery has changed many children’s lives and potential futures for the better. Overall, epilepsy surgery has been shown to greatly reduce the frequency of seizures. It could even lead to a seizure-free life.
Living with poorly controlled epilepsy can affect a child’s development, relationships and education. Uncontrolled seizures can cause disability and increase the risk of SUDEP (sudden unexplained death in epilepsy patients).
How We Can Help
If your child has intractable epilepsy, more advanced care is needed. Ask your child’s primary care doctor for a referral to one of our epilepsy subspecialists.
Our team will evaluate your child and determine what the best next steps may be. Every child is unique, so meeting with an epileptologist can give you a better idea of which options are available for your child.
Options for your child may include:
- Respective epilepsy surgery, the most common epilepsy surgery, removing brain tissue that is determined to be causing seizures
- Minimally invasive laser ablation
- Responsive neurostimulation (RNS)
- Vagus nerve stimulations (VNS)
- Deep brain stimulation
- Dietary therapies using the ketogenic diet
Evaluation: What to Expect
At your first visit, we’ll gather a detailed history and perform a physical examination of your child.
At or before your child’s first visit, we’ll need to know your child’s original diagnosis, any medications that have been tried, and what prior tests and examinations have revealed. If your child has already seen one or more neurologists, we’ll need the records from those visits. They include test reports, images and clinical notes.
Not every child is a candidate for a resection or laser ablation. If your child may be a candidate, our team will proceed with further evaluation.
A first step is a presurgical evaluation in our Pediatric Epilepsy Monitoring Unit. Your child will be admitted for several days so that we can capture and observe seizures. We’ll evaluate the seizures’ physical features in detail and compare them with EEG findings.
Your child may need additional tests, such as:
- An updated magnetic resonance imaging (MRI) scan, using a resting state fMRI. This test can help us understand the underlying brain networks and target where seizures are coming from.
- A positron emission tomography (PET) scan. This test looks at the way the brain metabolizes glucose, or sugar. It can sometimes give us clues about areas that aren’t functioning well and that are potentially a source of seizures.
- A single-photon emission computed tomography (SPECT) scan. This test looks at blood flow to the brain when your child is having a seizure, compared to when he or she is not having a seizure. By comparing the difference in activity, we may gain information about the seizure’s source.
- A magnetoencephalogram (MEG) scan, which looks at magnetic currents that may show epileptic or epileptiform features, such as spikes or sharp waves. This test can provide information to complement findings from the scalp EEG.
- Neuropsychological testing, to test your child’s different domains of intelligence. These tests may help identify regions of the brain that are not working well. This information could help us detect dysfunction in the brain’s networks.
When Further Testing Is Needed
All or some of these tests may be recommended by your child’s epileptologist based on the situation. Some children can move directly to surgery following these tests. Others need more evaluation with stereo EEG (SEEG) or subdural grid placement.
Stereo EEG (SEEG)
SEEG is used to identify where seizures start. Surgeons insert electrodes into the brain through small holes drilled in the skull. The electrodes are positioned with a robotic device. After the procedure, your child will be transferred to the Epilepsy Monitoring Unit. That’s where the epilepsy team will monitor brain activity for seizures.
Subdural Grid Placement
Subdural grid placement is another method of mapping the location of seizures. This method is used when an area over one side of the brain, near the surface, is suspected to be the cause of seizures. For this, the surgeon removes part of the skull — called a craniotomy. They place electrodes directly on top of the brain surface. Following placement, your child will go to the Epilepsy Monitoring Unit, so that the epilepsy team can determine where seizures are starting.