The Art of Treating Epilepsy: The Team Behind Aaden's Care
This is the second in a series as we follow a Cook Children's patient and the art of treating epilepsy. Click here to read the first part of the series.
They gather in a conference room, just like one found in corporate offices and businesses across the country.
But in this room, the discussion isn’t about mergers or quarterly profits. Their discussions center on the quality of life for a child and matters of life and death.
The men and women meeting on this morning are part of the Justin Neurosciences Program at Cook Children’s. They meet weekly to discuss complex epilepsy cases and to plan the treatment ahead for each patient.
Sitting around the table are epileptologists, neurologists, neurosurgeons, neuropsychologists, neuroradiologists, an epilepsy program coordinator and the epilepsy research project manager.
This is a frequent occurrence at Cook Children’s. A dedicated team coming together to map out their treatment plan for their young epilepsy patients, most for whom conventional treatments have not yet been successful
“A good epilepsy program will have representation from neurosurgery, neurology, neuroradiology and neuropsychology at the least there to discuss,” said M. Scott Perry, M.D., an epileptologist and Medical Director of Neurology at the Jane and John Justin Neurosciences Center at Cook Children’s. “What is good about our team is that it is an even exchange between us all. When we gather together, we aren’t just telling each other what to do, but we are making suggestions, discussing risks and benefits and giving everyone an opportunity to ask their own questions given their unique knowledge of epilepsy. No one person runs the show. It is a team effort - always.”
The last patient discussed on this morning is Aaden Balderamos. Aaden, who will turn 3 years old in December, has been a patient at Cook Children’s since he was 2 days old when he was transported by a Cook Children’s ambulance to the Neonatal Intensive Care Unit.
Aaden was diagnosed with tuberous sclerosis complex at 4 days old after tumors were found in his heart and in his brain. He developed epilepsy soon after.
Tuberous sclerosis complex (TSC) is a genetic disorder that causes benign, or nonmalignant, tumors to form in many different organs in the body. The brain, heart, kidneys, skin, lungs and eyes are some of the more critical locations that these tumors appear. When tumors form in the brain they can cause seizures, developmental delays, intellectual and mental disorders. TSC is also considered a leading cause of medically-intractable epilepsy and autism.
Aaden has tried a number of treatments up to this point, from conventional medications to research trials. While each helped reduce his seizures, none got rid of his seizures completely – thus the team recommended a presurgical evaluation to see if epilepsy surgery would be an option for his family to consider. Time spent in the Epilepsy Monitoring Unit at Cook Children’s gathered tons of data, including EEGs and multiple types of brain scans, showing that multiple areas in Aaden’s brain have the potential to cause his seizures, but the data begins to point to one area as the primary cause.
The data captured from video EEG and brain scans paint a picture for Dr. Perry (neurology), Dr. Donahue (neurosurgery) and Hayden Head, M.D. (radiology). Each test characterizes the seizures in a different way – the PET scan measures metabolism and energy production in the brain, while the SPECT scan measures blood flow, and the EEG electrical activity. All contribute like colors on a canvas, to paint the picture of where in Aaden’s brain his intractable seizures arise.
For Aaden, the seizures take place in the right hemisphere of his brain. The good news is motor and language function are a distance away from where the seizures arise, so they are unlikely to be at risk during a surgery. The bad news is the pathways that control vision are located near the suspected region of seizure onset and have the greatest potential for concern for the doctors and his mother, Stephanie.
At this point, while Dr. Perry and the team have narrowed the search for Aaden’s seizures to a single section of his brain, they want to be more precise – to locate the smallest area of brain possible causing his seizures and to avoid damage to important visual pathways. They recognize they have not yet collected enough data to decide the type of surgery Aaden needs, so Dr. Donahue will perform a stereoelectroencephalography on Aaden in November.
Stereo EEG means Dr. Donahue will place thin electrodes (think piano wires) in Aaden’s head, focusing on the region of brain the presurgical workup suggested was the source of his seizures. This minimally-invasive surgical procedure will be used to help Dr. Perry identify more precisely where Aaden’s seizures begin. Dr. Donahue will place the electrodes in specific, targeted brain areas using robot assistance and imaging in the operating room.
Once those EEG leads are placed, Dr. Perry will record additional seizures and narrow down the region of brain responsible for Aaden’s epilepsy. Once those areas are identified, it will make it easier for Dr. Donahue to resect, or remove, the location or locations causing the seizures in a later surgery and make for the best outcome possible for Aaden.
Stephanie says the mere thought of her little boy requiring surgery makes her sick to her stomach. For now she’s trying hard not think about. She said she will wait until it’s closer to the surgery to get “everything together.” It’s her way of coping.
“I get really nervous, just the thought of it. Aaden’s so little. He doesn’t know what’s going on. He’s without a care in the world,” Stephanie said. “He doesn’t know he needs surgery, brain surgery. He’s so innocent. He doesn’t deserve it. It makes me sad.”
But then the mom who has watched her child suffer since the day he was born pauses. She knows this is what’s best for her son. She hopes for seizure control. It would be life altering if her child didn’t have as many seizures a day or they could go week without them. But as a mom, she can’t help but hope for so much more.
“Aaden is already such a happy, little boy. I can only imagine how much better he would feel and how different his life would be if he was finally seizure free,” Stephanie said.
Level 4 Epilepsy Center
The National Association of Epilepsy Centers recognizes Cook Children's Comprehensive Epilepsy Program as a Level 4 Pediatric Epilepsy Center. Level 4 epilepsy centers have the professional expertise and facilities to provide the highest level medical and surgical evaluation and treatment for patients with complex epilepsy. Click to learn more about the program or call 682-885-2500 for a consultation or referral.