Guest blogger: Elaine O’Loughlin, PhD

Our daughter Fiadh (Fia) was diagnosed with infantile spasms at 5.5 months old. While the spasms resolved with steroids, another seizure type quickly emerged: focal tonic seizures. Her seizures were left-sided, which meant she was a surgical candidate. However, her malformation was not clearly identifiable – or “blurry” on Magnetic Resonance Imaging (MRI).

Our team opted for medical management, waiting until she was older (2 years at least) for more precise imaging. After trying two other medications, we found brief relief with vigabatrin (Sabril). A few months later, a minor cold triggered breakthrough seizures. Despite cycling through several treatments, the medical honeymoons grew shorter, and seizure control seemed out of reach. She was diagnosed with drug-resistant epilepsy.

We faced multiple hospital admissions, relied on rescue medications, and watched as her seizures took a toll on her development and daily life. As a parent, it is bizarre to “wish for brain surgery,” but this seemed the only option that could provide relief.

Getting More Data Safely

Despite being a surgical candidate, the approach was not straightforward. Initially, we were planning a temporal lobectomy, but Fiadh’s seizures began 5-7 seconds before the electroencephalography (EEG) signal could detect them, suggesting that deeper structures were involved.

Fast forward two years, when Fiadh was now 2.5 years old, after gathering second opinions that aligned with our Boston Children’s Hospital (BCH) team, we planned a stereoelectroencephalography (SEEG) to try to find the source of Fiadh’s seizures. Fiadh would be one of the youngest to undergo this procedure at BCH.

Performing these lengthy, invasive procedures on children can be highly risky, and as parents, we wanted to gather data while keeping our baby safe. This is when an additional layer of planning is needed, including a well-thought-out behavioral plan that suits your child.

The SEEG procedure itself involves the precise placement of electrodes deep within the brain to record electrical activity from regions that are otherwise difficult to access using standard surface EEG. The complexity of the procedure demands a high level of expertise, both in planning and execution, from all your child’s care team, from the neurosurgeons to child-life specialists.

Following a 6+ hour surgery, 11 electrodes were implanted on the left side of Fiadh’s brain, after which she was transferred to the ICU for monitoring. For this stay, our behavioral plan included keeping Fiadh mildly sedated and in one position in the ICU bed. The stay was brutal, incredibly traumatic, and upsetting for both Fiadh and us. It was a week we wanted to forget, but we had to remind ourselves that we did it for her—to gather more information and try to stop the seizures.

Her team succeeded in locating a suspicious hotspot in the insular cortex. Two months later, they performed a laser ablation to disrupt the seizure network, giving Fiadh 6 days of freedom. Unfortunately, the seizures returned with a vengeance.

Seizure freedom was not on the table, but reducing the burden, letting her brain breath so she could continue to develop and be a happy kid, was our main goal.

One year, Two SEEGs

Our team was always candid with us. The seizure network was broad and complex, and a multi-stage surgical approach would be the best option for our baby girl. So, we continued to adjust medications, get more imaging and EEGs, and plan for another SEEG six months later.

We entered this SEEG with a completely different approach, opting for a different behavioral plan. Fiadh was in the EMU, fully alert and much more at “home.” The stay went smoothly; it was a complete 180 compared to 9 months prior.

Our team gathered the data and presented us with three palliative options, one of which was a frontal lobe disconnection to break up the network and reduce the seizure burden. They informed us that complete seizure freedom was likely never a realistic goal, but reducing the frequency was. Less would be better—fewer meds, fewer hospital visits.

We just wanted our little girl to be as happy and carefree as any other kid. It was a heavy decision, knowing it was a 50/50 chance that it would help in any way. Fiadh underwent a 10-hour brain surgery on November 22nd and has not had a seizure since.

“Tips” for a SEEG stay

For us, the greatest source of knowledge was experience—the experience of every team member, from our neurosurgeon to our nurses in the ICU and EMU. They all have your child’s best interests at heart, but remember, you know your child better than anyone. Just because something is typically done for most doesn’t mean it should be done for your baby.

• Medications
  For example, Fiadh doesn’t react well to benzodiazepines. During the first SEEG, we used a Valium bridge from surgery to the ICU, thinking it would help keep her calm, but it had the complete opposite effect. For the second SEEG, we opted for no sedation and no Valium bridge. Fiadh took her regular seizure medications by mouth, and it made for a much less stressful and smoother stay.
• Location
  Being in the ICU has its perks, especially with more nursing staff on hand and constant monitoring. However, being in the EMU also has its advantages: the epilepsy team is right on the floor, readily reachable, knows your child’s seizures, and it can be more comfortable for your child.
• Night-time Monitors/Watcher
  Hospitals are the worst places for sleep, but our kids need us to be rested. It’s helpful to ask about a monitor or bedside sitter for nighttime because your child needs to stay relatively still and in one place. Having a bedside monitor allows you to rest while ensuring your child is safe.

The SEEG doesn’t have to be daunting or traumatic—it can be a smooth, incredibly informative procedure. A key component is having open dialogues with your child’s team and discussing what’s best for both your child and you.

Without the two SEEGs, Fiadh would not be where she is now. Fiadh just celebrated one year seizure-free on November 23, 2024. She is a happy, lovable, and bubbly 4-year-old.

Pro-tip: prepare a list of questions for your team

• How long will the surgery take?
• Will my child be in the ICU or the EMU?
• How many electrodes will be placed, and where?
• What is the behavioral plan?
• What can we do to make my child as comfortable as possible?
• Will my child need sedation during the monitoring?
• Can my child’s medications be given via IV? If not, will we need a medication bridge if they cannot be administered by IV?
• How can I keep my child safe and still during the monitoring overnight? Will there be a bedside aide?
• Do we need safe restraints, or will this cause additional stress for my child?
• What kind of testing will be done, and how will this affect my child (e.g., cortical stimulation)?
• What does the recovery process look like after the procedure?
• How long will the stay be?
• How soon will the procedure be scheduled after the SEEG (e.g., will my child stay inpatient or go home until the data is analyzed)?