'Our New Normal.' Life-Changing Surgery Stops Young Boy's Seizures

Aaden Balderamos hops up and down, squealing with joy as the bubbles float into the air.

"Bubbles. Bubbles. Up. Up. Pop!"

The nurse taking Aaden's vitals before his doctor's appointment can't help but smile too. She's blowing the bubbles as she takes Aaden's blood pressure and weight at the Jane and John Justin Neurosciences Center at Cook Children’s.

It’s a routine visit for a little boy whose life has been entirely unpredictable until recently.

Stephanie Balderamos, Aaden's mom, smiles and soaks the moment in for all it's worth. Smiles didn't always come so quickly to Aaden or his mom. Aaden was born with tuberous sclerosis complex (TSC), a genetic disorder that causes benign or nonmalignant tumors to form in many different organs in the body.

"I had a mantra when we were adjusting to all of the lifestyle changes that come with being a parent to a child with special needs – This is our new ‘normal.’ The meaning behind that has changed so much for me after Aaden's surgery,” Stephanie said. “I know he still has TSC, and it's possible the seizures could come back, but he's not having them right now. That's a big change for us because Aaden's happy now. We're not used to that. We're used to Aaden waking up every day and having at least four or five seizures by 9 a.m. Now he can go play and be a happy little boy."

Living with TSC

Tuberous sclerosis affects approximately 50,000 people in the U.S. The brain, heart, kidneys, skin, lungs and eyes are some of the more critical locations 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.

M. Scott Perry, M.D., an epileptologist and medical director of Neurology and the Genetic Epilepsy Clinic at Cook Children's, began treating Aaden when he was only 4 days old.

Aaden's first seizure occurred when he was 4 months old. Stephanie grabbed her phone to record Aaden's seizure and sent the video to Dr. Perry.

Aaden's infantile spasms lasted about a month, and doctors controlled his seizures with medicine (vigabatrin). But a new battle began in February 2017 when Aaden developed focal onset seizures.

His seizures were frightening to watch. With some seizures, Aaden wouldn't speak. With others, he babbled incoherently. His lips and eyelids would sometimes turn blue. Other times, he would shake and convulse. Some seizures lasted as short as 10 seconds, while others would last for minutes at a time. One seizure lasted more than an hour and a half.

Aaden's eyes twitched, and sometimes he held his eyes and head because they hurt so bad. Following one scary incident, Aaden stopped breathing, and he had to be rushed by ambulance to Cook Children's.

Robotic Surgery: A Precise, Life-changing Operation

By this point, Aaden had tried numerous treatments from conventional medications to research trials. While each helped reduce his seizures, none got rid of them completely. The neurology team recommended epilepsy surgery would be an option. But first, there was work to be done.

The Epilepsy Monitoring Unit at Cook Children's gathered tons of data, including EEGs and multiple types of brain scans. The information showed numerous areas in Aaden's brain had the potential to cause his seizures. Still, the data began to point to one area as the primary cause.

The data captured from video EEG and brain scans painted a picture for Dr. Perry, Neurosurgeon David Donahue, M.D., and Hayden Head, M.D., a neuroradiologist. Each test characterized the seizures differently – the PET scan measured metabolism and energy production in the brain, while the SPECT scan measured blood flow and the EEG gathered electrical activity data. All contributed like colors on a canvas to paint the picture of where in Aaden's brain, his intractable seizures arose.

For Aaden, the seizures took place in the right hemisphere of his brain. The good news was motor and language functions are a distance away from where the seizures started, so they were unlikely to be at risk during surgery. The bad news was the pathways that control vision are located near the suspected region of seizure onset. This area has the most significant potential for concern for the doctors and his mother, Stephanie.

Dr. Perry and the team narrowed the search for Aaden's seizures to a single section of his brain. However, they still needed to be more precise – to locate the smallest area of brain possible causing his seizures and to avoid damage to critical visual pathways.

Dr. Donahue performed a stereoelectroencephalography on Aaden in November 2018. This minimally-invasive surgical procedure was used to help Dr. Perry identify more precisely where Aaden's seizures began. Dr. Donahue then placed the electrodes in specific, targeted brain areas using robot assistance and imaging in the operating room.

Dr. Perry recorded additional seizures and narrowed down the region of the brain responsible for Aaden's epilepsy. With the new areas identified, Dr. Donahue found it easier to resect, or remove, the location or locations causing the seizures during surgery on May 8, 2019.

The Freedom of Living without Seizures

On Nov. 11, 2019, Stephanie sits in a room at the Jane and John Justin Neurosciences Center, waiting to see Dr. Perry and Dr. Donahue for the second follow-up visit since the surgery.

Six months after the surgery and Aaden has not had one seizure.

"I'm so glad we had the surgery. Of course, everybody is going to be scared when you think of brain surgery. But it's the best decision we've ever made," Stephanie said. "He's been seizure-free ever since. Not one seizure since the surgery."

The Disney Channel is on, and Aaden, who will turn 4 on Dec. 13, doesn't seem to have a care in the world. Well, he does have one.

"Paw Patrol?"

Stephanie breaks the news that one of her little boy's favorite shows isn't on right now. One can't help but smile that this is Aaden's biggest issue while waiting to see a neurologist and neurosurgeon.

With Aaden doing so well, it means less time at Cook Children's. Before the surgery, Stephanie looked at the medical center as a second home.

"We were here all the time. We had so many different appointments, and it wasn't just Neurology. Sometimes we would have two appointments on the same day with other departments like Urology or Cardiology," she said. "It's almost weird now not being at Cook Children's all the time. We were here a lot. But that's something that's changed for us. We were here all the time, and now we don't have as many doctor's appointments. We get to do a lot of fun things now we couldn't before. Even though we love Cook Children's."

As Stephanie finishes her thought, the door knocks and in walks Dr. Perry. The visit is to see how Aaden's doing following the surgery and to talk about the eventual goal of taking him off one of his two remaining medications for seizures. The decision is quickly made after a discussion between Dr. Perry and Stephanie to continue both medicines for now. Things are going too well after surgery.

"There are still nerves there," Dr. Perry said. "Do you start taking away some medication right away? Yeah, you could. I would love to have him on less, but I don't want to mess up the good stuff we have going on right now. You know there's a lot of work involved. There's a lot of training. There's a lot of constant learning that goes into figuring out how to do the best we can to cure a child's epilepsy. It's what makes us glad we do what we do."

Next up is Dr. Donahue. Even after years of experience as a neurosurgeon, he marvels at the child standing in front of him.

"How's his scar looking? Looking good?" Then he takes a look at Aaden. "My Lord, that's amazing."

Dr. Donahue said there's a balance when operating on children with TSC. He wants to remove as much epileptogenic tissue as possible without damaging the child.

"You have to find the fine line between aggressivity and being sensible," Dr. Donahue said. "Looks like we hit the sweet spot with Aaden. The hardest thing is to find where the seizure focus is, but our epileptologists are good, and that's what they did here. They were the ones to find that spot. It makes me amazed at how strong these children are and how they can recover. Kids bounce back. They are so resilient. Of course, it makes me feel great inside to see how well he's doing and that what we did worked, but the main thing is the kids themselves and how strong and courageous they are."

Dr. Donahue talks to Stephanie for a few more minutes and tells her he will see her again in a few months. Then he's off to his next case.

The entire visit lasts less than 30 minutes. It's happily routine. So far from where they've come, but Stephanie says much work remains. Aaden remains in speech and occupational therapy. He speaks and has the maturity level of a 2-year-old right now.

Stephanie remains cautiously optimistic about Aaden's future. She knows that there's a chance Aaden could begin having seizures again someday.

But for now, Aaden and Stephanie are living in the now and enjoying every minute of it.

"When I read about side effects before the surgery, I read about behavioral changes,” Stephanie said. “The one that stuck out in my head was ‘bad behavior.’ But it was different. We can go to the store. We can go to Target now and before I wasn't able to go anywhere. We can go to birthday parties now. For me, going to Target for 30 minutes is a significant accomplishment for us. Now, it's just like things have calmed down. It's an amazing feeling to be able to let Aaden play independently without having to keep a constant eye on him anxiously waiting for a silent seizure."