Mother says son had daily seizures; a brain implant changed his life

• Liz Bronson’s son, Teddy, has Lennox-Gastaut syndrome, a severe form of epilepsy.
• Teddy was the youngest person in the country to receive a brain implant to help.
• At the age of 6 he can walk and talk for the first time.

This as told essay is based on a conversation with Liz Bronson. It has been edited for length and clarity.

My six-year-old son Teddy recently said his own name for the first time. When you are pregnant and choose a nameImagine all the ways your child will use it, how they will introduce themselves to friends and make social connections. For a long time after Teddy was born, I didn’t know if he would ever use his name, so hearing him speak was life-changing.

Even though he is my first, I knew something was wrong soon after he was born. I am a nurse in the neonatal intensive care unit Children’s Nebraska, the children’s hospital near our home in Omaha, so I knew about babies. Teddy wasn’t smiling at us or reaching for objects, but initially his doctors weren’t concerned that he wasn’t meeting milestones.

Around his first birthday, his doctor referred us to a neurologist. While we were waiting for the appointment, he had his first seizure – an absolutely terrifying event that landed us in the emergency room.

When we finally got to the specialist, Teddy underwent a 23-hour electroencephalogram (EEG), a test that detects electrical activity in the brain and can help diagnose epilepsy. The doctor saw the results and said, “His brain is very busy.” He didn’t mean well. It was as if the doctor could tell that his symptoms were about to really start.

We tried starting medications early, but nothing worked

Teddy was diagnosed with Lennox-Gastaut syndrome, a severe form of epilepsy. He was given medication, but his attacks only became more intense and frequent. Medicines didn’t help much. From the time he was about a year and a half old until he was 3, he had more seizures than we could count every day.

Every time he fell asleep or woke up, he would have a series of seizures. His head would hang and his body would fall forward. In most cases this would have been a reason to go to the ER, but if we had gone to the hospital every time Teddy had a seizure, we would have lived there.

Instead, we worked closely with our doctors at Children’s Nebraska, a… epilepsy center level 4, the highest designation available. We also consulted with epilepsy doctors across the country. We tried so many medications but none worked. We continually had Teddy on new medications or tapered off.

Looking back, we were in a fight-or-flight response. But as Teddy’s parents, we also learned to listen to our intuition.

The doctors said we had to act quickly

When Teddy was three, I listened to a podcast that a doctor was talking about surgical treatment of epilepsy. Despite the fact that Teddy did not respond to medications, we had never been offered surgical options, which are considered a last resort.

I contacted the doctor I heard speak on the podcast and then another specialist. Both agreed that a surgical implant could help. It wouldn’t stop his attacks completely, but it could greatly reduce them. That meant his brain would have the chance to grow and develop, just like other preschoolers.

One of the doctors said something that really resonated with me: “You have a child whose brain is on fire. My recommendation is to act quickly.”

I knew if we didn’t do something, I was afraid Teddy would die

I knew the doctor was right. Yet the treatment we were considering was called a brain implant responsive neurostimulation (RNS)was only approved for adults.

Being a nurse practitioner, I understand that medications are often used off-label, that is, not in the manner for which they were formally approved. I use off-label medications all the time in the NICU, and they help my patients. So I felt somewhat comfortable using the RNS treatment off-label, as recommended by the doctors.

Even more important was my mother’s intuition. I just knew that if we didn’t do something drastic to help Teddy, he would die. I had seen other families whose children had died, and I feared that this was the path we were on, even though the doctors didn’t explicitly say so. My husband and I decided to try the surgery. Years later, people still can’t believe we took that risk, but we felt that not taking it would have meant giving up Teddy, and there was no way I could give up my son.

Teddy is thriving and he has changed the way I approach my work

The process did not go smoothly. Teddy’s first surgery took place in Los Angeles. When his incision became infected, doctors had to remove a large portion of the implant. He was later reimplanted at Children’s Nebraska. At just three years old, he was the youngest child in the country to have an RNS implant.

It’s been two years since Teddy had his second implant surgery, and the results were amazing. Before the surgery, his kindergarten teacher had to give him rescue medication three times a week to stop the seizures. This year he only had one school seizure.

Teddy is in kindergarten and doing well. He uses a walker to get around school and recently said “Hello” to his teacher, who nearly fell out of his chair in surprise. The most important thing is that he has a bond with his fellow students. Just this week, a neighbor from his class brought over birthday cupcakes to share with him.

Raising Teddy has changed the way I talk to NICU families facing serious medical diagnoses. I used to focus on whether children could perform certain activities in daily life. Now I understand that families simply love their children. Disability is not a negative word. These children are wonderful, vibrant members of our families and society, and we are so lucky to have them.