Forever grateful: Finding the best epilepsy doctors for my son

James, who had surgery for seizures, poses for his first day of third gradeWhen James arrived at 3 pounds, 15 ounces and 15 inches long, he stole my heart. He wrapped his tiny fingers around my own and I hoped he would never let go. He met all of his milestones, with the exception of being a little behind in his speech. We were about to put him in speech therapy when we learned he had a much bigger problem.

When James was 2-and-a-half years old, I put him down for a nap and within moments witnessed him having a grand mal seizure. I was terrified. We went to our local hospital in Syracuse, New York, where James was poked and prodded for a week. Finally, he was diagnosed with cortical dysplasia — a brain condition that can cause medically intractable epilepsy, or epilepsy that cannot be treated with medications. Cortical dysplasia happens during development, when the nerve cells in the brain don’t form properly. James was having so many seizures that the only option, the doctor said, was radical surgery that would remove half of his brain. The doctor said if this didn’t happen, I should take him home, love him, and plan to say goodbye.

Determined not to let go

I did take James home, but instead I searched the internet for the best doctors in the world to help him.  I found Dr. Alexander Rotenberg and Dr. Joseph Madsen of Boston Children’s Hospital. I didn’t care how far I had to go, I just wanted the best for James. I transferred his care to Boston Children’s.

Dr. Rotenberg and Dr. Madsen worked professionally, tirelessly and compassionately to make the best plan for James. Dr. Rotenberg medically stabilized James’ seizures for almost a year, which was difficult because they were always changing and becoming more pronounced. There were times that I would email him on a weekend about a breakthrough seizure and I would have a response and action plan sometimes within minutes. But every medicine was tried to no avail. The seizures wouldn’t stop.

James, who had surgery for epilepsy, poses in a chair on his lawn
James shortly before his surgery

We knew from the start that surgery was likely. Dr. Madsen and the team explained that they needed to disconnect the parts of James’ brain that were causing the seizures, but preserve as much healthy brain as possible. James had MRIs, CT scans and week-long video monitoring to pinpoint exactly where in his brain the seizure activity was coming from. Dr. Rotenberg used a noninvasive technique called transcranial magnetic stimulation to find out which parts of James’ brain were responsible for moving his limbs. All of this information would guide Dr. Madsen during the surgery.

The hardest, best decision of my life

In February 2014, I handed James over to Dr. Madsen for surgery. It was the hardest thing I have ever had to do. The 10-hour surgery never seemed to end.

James, in the ICU after epilepsy surgery, with his dad
James with his dad after surgery

After James’ surgery, he was like an infant again. He had to learn to pick up his own head, sit up and walk. He took his first step on his own on my birthday. It was the best gift ever! He had physical therapy, occupational therapy, speech therapy and a special education teacher who came to the house to aide in his recovery. They all worked hard, but James worked harder.

In the fall of 2015, when James started kindergarten, he was able to speak in only one- to two-word sentences. With additional one-on-one instruction, he is now thriving. He talks in full sentences and clearer thoughts. He is curious and inquisitive. While he struggles with processing and expressing what he knows sometimes, he seems to be able to take in the information. James is doing life at his own pace and overcoming his medical obstacles one day at a time. I teach him that he can do anything he decides to do in life, though he may have to do it a little differently than his peers.

James, who had surgery for epilepsy, holds a placard saying he's been seizure-free for four years

The future is wide open

Today I have an active 8-year-old who loves life, learning and playing with his friends.  He is compassionate, kind, loving, funny, creative and smart. Does he have challenges in life? Sure. Don’t we all? But I have never seen any kid work harder to overcome his challenges than James. He is my inspiration and my hero. Today I am not planning to say goodbye, but am planning for college. If you ask James where he is going to college, he will tell you Harvard. I think that is a great goal. I tell James to reach for the stars — wherever he lands is going to be the perfect place for him.

Thank you Dr. Madsen and Dr. Rotenberg for all that you have done for James. We hope to never need your services again, but if we do I know you will do your absolute best.

Learn more about the Epilepsy Center.