Evan's Story

My son Evan is a charming, happy 5-year-old. To look at him or talk to him, you’d never know he had brain surgery 18 months ago.

My husband Rob and I first noticed unusual twitching of Evan’s left side when he was 4 weeks old. An MRI showed a single focal brain abnormality diagnosed as “cortical dysplasia” where neurons in one part of the brain don’t migrate to the proper formation in utero. Seeing a mass on our baby’s MRI was frightening. We hoped it wouldn’t grow.

For the first year, Evan responded to medications. He had seizures roughly every three months—attributed to growth spurts—which stopped when his dosages were increased. We were relatively relaxed and complacent because Evan’s seizures were a subtle, rhythmic twitching of his left arm and leg lasting up to 30 seconds.

Tough news
When Evan was 2, tests revealed two additional tumors, or tubers, confirming he had Tuberous Sclerosis Complex (TSC). This genetic condition causes benign tumors in the brain, eyes, kidneys, skin, lungs or heart and is associated with epilepsy and developmental delays. Luckily, Evan had no significant developmental delays, but he had weakness on his left side. He walked later than his sister, Aria. People thought he was 6 months younger than he was. Doctors discussed the need for brain surgery.

By 3 ½, Evan’s seizures were longer and more frequent, although they remained simple partial seizures. He could tell us he was having one while it was happening and recall it later. He seemed to get an aura and learned to keep himself safe during a seizure. He’d sit down if he had time, or hold onto a chair or table as his left side shook.

We tried multiple antiepileptic medications but nothing gave him good control. He even experienced more seizures on one medication due to a toxic reaction.

Another gave him insomnia while yet another left him in a daze. The biggest side-effect was aggression—he once bit a stranger at the airport!

Seizures affected the family enormously. Our eyes never left Evan. Aria, who’s 2 years older, would sometimes see a seizure before we would. She’d run to get her watch, while counting the seconds out loud to time it, following our example. You feel a strange mix of pride and heartbreak to see your 5-year-old act as a caregiver.

A terrifying decision
When we’d first heard Evan, then 2, was a candidate for brain surgery, we agonized over how we could make the decision for another person to undergo brain surgery— especially when that person was too young to give his own opinion.

But by summer 2007, Evan was having 50 to 75 additional seizures each month, lasting up to two minutes— and we asked his neurologist, Dr. LaJoie at New York University Hospital, the time frame for surgery. Her reply made our heads spin: “We’re ready when you are.”

By September, the choice we feared seemed to make itself. I scheduled the surgery—and wanted to throw up. Evan would have three tubers removed, one very close to the motor strip. He risked a permanent loss of movement and more significant weakness in his left leg, and would maybe never be able to use his left hand. There was no guarantee surgery would stop the seizures, but his neurosurgeon, Dr. Weiner, believed there was an 80 percent chance they’d stop or decrease significantly.

From the moment the date was set, we faced it with optimism. For Evan, then 4, the simple explanation that Dr. Weiner was going to take his seizures away was enough.

Evan’s miracle
In November 2007, Evan had three surgeries over 3 weeks to remove the benign brain lesions caused by TSC. Afterwards, Evan went 3 weeks smiling only a handful of times—he was either in pain, tired or missing his sister. The steroids to reduce swelling left him ravenously hungry and easily agitated. Still, there was plenty to be thankful for.

After each surgery, Dr. Weiner came into Intensive Care with a team of doctors to check Evan’s reflexes and make sure he could still move everything. We’d cheer when Evan responded. After the final surgery, something amazing happened: Evan curled his toes with a greater range of motion than before. The surgery had actually caused a physical improvement!

Leaving the hospital, Evan was exhausted after six wobbly steps holding our hands. But each week he reached a new milestone—walking; standing from a seated position; using stairs; and finally running, jumping, riding a bike and even rock-climbing 10 months after brain surgery!

Seizure tracker
Back when Evan’s seizures were increasing monthly, peaking at over 350 seizures in September 2007, the page the doctor gave us to record them on became a jumble of numbers and colored codes to decipher. We looked for an online tool to help us log seizures, but couldn’t find anything.

We decided to try developing a better system to track seizures and to monitor the effectiveness of each medication.

Rob had a little background in developing personal Web sites—and the tenacity and drive to teach himself what he needed to know to create SeizureTracker.com. For most of 2007, he worked every evening after the children were in bed. When it was finished we started logging all Evan’s seizures onto it.

I couldn’t help thinking this was Rob’s way of finding something positive to direct his energy towards since he couldn’t stop Evan’s seizures. My biggest role was quality assurance testing. We went from a paper logbook—a jumble of notes and highlighted codes—to a concise report the doctor could look at and quickly understand. It streamlined the first 15 minutes of our appointment and helped foster an open dialogue with our doctor.

Rob decided not to charge anyone to use SeizureTracker.com. Making it available to other families just felt right. We didn’t want to add to the pile of medical expenses that we know come with epilepsy.

We launched SeizureTracker.com in November 2007— the month Evan had surgery. It started with a post to a message board for Tuberous Sclerosis Alliance [U.S. support organization for TSC] and that night people began using the tool. We still get e-mails every month and have incorporated additional features thanks to

specific requests. Currently almost 2,000 people use SeizureTracker.com. Our first users were in America but now they’re everywhere: from Australia to South Africa, Chile to Qatar.

New life for Evan
Evan is doing extremely well. He’s on one medication and is virtually seizure-free. We saw one seizure on January 5, 2009. He’d been growing so we increased the medication and haven’t seen another.

We’ve seen Evan’s personality shine since surgery. Before, the constant seizures would wear him out but now he has more energy and causes more mischief—like a five-year-old boy should! One of the best sounds in our house is our kids laughing.

Evan will always have TSC since there’s no cure, so we treat the symptoms as they arise and hope for the best. We’re monitoring a small tumor on his kidney and he receives weekly physical therapy and occupational therapy. He starts kindergarten next year and we’ll participate in seizure awareness training with his teachers. We sometimes worry how this experience will affect not only Evan, but Aria. So far they both seem to be taking everything in their stride. Evan charms his nurses and doctors, and Aria asks tough questions. In moments of weakness we only need to look at them to revive our strength. We don’t know what’s around the next corner but we’ll figure it out when we get there.

Article reprinted with permission from Epilepsy Action Australia—Epilepsy 360° June 2009 edition.