Twin brothers Alex and George share many things. They share their love for the martial arts. They both have achieved the level of black belt in tae kwon do. They also love to ski, both near their home in Wisconsin and on the significantly more challenging slopes of Colorado.
Alex and George also share their diagnoses of epilepsy.
The tale of Alex and George was told to me by their mother, Maureen, who talked with a combination of emotion and pride over the bluetooth phone in her car while she drove her slumbering teenage sons back from vacation in Michigan. Every so often, a mumbled “hhhmph” of assent or “harrumph” of question emanated from the teenagers in the back of the car.
Maureen started our conversation by making sure that I knew how far her boys had come despite the challenges that they had faced with epilepsy. “My mother socializes with a large group of women in the Michigan area and she is holding a fundraiser to raise awareness about epilepsy next week,” she said. “One of the goals of the fundraiser is to show the important and relevant realities of the disease and how it affects the whole family.
“On the invitation to the fundraiser, my mother and I wrote: Since their diagnoses 10 years ago, George and Alex have taken about as many medications that are available, have had a myriad of tests, George had intracranial EEG monitoring, and George had brain surgery.
Despite all that, they are active, funny, engaging teenagers.”
Maureen’s journey with epilepsy began on a Christmas ski trip in 2003 when 5 year old twins Alex and George were sitting outside having a snack in between runs down the hill. While sitting quietly in the afternoon sun, George started acting differently and stopped responding to external stimuli. By the time his parents realized something was wrong, he succumbed to a generalized seizure. The ski patrol office was right next to where George collapsed, so he was promptly put in an ambulance an taken to the local hospital, where a CT scan and all diagnostic studies were normal. George was discharged from the hospital the next day and he returned home with his family seemingly unscathed.
But George continued to have seizures. He established care with the Children’s Epilepsy program at Children’s Hospital of Phillidephia and was started on tegretol. When George’s family moved to the Milwaukee area, his care was transferred to the Children’s Hospital of Wisconsin, where his neurologist recommended an evaluation for possible resection of the focus of his seizures. George had surgery for placement of intracranial electrodes and then was monitored in the epilepsy monitoring unit at Children’s Hospital of Wisconsin. His seizures were found to originate from the left temporoparietal region of his brain, the same portion of the brain that houses, among many other things, the circuitry needed for speech and language.
“I’m a speech pathologist,” Maureen stated. “When Dr. Zupanc told me where George’s seizures were coming from, it was a low point in this journey. I knew that if they resected that region, he would never fully regain his language again.”
Instead of having a resection of a seizure focus, George had a vagus nerve stimulator (VNS) placed, which has been helpful to reduce the number of seizures. He still has approximately one to two seizures a week, despite taking three anti-epileptic drugs. George continues to ski in Snowmass with his family with the help of a program called Challenge Snowmass that pairs a skier with disabilities with a ski buddy. George clips into the chair lift and uses a climbing harness while skiing to keep him safe in case he would have a seizure while skiing. George has also achieved a black belt in tae kwon do and enjoys swimming with his family at the beach — though never without a life jacket.
When George and Alex were 7, in the midst of George’s evaluation for possible surgical treatment for his epilepsy, Alex began to complain of intermittent periods where he “couldn’t see.” The visual complaints were determined to be focal seizures and before long, Alex had his first generalized seizure. With both children undergoing treatment and evaluation for epilepsy, Maureen felt like she was being pushed to her limits.
Alex’s focal seizures didn’t always generalize, but they often did. He began having about one to two seizures a week, but his seizures didn’t seem to be progressing as quickly as George’s had. Because she was now struggling with recurrent seizures in two boys, Maureen decided to put both boys on the ketogenic diet when they were eight years old. “I was bound not to fail for lack of compliance,” she said, “so I measured every morsel of food for one year. The worst part of it was the daily grind and the limited repertoire of what we could eat.”
Maureen remembers Alex’s last seizure like it was yesterday. “I took Alex to Michigan in December for a holiday music performance and he had last seizure in the lobby of the Interlochen Music School Auditorium. After that, we were able to sit down and enjoy the performance.” Not long after that, Alex stopped the ketogenic diet and was switched to Depakote. Alex has been on the same dose of Depakote for the past seven years and has not had a seizure since. His EEG his still active, but his clinical seizures have stopped.
Maureen has realized that raising two boys with epilepsy has not only changed her perspective about seizures, but molded her view of life in general. For better or for worse, she’s gotten used to watching her sons’ seizures and supporting them through them. “I’ve seen George have 95% of his seizures. After the initial panic is over, I’m the one consoling everyone else. I’ve seen it before and I’m used to it. George had a seizure on the first day of middle school and the case manager was a wreck. I was the one that had to calm her down.”
And having Epilepsy as an additional family member has also given Maureen and her family a chance to appreciate the simple things and celebrate the small successes. She reflected, “It’s pretty easy to get bogged down in the worry about the future. Every parent gets worried about their kids. It’s 1000 times worse when you have a child with a medical problem or some sort of special needs. But, you need to look at every day and the success of each day and see that they accumulate and trust they’ll find their way in the world.”
When I asked Maureen how she’s managed with a life of uncertainty, she replied, “You have to take every day and prepare for the worst, and hope for the best. It’s a balance between worrying about what’s going to happen and being thankful for every good day that we have.”