"Carpe diem, seize the day boys. Make your life extraordinary."
Dead Poet's Society
Shake It Off
Anthony's fight against epilepsy began in November 2015, one year and two months after his brain surgery. Our first report to the doctor's office didn't bring much concern based on what we described. Anthony would stare into space, unable to respond to us, as if he were frozen for a moment in time. Two trips by ambulance in February and April of 2016 brought us the same response, "it's nothing. Don't worry. Shake it off."
In May of 2016, Anthony suffered a grand mal seizure that lasted for 45 minutes. It was uncertain whether what he experienced was a single seizure or a cluster of multiple seizures. He was unconscious when he arrived at Yale New Haven Children's Hospital. Over the next three days in the Neurology Unit, Anthony experienced Todd's Paralysis, a temporary paralysis that can occur after a grand mal seizure. His diagnosis was official and his new course of treatment was now to treat this active epilepsy.
Seized and Confused
Over 400,000 children are living with Epilepsy. It is a serious, concering, and unpredictable disease. For most caregivers, the most difficult part of dealing with Epilepsy is that you never know when it will strike. For Anthony, Epilepsy means that he currently needs to take two medications daily. He also never goes anywhere without his emergency medication. At three years old, Epilepsy can be confusing. Heck! It can be confusing at any age. Recent efforts to build Epilepsy Awareness are so important to help those living with this disease.
Without the right answers for Anthony's Epilepsy treatment, his family was frustrated and scared yet determined to find an answer. Anthony now receives his treatment for Epilepsy at Boston Children's Hospital under the care of Dr. Ullrich. Dr. Ullrich currently has Anthony on a combination of medications that helps to control his seizures and reduce his risk of more serious health concerns.
Epilepsy in childhood requires constant monitoring to ensure children don't experience breakthrough seizures during their growth. At Anthony's age, this means lots of tests to see what's going on inside of his brain. Since the brain is so complex, it's difficult to predict seizures. You can, however, predict whether a child has more risks stacked up against them that make them susceptible to having a seizure. It's like catching a cold with a weakened immune system. Certain factors, like lack of sleep, too much sugar, and other illness, lower Anthony's threshold for seizures.
While the tests aren't painful, they can be scary for a three-year-old. Anthony is a true super hero. He believes that his EEG tests can capture his super hero powers and share them with other children. This has been a blessing in keeping him calm, cooperative, and happy.
"Awareness is like the sun. When it shines on things, they are transformed."
~Thich Nhat Hanh
For more information on epilepsy, or to find out ways you can help raise awareness, visit the following organizations.
The Connecticut Epilepsy Advocate
...Progress Through Awareness
Improving the lives of everyone affected by epilepsy.
BCH Epilepsy Center
The first comprehensive pediatric epilepsy treatment unit.
Leading the fight to overcome the challenges of living with epilepsy.