The Beginning

Epilepsy: Trinity’s Story

As a Forever Father, I enjoy nothing more than living life alongside my children. If you stumbled on this page, you are probably wondering who is epileptic. This page will elaborately explain the details and early stages of detecting epilepsy regarding my youngest daughter, Trinity.

October 2018, I took my daughter Trinity (age 2) to get her first flu shot. Later in the month, her sleeping pattern was off. I thought but was skeptical she was having night terrors in her sleep. These night terrors I defined as episodes occurred more frequently and on a daily basis.

By November 2018, the frequency of irregular sleeping patterns continued. Her episodes consisted of uncontrollable contractions of the upper limbs, stiffening of the lower body, groaning sounds and periodic occasions of holding her breath. Enough was enough, prompting an emergency room visit and an admission for evaluation.

Visiting the Hospital

Hearing the Diagnosis

After the Thanksgiving holiday, my daughter was admitted to Norton Children’s Hospital for neurological observation. Norton’s confirmed my daughter’s episodes were what we suspected–she was having seizures. This diagnosis was confirmed on an overnight Electroencephalogram or EEG.

Early December 2018, Dr. Karia, a pediatric neurologist identified ash-leaf patches on Trinity’s skin once mistaken for birthmarks by her pediatrician. Blood work and the identification of these patches confirmed Tuberous Sclerosis Complex (TSC).

I’ll discuss below what ash-leaf spots are and also examine the type of seizures Trinity has to see if your loved one experiences the same.

Tuberous Sclerosis Complex (TSC)

A Genetic Disorder & Meds

TSC is a rare, multi-system genetic disease that can cause tumors or growths in the brain or other organs causing seizures to display as a result. Thankfully, Trinity has no identified growths and her daily medication using Trileptal has shown promising results in the effectiveness of limiting and preventing seizure activity.

Learn more about epilepsy from the Epilepsy Foundation by clicking here.

We are NOT affiliated with the Epilepsy Foundation.

My Advice & 2025 Follow Up

Time Will Tell

We are confident that this early prognosis allowed us to be proactive about Trinity’s future. From one optimistic parent to another, don’t let a diagnosis define who your child is and what they are capable of. Give your child every resource they need for developmental success to defy the odds and all the love in the world.

For those parents who are new or accustomed to these familiarly seeming scenarios, stay positive and remember the fight is not over! Support your child each day in every way. They depend on you for continued excellence and success.

As of 2023, Trinity has weaned off of and discontinued Trileptal, the seizure medication prescribed to her since age 2 in 2018. She does have a nasal rescue medication called Diazepam which we have never had to administer.

As of 2025, her neurologist is pleased with her current prognosis and will continue to offer MRI’s and EEG’s every two years as a precaution. While we are uncertain if seizures will reoccur, only time will tell.

Trinity is thriving, joyfully excelling in reading, writing, and math, outshining her classmates and embracing each day of school with enthusiasm and confidence.

She absolutely revels in every moment spent at gymnastics, her heart racing with excitement as she effortlessly flips through the air, whether it’s around the house or soaring high on a playground.

She has engaged in dance since the age of three and continues to demonstrate remarkable skill in soccer, consistently achieving goal-scoring success each season. As her father, mentor, and coach, I serve as her foremost supporter.