Our Epilepsy Story

Our journey began in April 2021 when Lorelai was taken by ambulance to the hospital after suffering from a seizure. Lorelai was only 6 years old at the time. The doctor said she had a Febrile seizure along with strep throat. They said that this was common and not to worry; most kids will grow out of them. I wasn't happy and kept asking questions and doing research for myself. Lorelai went on to have Absence and Febrile seizures. In February 2022, my husband saw Lorelai have a Focal seizure. The next day, we saw our family doctor. He ordered her first EEG to be done at our local hospital. The EEG results came back abnormal, pushing me to talk to a family friend, who is a nurse. She has first-hand experiences with seizures. She suggested we get a 2nd opinion, and recommended Children’s Hospital and a doctor that they had seen for their daughter. With a referral, Lorelai was able to see a Pediatric Neurologist at Children’s Hospital. That Neurologist read Lorelai’s EEG results and told us Lorelai had Generalized Epilepsy. The doctor started Lorelai on Lamotrigine 2 times a day. This seemed to help for a bit. Since then, her seizures have become more nocturnal. Lorelai has had EEG testing, PET scans, MRI’s and a MEG scan done. We also tried Genetic testing to see where this came from. After all that testing, and also discovering some family history, it was determined that Lorelai’s Epilepsy was genetic. After another 48 hour EEG, Lorelai was diagnosed with Focal and Generalized Epilepsy. We were referred to a Epileptologist. She changed some of Lorelai’s medications to help with both types of seizures. We have also tried the Modified Atkins diet to help reduced seizure activity. This summer, Lorelai had a 6 day EEG to see if they could find out where her Focal seizures were coming from. We didn't get the answer for that question, but we are hopeful that we will get the answers soon. Today we just keep doing what we need to do to find the best care and treatment for our child. Lorelai will keep taking the medication that has been prescribed to her and do some of her diet. We keep going, researching, learning, and advocating for Epilepsy awareness.

Living with epilepsy has been a journey filled with both challenges and triumphs. From the first unexpected seizure, to learning how to manage and adapt, our story is one of resilience, hope, and unwavering support.

At the beginning, the uncertainty was overwhelming. We didn’t just face medical appointments and treatments; we confronted fears about the future and moments of helplessness. But through each step, our community – family, friends, and healthcare providers – became our strongest allies.

Epilepsy taught us the importance of patience and understanding. We learned to celebrate small victories: a seizure-free day, a new medication that works, or simply a day lived without fear. More than that, it has brought us closer as a family, reminding us that support and love are the most powerful medicines of all.

Sharing our story is a way to raise awareness and offer encouragement to others walking a similar path. If you or someone you love is living with epilepsy, remember: you’re not alone. There is strength in every struggle, and together, we can face anything.