Inspiring Parents to Never Give Up in the Face of Epilepsy

When our son William was just 3 weeks old, he started making movements that resembled a startle reflex. I took a video to his pediatrician, who dismissed it as an advanced startle reflex. But when the movements persisted even without any trigger, I did my own research and found seizures as a possible cause. Despite expressing my concerns again, his pediatrician said it was just "first-time mom anxiety." However, as the movements increased to 50+ a day, my mom and sister agreed they didn’t look normal, so my husband and I took him to the ER for a second opinion.

The ER doctor, upon viewing the video, immediately disagreed with the pediatrician's assessment, admitting us to the hospital and hooking William up to an EEG. Within hours, the neurologist diagnosed him with infantile spasms at just 6 weeks old. We had never heard of this condition, and neither of us knew much about epilepsy. He started on oral steroids, which reduced his seizures from over 50 a day to about 20, but steroids come with significant side effects and can only be used for a maximum of six weeks.

By 4 months old, William was also diagnosed with myoclonic seizures. We ran numerous tests, including genetic tests, MRIs, PET scans, and even a lumbar puncture, but no clear cause was found. Our neurologist told us that we had done all the testing possible and that the only option left was to manage his seizures with medication. However, we sought a second opinion at another hospital, where a more advanced MRI revealed the cause: cortical dysplasia. After further testing and review by a medical board, William was approved for brain surgery to address his epilepsy.

On October 28, 2022, brain surgery was performed to remove the area of William's brain affected by cortical dysplasia, and it stopped his seizures. William was just over a year old at the time. Today, thanks to the incredible care he received and the grace of God, William is over two years seizure-free and has graduated from all his therapies. At the time of surgery, he had tried seven different seizure medications and was on four medications twice a day. Now, he’s down to just one, which the doctors hope to wean him off within the next year. He truly is our little warrior miracle.

Trust your instincts and always get a second opinion. When I first expressed concern, my son's pediatrician dismissed it as new-mom anxiety, but I trusted my gut and got a second opinion. That second opinion led to us discovering William's seizures and ultimately curing them through brain surgery. We were also told by one hospital that there was nothing more they could do but manage his seizures with medication. A second opinion from another hospital revealed the cause, and surgery gave him a chance at a normal life. 

I’ve participated in several craft fairs, setting up an Infantile Spasms Awareness booth. I’ve purchased flyers, pamphlets, bracelets, stickers, and other materials to distribute. It’s been a rewarding experience, as I’ve had the opportunity to share my son’s story with many people and provide valuable resources to those in need.

The uncertainty of not knowing what the future holds for your child is unbearable. Always pray, trust in hope, and never give up. I hope our son’s story inspires other parents never to stop fighting for their children and to remember that there is always hope.