Advocate for Yourself or Loved One With Epilepsy

Our son Beaudin had a stroke at birth causing him to have a traumatic brain injury (TBI). He had seizures during his first few days of life and was on medication for six months. Things were better and he continued forward seizure-free. Then in September of 2022 at the age of 4, Beaudin woke up one morning unable to talk or even sit up, which was not normal for him. We rushed him to the children's hospital and immediately ruled out another stroke. Beaudin was admitted and after doing an EEG within 24 hours he was diagnosed with a rare form of epilepsy that was affecting him in his sleep. He was having multiple silent and not visible seizures while trying to sleep causing him to sleep deeply or move things into long-term memory. This started his epilepsy journey of countless EEGs, seizure medications, and scans. 

Beaudin was faced with many challenges after his epilepsy diagnosis. He struggled to sleep at night and could not even make it through the next day without falling asleep at preschool. He tried so many meds including steroids which made him gain weight and he was very irritable on them. Many nights were spent at a hospital and our weeks were filled with appointments and trying anything we could to keep the seizures at bay. The biggest challenge was that all of the seizures were silent, so we never had a good baseline for how many he was having unless he was hooked to an EEG. This made it incredibly hard to help him when we as parents did not know what was going on inside his body. 

After about 8 months things were getting worse and none of the treatments seemed to make a difference. Working with the Epilepsy Foundation of Nebraska, I advocated for more care for my son and was able to locate a team of doctors to help. In April of 2023, Beaudin’s epilepsy was deemed drug-resistant and the next step was surgery. We met with his new epileptologist and team and in May, he had his first surgery. They put an EEG directly on his brain to get better data and do mapping for a second surgery. Beaudin was the first kid to have this surgery at the hospital we were at as they were getting certified as a Level 4 Epilepsy Center. 

His healthcare team was amazing! After four days of data and one day of mapping, they were able to perform a second surgery and disconnect the part of his brain where the seizures were originating. This also happened to be the spot his stroke affected. It was a very nerve-racking time as the seizures originated in the motor control part of his brain. The surgery went well and within three days he was home. We noticed such improvements within days - so many skills that were hard for Beaudin to master just started happening. He has been seizure-free for over a year now and no longer has to take daily seizure medication.

The Epilepsy Foundation of Nebraska is near and dear to us and my husband and I now serve on their board. They helped us find our care team and did Seizure First Aid Certification training for Beaudin's preschool. I am grateful to have that training as a resource because I felt more comfortable sending my child to care knowing his teachers knew how to respond. 

Surgery was the hardest and best decision we ever made for Beaudin. We aim to encourage and support other people in similar situations. I urge you to continue to advocate for yourself or your loved one, and if you feel like there is more to learn, get a second opinion.