Nikki’s Story

Hi, my name is Nikki Perry. I am a mother, a wife, a caretaker, and an advocate. I am a resident of Lincoln, Nebraska and one of my goals in life is to advocate for the Nebraska Epilepsy Foundation on behalf of my 12 year old son Max Perry who lives with Epilepsy and Autism.

I have involuntarily been immersed in the Epilepsy world for the last 10 years. Max had his first seizure at the age of 18 months when he spiked a fever during an ear infection. He was shaking uncontrollably and turned bluish. After panicking and calling 911, he was taken to the ED at the local hospital where he had a work up, a 30-minute EEG, and we were told he was fine and not to worry about it. As a mother, who could not get that terrifying image of his seizure out of my head, I did nothing else but worry.
Max had 2 more febrile seizures over the course of the next 2 years, but every EEG read normal, and every doctor we talked to said he would be fine and might grow out of it. I was not convinced and worried every minute of the day and night when the next seizure would strike.
In May 2013 at the age of 4 on one particular day Max slept in later than usual and seemed extra tired that morning. He had an episode where he had a weird look on his face and started staring, got splotchy, and turned pale. I took him to his Pediatrician where no abnormalities were found and we were sent home. Throughout the day he had 10 more of these episodes. I was deeply concerned and knew something wasn’t right. My mother intuition said to take him to Omaha Children’s ED, in a bigger city about an hour from our home. It was there, after several nights of being admitted that Max was finally diagnosed with Seizure Disorder.

No one warned us how difficult it would be to find the right medication and manage the side effects of these powerful brain medications. He has tried 12 different seizure medications and more behavior medications than I can count. Max has extreme difficulty tolerating the horrific side effects of seizure and behavior medications. Initially his behavior changed. He would become angry and aggressive, emotional, impulsive. He would hit himself and bite himself and others. His taste and smell changed, and he was oversensitive to light and sounds, which had never been the case before. His social skills plummeted, and he was kicked out of 2 daycares within a month. My husband and I were losing our amazing, funny, creative little boy.

We decided we would do Anything and Everything to try and eliminate Max’s seizures. We made the gut wrenching decision to try brain surgery. Max had his first brain surgery at UNMC in Omaha, NE in June 2014. The goal was to remove the seizure focus, stop the seizures forever, get off the debilitating seizure medications, and move forward with our lives. The surgery was unsuccessful and Max began having more seizures than before the surgery. His behavior became even worse, he was having seizures during the night, and could barely function physically and emotionally.

My husband and I decided that we needed a second opinion and so we were referred to Dr. Orrin Devinsky at NYU Langone Comprehensive Epilepsy Center in New York. With months of paperwork and planning and by the grace of god, we made it to New York where Max had his second surgery (1st grade) in hopes to gain seizure control to eliminate his seizures. Max’s surgery went well; however, it didn’t stop his seizures entirely. It was becoming harder and harder for me to work fulltime and help Max as well. Because post surgery, Max’s cognition decreased along with his compliance with behaviors I was forced to resign from my successful pharmaceutical sales career of 14 years and train on implementing 24 hour intensive ABA therapy.

As of today, Max has seizures approximately every 10-35 days. We are in constant correspondence with his Epilepsy and Autism Team. It takes constant monitoring, tracking, communication, research, and paperwork in order to manage his Epilepsy and behaviors.
Max has taught me a lot. I have learned more about Epilepsy, Autism, and the brain than I care to know. Taking care of and advocating for someone I love who is living with Epilepsy is my passion. Being an Exercise Science major and having attended law school, I’ve always wanted to advocate for children. At first, I didn’t know how I was going to do it. My first opportunity came in 2015 when I spoke to the Nebraska Legislature and shared Max’s story in support of cannabidiol (CBD) use for medical purposes. I felt I needed to help bring this to Nebraska because families were moving out just to get access to CBD that could help their child.

I originally reached out to the Nebraska Epilepsy Foundation to connect with other families going through the same situations we were. I wanted to network and learn as much about epilepsy as I could. The website had so much great information; webinars about topics I wanted to learn about, fundraising walks and activities I could participate in, and a kids crew network that displayed other children with epilepsy, their stories, activities, and tools to teach classmates about epilepsy. Through these webinars I was able to connect with the Nebraska Epilepsy Foundation and become a Epilepsy Awareness Ambassador Champion and advocate to help change policy on a state and federal level.

Earlier this year, the Nebraska Epilepsy Foundation helped me advocate for Legislative Bill 337, which was signed into law by Governor Pete Ricketts on March 31, 2021. The bill opposes step therapy, a health insurance practice known as “fail first” that restricts access to life-saving medications. For me, this bill is particularly important because of my family’s own experience with step therapy. Max has tried as many as 12 different medications before we found the right cocktail that stabilize his seizures and does not cause him unbearable side effects. And, as he grows the combination will change as his body becomes use to the medications.

The Nebraska Epilepsy Foundation also helped me contact my elected officials in support of LB 639 Seizure Safe Schools legislation. This bill was signed in to law by Governor Ricketts in May 2021, ensuring school personnel are trained annually beginning in the 2022-2023 school year to recognize and safely respond to seizure activity.

As a caregiver, you get to a point in the journey where you embrace the diagnosis and just hang on to your child’s strengths to help grow all those strengths. My husband and I are now a well-oiled machine. We work through the negatives, relish on the positives, and do what we can to help Max and other families. I found this to be my passion.