From US News
By the time Mareena Flores was 4, she was having up to 20 seizures a night and more during the day.
By Deena Flores
I have my sights set on a big party next spring for my daughter, Mareena. Her birthday, you might ask? In many ways it’s a re-birthday: a celebration of Mareena living without seizures longer than she endured them. It has been a long, difficult journey to reach this milestone, one that at times seemed impossible. But with deep love, persistence and a tremendously experienced physician and health-care team, we have had nearly five seizure-free years, and our lives are more normal than ever before.
Mareena was just 10 months old when she had her first seizure. After a normal birth and infancy, her eyes rolled back in her head one day. A few days later, it happened again, and this time her whole body went limp. Because Mareena was otherwise developing normally, her pediatrician at the time said it was a fluke and that she’d grow out of it.
But in spite of specialized diets and later, several anti-seizure medications, Mareena’s seizures became more frequent and severe as she grew older. Mareena went into staring spells; she would convulse. Her seizures were always associated with sleep, mostly at night or before, during or after a nap. By the time Mareena was 4, she was having up to 20 seizures a night and more during the day. My husband and I took turns sleeping in her bedroom. I kept a journal detailing how long and how often she had seizures, desperately hoping to identify a pattern.
The seizures changed the whole family dynamic. We didn’t go anywhere. We wouldn’t leave Mareena with anyone for fear a seizure would happen while we were away. It was a deep, dark time for us; death-defying seizures continued at a frightening pace, yet medical consensus was that Mareena would grow out of them. Even after multiple hospital stays at several different hospitals, the doctors indicated that because she continued to hit every developmental milestone, the seizures would pass and there was nothing more that could be done.
One morning, Mareena had a seizure and fell from her chair, hitting her head hard on the tile floor. That was the final straw. Through my husband’s contacts, we found the Epilepsy Support Network of Orange County, which led us to Children’s Hospital of Orange County Neuroscience Institute. There, we met with Dr. Mary Zupanc, a renowned epileptologist in the comprehensive epilepsy program.
At our first appointment, I brought a thick binder of test results, pictures, videos and my journal. That first visit lasted more than four hours and was really an eye opener. Dr. Zupanc told us that Mareena’s medication wasn’t working, and because epilepsy is a progressive disease, it was critical that we find a new solution quickly.
Mareena began undergoing extensive testing, including long-term video electroencephalogram monitoring to determine seizure type and frequency. During that time, Dr. Zupanc first broached the subject of surgical intervention to help Mareena. The idea of brain surgery was scary, but at the same time, it was a relief because it presented a path forward. We had spent years trying to convince doctors that something was seriously wrong. We were deathly afraid of surgery, but we were even more fearful of the progressively worsening seizures and losing Mareena altogether.
We began the process for surgical intervention, including an MRI scan of the brain to look for subtle structural changes in the brain and a PET scan, which looked at glucose metabolism in the brain. Mareena also had extensive neuro-psych testing and weekly blood testing. A team of physicians reviewed Mareena’s case and agreed she should have epilepsy surgery. However, in order to identify the exact seizure focus, invasive EEG monitoring was required. This meant electrodes had to be placed directly on the surface of the brain. This was also a frightening experience for us, but we soldiered on. Over a series of days, Dr. Zupanc and the other epilepsy specialists determined that the seizures were coming from the left temporal lobe of Mareena’s brain. Once confirmed, the surgeons removed that portion of the brain.
The result? Mareena has been seizure-free ever since. Our little walking miracle still takes one low-dose antiepileptic medication, but Mareena’s doctor visits have been reduced significantly. She no longer requires bi-annual video EEG monitoring or other studies. To say Dr. Zupanc saved Mareena’s life would be an understatement.
Mareena is now an active third-grade student passionate about school, cheer and dance, and she performs at grade level. The years of seizure damage left her with a slight audio processing delay. She currently has a full-time aide and speech therapist; we expect that assistance to taper down in the near future.
As a family, we have healed as well. Mareena does not remember life before the surgery, so we remind her of her early childhood through conversations and videos. What’s more, we purposefully make new memories together every day by doing ordinary things that other families may take for granted, like family vacations and planning holiday celebrations. We can finally relax and let family members watch the kids, so my husband and I can have quality time as a couple. It’s no longer scary to enjoy an evening out. We’re enjoying life to the fullest.
One of the most important lessons we’ve learned through this journey is to never give up. As Mareena’s parents, we knew instinctively there was something more to be done for these seizures; each doctor’s appointment and each hospital we visited brought us closer to the Mareena we know today. Every year since Mareena’s surgery, we have gone back to CHOC Children’s to visit the doctors and nurses who saved her life. Next May, as we make our annual trip, we plan to bring balloons, toys, cake and more to celebrate the fifth anniversary of Mareena’s re-birth and show appreciation for the wonderful team at CHOC Children’s that has become our extended family.