Toddler’s Journey to a Seizure-Free Life
- Ella Grimes was diagnosed with Infantile Spasms in Sept. 2010 and continues to undergo treatment at the Epilepsy Center at Children’s.
- Ashley Grimes, Ella’s mom, and Ella spend time together before Ella’s appointment at Children’s in April 2013.
- Dr. Susan Arnold, medical director of the Pediatric Epilepsy Center, walks with Ella as part of her exam.
- Dr. Arnold and Ella touch their noses. This is one way Dr. Arnold tests Ella’s coordination.
Ella Grimes is an on-the-go toddler who loves playing with her sisters and often pretends she is a doctor, a role she knows all too well. The 4-year-old has been in and out of the hospital most of her life.
A seemingly healthy baby
“Ella was born healthy and was a very easy baby,” said Ashley Grimes, Ella’s mom.
So easy, in fact, that she rarely cried. But in January 2010 at 8 ½ months old, everything changed.
“She began throwing up and was not acting like herself at all,” Ashley said. “After a day of this, she was becoming increasingly lethargic and just wanted to be held. We knew something was wrong and called 911.”
Immediately the paramedics identified complex partial seizures and weakness on her right side, but they did not know the cause. At a local Dallas hospital, doctors discovered a large bleed in the front of the left side of her brain. An emergency surgery stopped the bleeding and showed the reason behind it – an abnormal connection of arteries and veins called an arteriovenous malformation or AVM.
The life or death situation left Ashley and her husband, Scott, in shock and without much time to comprehend the situation.
“Our world was turned upside down that day,” Ashley said. “We had no idea what an AVM was, that babies had strokes and the ups and downs of her recovery.”
Several more seizures after surgery led to an increase in Ella’s medication as the doctors thought the episodes were from the original bleed and trauma from surgery.
But the seizures did not stop there.
Eight months later Ella began staring off into space followed by a jerking motion.
“We knew it wasn’t something she should be doing and feared they were seizures,” Ashley said. “We called the neurologist and had an EEG done.”
Ella’s diagnosis – infantile spasms.
“I still remember the phone call from her neurologist,” Ashley said. “My heart sank as I tried to write down everything he said and our treatment options, but all I could think was, why is this happening to her? Hasn’t she been through enough already? After I hung up with the doctor, Scott and I did a little research on infantile spasms before I had to stop myself because everything I read made me cry and worry more. We realized we needed to stop worrying about the why and focus on how to get these under control.”
After trying multiple medications, a round of steroids and EEGs, nothing seemed to be permanently stopping Ella’s spasms. That’s when Ashley and Scott searched for answers.
“Her neurologist at the time was a good doctor, but we wanted something more to help Ella,” Ashley said.