By IOWA STEAD FAMILY CHILDREN’S HOSPITAL
IOWA CITY, Iowa — Enzo Thongsoum (Des Moines, Iowa) was a healthy toddler, but he started having unexplained seizures at 18 months old. Enzo was in his local hospital for more than three weeks. When his condition worsened at his local hospital, he was transferred by helicopter to University of Iowa Stead Family Children’s Hospital.
Pediatric neurology specialists quickly diagnosed Enzo with anti-NMDA receptor encephalitis, a disease newly identified in 2007, in which the immune system attacks the brain.
“It was the scariest thing ever to have your baby in your arms, having a seizure. I never felt so helpless,” recalls Enzo’s dad, Jack. At their local hospital, “They kept saying he had epilepsy, and we just knew that wasn’t it. To see your baby suffer like that, there’s no greater pain in the world.”
Once Enzo arrived at UI Stead Family Children’s Hospital, doctors had answers within minutes.
“We had a pediatric neurologist come in, Katherine Mathews, MD,” Enzo’s mom, Phanna, recalls. “She actually just looked at Enzo for about 10 minutes and told me that she thinks he has what’s called anti-NMDA receptor encephalitis. It was a pretty new illness, which was only identified in 2007, and he got diagnosed in 2012.”
“Anti-NMDA receptor encephalitis is super rare. I think Enzo was only the second case (at UI Stead Family Children’s Hospital),” adds Jack. “We’re so thankful for her and the hospital. Your immune system is attacking the brain, it scrambles your brain. Enzo was just a toddler at that time, just trying to put words together, so he couldn’t walk anymore, he couldn’t talk anymore.”
“Before Enzo got sick, he probably had a normal regular cold, like any other kid,” Phanna explains. “The doctors think his body thought it was still fighting something, a virus, but it had nothing to fight off. So, instead, it started attacking the receptors in his brain.”
Enzo’s care team soon came up with a treatment plan that included steroids and chemotherapy.
“As soon as Enzo got diagnosed and we knew what we were dealing with, we had a game plan, and we knew what kind of treatments to try,” Jack recalls. “So, it was a huge relief.”
“The recovery for this illness is a pretty long journey,” Phanna adds. “Normally for someone who gets this illness, their prognosis is about 80 to 90 percent that they’ll be back to normal within the first year. Within the first year, Enzo didn’t get back to normal. They thought he was going to be in his wheelchair for the rest of his life, but he has proved them wrong.”
One big improvement came in December 2016, when Enzo started walking.
“We were already three years into the illness,” Phanna says. “We did exercises where you tried to get him to stand, but we never saw anything that he was going to walk tomorrow. It just happened. Being able to see Enzo walk again was probably one of the best days of my life.”
In addition to physical therapy, Enzo receives speech therapy in the hope that he will regain his ability to speak.
“They treat the person, not the disease, so each person is different,” Jack says of the variety of specialists Enzo sees at UI Stead Family Children’s Hospital.
“We came back quite often, and the nurses just made us feel at home,” Phanna adds. “Everybody knew Enzo’s name when we walked in. They just made us feel really comfortable.”
Today, Enzo loves spending time outdoors and being with his family.
“Enzo has his own hashtag. It’s #EnzoTheFighter,” explains Jack. “Every picture we take, that’s the hashtag we throw on there because he just doesn’t stop. He teaches you how to persevere through horrible things. He’s amazing.”