On Easter Sunday in April 2014, out of the blue, Mikayla Williams had a seizure – a dramatic occurrence for an otherwise healthy 12-year-old girl. A CT scan and blood tests done at Children’s Memorial Hermann Hospital produced inconclusive results, and Mikayla was sent home with an anti-seizure medication. Exactly one week later, she suffered a second seizure.
“After that, things went downhill for Mikayla,” says her mother, Velma Williams. “Her speech became slurred, and she began having panic episodes.”
Pediatric neurologist Jeremy Lankford, MD, admitted her to Children’s Memorial Hermann Hospital, where she was diagnosed with anti-NMDA receptor encephalitis, a disease that occurs when antibodies produced by the body’s own immune system attack NMDA receptors in the brain. NMDA receptors – proteins that control electrical impulses in the brain – are critical for judgment, perception of reality, memory and the control of autonomic functions, including breathing and swallowing. Symptoms are wide ranging and may include seizures, sleep disorders, loss of consciousness, speech dysfunction, cognitive and behavioral disturbances, movement disorders, and erratic breathing, heartbeat and blood pressure.
Mikayla remained hospitalized for the next four months, the first six weeks of which she spent on a ventilator in the intensive care unit. “Her case was so severe that we didn’t know what kind of outcome to expect,” her mother says. “She couldn’t walk, talk or do anything for herself.”
After treatment with medications that reduced the levels of antibodies in her blood and cerebrospinal fluid, Mikayla began what would be a long recovery. In September 2014, she was admitted to Shriners Hospital for Children-Houston for inpatient therapy. Seven weeks later, she was discharged to home and began outpatient therapy in the Return-to-School Program at TIRR Memorial Hermann Adult and Pediatric Outpatient Rehabilitation at the Kirby Glen Center.
“The therapists at Shriners were good,” Velma Williams says. “Mikayla started eating before she came home, and when she got to TIRR Memorial Hermann she was walking but could communicate only in one-word sentences. The therapists there pushed her to the next level.”
When clinical neuropsychologist Cullen Gibbs, PhD, saw Mikayla six months after the onset of the disease, she had dramatically improved in terms of her overall physical functioning and had also made cognitive improvements. “But we had concerns about her attention span, impulsivity and speech,” says Dr. Gibbs, who is director of the TIRR Memorial Hermann Outpatient Pediatric service line. “By then she was doing home-bound instruction and had made good progress but was having difficulty remembering what she’d read. We made recommendations for special education support and the development of an individualized education plan.”
At Kirby Glen, Mikayla completed three sessions of physical therapy and five weeks of occupational therapy – and then focused her attention on speech therapy to hone her communication skills. When Memorial Hermann Pediatric Outpatient Therapy in Sugar Land opened in January 2015, she transferred to the new facility, which was closer to home.
“They had to start almost from the beginning with Mikayla to synchronize her breathing and talking,” her mother says. “She was there three or four days a week, working on breathing techniques and memorization. She had to relearn everything.”
Since then, Mikayla has made substantial improvement, particularly in higher-level speech goals. She returned to school part-time in February.
“Her memory, attention, organization and information processing speed have improved dramatically,” Dr. Gibbs says. “Mikayla had significant difficulties with speech at the beginning but has become more conversational. She is hardworking and was very motivated to get back to school and her friends. She’s come a long way, and we’re very pleased with her progress.”
Velma Williams says her daughter, who is now 13, has made a 180-degree turn thanks to TIRR Memorial Hermann. In April 2015, she added more classes to her schedule and is doing well.
“I can’t imagine a better facility,” Velma Williams says. “They’ve always given us 110%. They gave her homework to prepare her for her return to school. She’s reading and asking questions. Her memory is back, and they’ve given her strategies to improve it further and get along in life. We’ve always encouraged her to do her very best and that’s what she’s done to this day. She’s not 100 % but she’s close.”
Like most patients who recover from anti-NMDA receptor encephalitis, Mikayla remembers nothing of her initial hospitalization. “With faith in God and her friends’ support, she’s embraced her condition,” her mother says. “Dr. Lankford was pivotal in her diagnosis and early recovery, and TIRR Memorial Hermann gave us back our old Mikayla. We’re a believing family. God sent them here to help us.”
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