Who doesn’t know a teen or tween that likes to sleep? But when A’hyzia Johnson started falling asleep at all times night and day, she knew something was wrong.
When the good student, volleyball player and competitive runner started falling asleep in class, A’hyzia’s teacher knew something was amiss and urged her to see a doctor.
And while at her grandmother’s in Atlanta, A’hyzia’s grandmother knew something was up when her usually active granddaughter was crawling into bed to sleep rather than eating dinner or hanging out with her friends.
This odd behavior started on a Monday, and by Friday morning Grandma was so worried she took A’hyzia to the doctor who sent them to Scottish Rite Children’s Hospital in Atlanta. There, Grandma called A’hyzia’s mom, Kourtney, who took the next flight to Atlanta. Through the day, A’hyzia’s mobility decreased dramatically, and by midnight when mom arrived, A’hyzia was unable to walk at all.
A battery of tests found two lesions on A’hyzia’s brain. She spent 27 days at the hospital, including a week in the ICU, and then provided speech, occupational and physical therapy as they addressed the inflammation that affected her whole right side. The first diagnosis was acute disseminated encephalomyelitis, which primarily affects teenagers and children.
Ready to travel, A’hyzia came back home to Tucson with her mom, but just a week later Kourtney noticed A’hyzia’s face was droopy. An MRI at TMC for Children showed that the two original lesions on her brain had expanded to five lesions.
Five lesions became seven. After the new year, A’hyzia travelled to Phoenix Children’s Hospital for a brain biopsy. A’hyzia and her mom stayed for a month in Phoenix before returning to Tucson. Again, only a week passed before A’hyzia was back in the hospital for another week while the medical team battled to control the inflammation that was affecting her brain and spinal cord.
Then as suddenly as the symptoms had arrived, A’hyzia was well enough to go home. She was fine for four months until June 2013 when she stopped being able to talk and hiccuped for three weeks straight. At TMC for Children, A’hyzia underwent six spinal taps. Reduced to the state of a newborn baby, her blood pressure became elevated and no medicine seemed to help. The Center for Disease Control and Prevention joined in the inquiry, but it was Dr. Monica Chacon of the Center for Neurosciences who finally provided a diagnosis of multiple sclerosis.
At 15 years old, a diagnosis of multiple sclerosis is unusual. The symptoms usually show up when people are their 20s or 30s. The diagnosis changed A’hyzia and Kourtney’s world overnight. Kourtney submersed herself in finding everything she could out about multiple sclerosis as A’hyzia struggled to come to grips with the diagnosis.
Kourtney and A’hyzia are effusive in their praise for the nurses and staff at TMC for Children.“The other hospitals might be bigger and have fancy visitors, but the compassion and care at TMC for Children is hands down the best.” Kourtney explained. “At TMC for Children you feel like it’s your mom looking after you. You know, the way your mom makes you feel all cared for.”
She also is fond of TMC Pediatric Therapies. “If I won the lottery, I’d build them a new building.”
Today, A’hyzia is the youngest of three members of her youth MS support group. She has been out of the hospital for 10 months. She visits the TMC Outpatient Procedure Center at the El Dorado Health Campus for monthly infusions that are helping eliminate the brain lesions.
Her sleep is back to what is considered normal for the teenaged sophomore she is. And, while she may have curbed her athletic pursuits, she continues to excel in school and now dreams of becoming a nurse or a neurologist.