A Sinus Infection Misdiagnosed
While on vacation in Northern Utah, 12 year old Ashley came down with a sinus infection. She had a long history of sinus infections, roughly one a month since she was born. However, this particular one took a turn for the worse. Flu-like symptoms began, and a pediatrician in the Northern Utah area diagnosed it as the flu. Her condition only continued to worsen, and she saw two more pediatricians while she was still there. On June 29th, Ashley traveled home to Big Water, UT, located on the Utah and Arizona border.
Among the symptoms she was experiencing upon her return home was weight loss, high fever, emotional aggression, and she was repeating things. Her face had also gotten really pale, and her eyelids had gotten very dark.
Then on July 5th, Ashley woke up disoriented. Memory loss had begun, and though she knew she was in her bedroom in Big Water, Utah: she did not remember coming home. She got out of bed to go and find her mom, but was too weak to walk. Paralysis had begun to set in on the left side of her body.
She was rushed by family members to their family physician who was very familiar with Ashley’s medical history and reoccurring sinus infections. He took one look at her and shined a light in her eyes, determining that she was experiencing light sensitivity. It was a sure sign (in his mind) that there was something going on with her brain. He took her to an emergency room for CAT scans. And while the scans were underway, a life-flight helicopter was arranged to take her to Phoenix Children’s Hospital - nearly 300 miles away.
When Ashley and her family arrived in Phoenix, they had her medical records in hand. There was bleeding on both sides of her brain, swelling, and mid-line shift. Even after analysis, doctors were unable to determine a diagnosis. Twenty doctors were brought in to collaborate.
Diagnosing Ashley’s Condition: Viral Encephalitis
Hours later, the team came up with three possibilities for her diagnosis: a brain tumor, brain cancer or viral encephalitis. It was an intern, studying from New York, who recognized and confirmed that it was viral encephalitis.
Viral encephalitis is swelling of the brain caused by a specific virus(es). Now the next step was for the doctors to diagnose the specific virus that was causing the encephalitis. The next day Ashley had a brain biopsy.
The right side of Ashley's head was cut open and ten pieces of brain tissue were removed for testing. The biopsy results confirmed that the Herpes Simplex Virus, or HSV-1, was causing the problem.
The virus inside Ashley's brain was so far along, and had done enough damage; the doctors were surprised she was alive when they arrived. Infectious disease experts at the Hospital said she'd have a 25% chance of survival. Even if she did survive, she would most likely be in the hospital recovering for six weeks and then be in therapy until December - a very long time to be away from family and friends back home. There were also concerns that she could have severe mental disabilities and be paralyzed on the left side of her body.
With this diagnosis confirmed, medications and rest would be the best remedies to fight the virus and help Ashley recover. And, against all odds, she recovered and was released from the hospital three weeks later.
Uncovering the Causes,
The HSV-1 virus lives behind the ear, where it remains dormant only causing the occasional cold sore. Most people are born with it. The doctors from the Barrow Neurological Institute at Phoenix Children's Hospital successfully determined that while her immune system was fighting the sinus infection in Northern Utah, the Herpes Simplex Virus traveled into her nervous system and attacked the brain.
The odds of this happening was even more amazing - only one in every two million people contract this condition.
While at the Hospital, Ashley had numerous blood tests. One of them finally uncovered the source of the sinus problems she had experienced in her childhood. The results revealed that she was very low in Gamma A, which is the white blood cell that protects the upper respiratory system. While her immune system was distracted and weak from fighting the sinus infection, the virus was able to get into nerve pathways and replicate it’s way to the brain essentially undetected by her immune system
Summer 2016 marked one decade since the Encephalitis. Today Ashley is pretty healthy and was able to achieve her biggest life goal: becoming a mother. She still lives in Southern Utah with her two young sons where she operates her photography and graphic design business. She does not have much memory of life before the injury, and hence considers HSV1 Viral Encephalitis the beginning of her journey. Interestingly, recent tests show that she no longer has a Gamma A deficiency and hence she rarely gets sinus infections anymore.
While she still does live with a few minor disabilities, she graduated high school at 16 and is starting college next year to pursue a Communications Degree. She enjoys lots of hobbies: mainly writing, playing piano, crocheting and photography. She is an active member of her community: serving on her town’s Community Action Network, two festival committees, and as Conductor of the music at her church. She has an insatiable love of exploring the great outdoors: swimming, hiking and kayaking in Southern Utah and Northern Arizona’s “Grand Circle.” Though eager to tackle her next big goal of publishing novels: Ashley is open to wherever life may take her, because as the injury showed her: you cannot plan for the unexpected. She has connected with the mother of another HSV1 Viral Encephalitis patient on the other side of the world who found her story written here.
"Sometimes when things seem dark and you fear you’ve been buried, you’ve actually just been planted. All our thanks to Phoenix Children’s Hospital and it’s Specialists for turning what could have been an early ending into a new beginning.”
- Ashley Rankin, former patient