A faded piece of paper taped to her bathroom mirror lists the things that 20-year-old Amy Dykes needs to do each morning: take her medicine, brush her hair, wash her face, brush her teeth, apply her makeup. Today that piece of paper is seldom used, but just two years ago, it was a map that helped guide Amy through each morning.
During Amy's senior year of high school something went wrong. Ever the over achiever, her parents watched and worried as Amy's grades declined, she became disorganized, lost weight dramatically, and even started walking oddly.
"I just didn't really care anymore," Amy remembers. "I would come home from school and just crash, just sleep."
Soon after graduation, the family had their answer - doctors discovered a large, benign tumor in Amy's brain, and her strange symptoms suddenly made sense. Within six hours, Amy was in intensive care, preparing for surgery.
Although the 2007 surgery was a success, alarming complications soon developed. Instead of recovering, Amy quickly declined. She began losing all of her reflexes - she couldn't blink or swallow and she became agitated, delirious, and started hallucinating. Her mother, Mary Jane, who worked as a pediatric medical assistant for 13 years, became proactive and immediately began researching options for Amy. She felt fortunate to find the Kennedy Krieger Institute. Despite the drive of more than an hour from their home in Harford County, Mary Jane knew that's where Amy needed to be.
After Amy was transferred to the Brain Injury Program at Kennedy Krieger Institute, she was diagnosed with Cerebellar Cognitive Affective Syndrome, or CCAS, a rare disorder that caused her to exhibit symptoms of a severe brain injury.
"These unmanageable behaviors made it difficult to take care of her and for our team to provide therapy," he says.
Although not completely unheard of, the delirium Amy was experiencing was unusual. Amy's treatment team, which included mental health specialists, implemented a novel approach that included using a medication that had not been used to treat patients with CCAS before. Within 24 hours the team began to see improvements.
"We had a dramatic response," Dr. Pidcock says. "Amy became much calmer and was able to connect with her surroundings."
"It was like she suddenly woke up," recalls Mary Jane. She asked to go to the bathroom and to select her clothing-things she hadn't done on her own since before the surgery. But the best part was the return of her bubbly and gentle spirit. And she was able to focus on her therapy.
While Amy's parents and brothers rallied around her during therapy, the Institute staff made sure to look out for the family's needs as well. "Kennedy Krieger understands that it wasn't just Amy struggling," Mary Jane says. "Kennedy Krieger embraced us with Family Therapy, free seated massages, and a quiet and relaxing family lounge with internet access, where we could recharge and stay connected with our friends and family."
With the support of her treatment team and a lot of hard work, Amy was ready to go home just before the winter holidays, almost two months earlier than expected. But her work had only just begun.
Recovering from brain surgery is a long and arduous process, and despite the family training and support from Kennedy Krieger, there was no way to fully prepare Amy and her family for what was to come. Mary Jane still has the list of guidelines the doctors and nurses gave her: don't leave her alone, make sure she chews and swallows her food, and monitor her for sleepwalking. Without constant supervision and reminders, Amy simply forgot what she was supposed to do. It was like bringing an infant home from the hospital. The confident young woman who had graduated just months earlier was more like the helpless child she had been 18 years ago.
On a leave of absence from her job, Mary Jane worked day and night to keep Amy safe and help her become more independent. Knowing the ongoing struggles Mary Jane would face, Kennedy Krieger helped her find rehabilitative services that were close to home so Amy could attend daily occupational, physical, and speech therapy.
Meanwhile, Amy's doctors at Kennedy Krieger were available to answer any questions the family had and to offer support and guidance to Amy's local therapy providers. "Kennedy does so much for you after you're discharged," says Amy.
Now Amy is making up for lost time. She is a student at Harford Community College and volunteers at the elementary school where her mother now works. "I want to major in elementary education," she says. It's not hard to imagine Amy encouraging a classroom full of students to do their best. She knows better than most that with hard work and determination, anything is possible. -Laura Laing
Celebrating 30 Years of Excellence
The Kennedy Krieger Institute is one of the nation's leading centers focused on pediatric brain injury rehabilitation. Established in 1979, Kennedy Krieger's Brain Injury Program treats children and adolescents who have rehabilitation needs as a result of a neurological injury or illness. The Program's profound dedication to research, patient care, and helping children transition successfully back into their communities has given it a national reputation.
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