Inspiring Pediatric Stroke Awareness and Research
by Lisa Sun, M.D.
I met Laney and became her neurologist four months after she began having TIAs (transient ischemic attacks) and about three months after the series of devastating strokes that took away her ability to speak and move. I only knew Laney after she suffered this terrible brain injury, but despite that, I was immediately captivated by her spirit. When I met her, Laney was cognitively intact and able to use devices to communicate. Beyond that, she had a smile and laugh that could brighten an entire room.
Increasing awareness of pediatric stroke is one of the key missions of the Laney Jaymes Foundation, and is also one of my personal missions. I have many patients who, like Laney, could have benefitted from earlier recognition and diagnosis of stroke. I hope that the information here will demonstrate why early recognition of pediatric stroke is so important and empower everyone who reads this to recognize stroke and know what to do if you witness a child having a stroke.
Laney at 3 1/2 years old, one month before her TIA’s began.
How common is stroke in kids?
You might be surprised to hear that kids have strokes. In fact, stroke in children is much more common than most people think. Some studies estimate that the risk for stroke in children is up to 8 per 100,000, and the risk for stroke in babies is even more common at 25 per 100,000 live births.
Which children are at risk for stroke?
While some children have known risk factors for stroke, many childhood stroke patients are perfectly healthy leading up to their stroke. Kids at high risk for stroke include children with heart disease, sickle cell disease, cancer, blood clotting problems, and some genetic conditions.
What are the signs of stroke in a child?
Signs of stroke in a child may look the same as signs of stroke in an adult, but children are more likely to have seizures at the onset of a stroke. Typically, signs of stroke come on suddenly. These are some common ways stroke in kids can look:
• Sudden weakness or sensory changes on one side of the body
• Facial droop
• Slurred speech
• Sudden severe headache
• New seizure, especially one that starts in one part of the body (instead of the whole body at once)
What should I do if I think a child is having a stroke?
Call 911 and say you are concerned about stroke. Keep the child in a safe place until the ambulance arrives.
Are there treatments for stroke in kids?
Yes. Some children may be candidates for medications or surgeries depending on their age, type of stroke, and time since their stroke started. It is very important for the child to receive these therapies quickly because they are safest and most effective when done early in the course of a stroke. All children who are having a stroke should receive treatments to protect their brains and early rehabilitation.
Laney two months after her first acute stroke, enjoying a visit from her newborn baby sister.
What kind of research is going on at Johns Hopkins that can benefit children with stroke?
It was a privilege to be Laney’s neurologist for the last six months of her life. But in those six months, and in the year since Laney died, I’ve often felt helpless. Despite my extensive training in pediatric neurology and then pediatric and adult stroke, it was clear to me that there is so much we as doctors don’t understand about pediatric stroke. I discussed Laney’s case with a number of eminent adult stroke neurologists as well as pediatric neurologists, intensivists, and geneticists. I presented her case to about 50 of the foremost experts in pediatric stroke from around the world at a meeting of the International Pediatric Stroke Study. My colleagues were engaged and intrigued by Laney’s case, but no one had answers to the questions of “why?” or “how can we help her?”
The unanswered questions can be overwhelming, but as a physician-researcher, the prospect of improving care for future patients who have strokes (or preventing strokes altogether) is exciting and hopeful.
At Johns Hopkins, I am one of two pediatric stroke neurologists. Dr. Ryan Felling and I have a number of quality improvement initiatives and research projects focused in pediatric stroke, which I’ve outlined below. We are also involved in the International Pediatric Stroke Study (IPSS), which is an international registry based out of Toronto. Pediatric stroke specialists contribute data on a volunteer basis with the permission of parents of children who have had a stroke or blood clot in the brain. The goal of the IPSS is to understand, prevent, and improve outcomes in pediatric stroke. We are fortunate to have a collaborative group of physicians who have all dedicated their lives to helping babies and children with strokes.
Preventing stroke in high-risk populations
Though many strokes happen unexpectedly in previously healthy children, there are some high-risk groups who we can target for stroke prevention interventions. Through research, highly effective screening techniques have been developed for patients with sickle cell disease. These preventative measures have decreased the rate of stroke in this population drastically. Other high-risk groups include children with congenital heart disease and children with cancer. At Johns Hopkins, we have ongoing research studies aiming to identify biomarkers of stroke risk so we can implement pathways for stroke prevention in high-risk populations.
Laney spent the whole summer in hospitals — where she spent her fourth birthday, and where she was when her baby sister was born.
Acute treatment of stroke in children
We know the treatment of stroke is highly time-dependent. When a child has a stroke, we usually have a matter of hours to administer treatment or perform procedures to improve the child’s chances of a good outcome. Simply put, we need to treat the child as quickly as possible to limit the brain damage. To improve the acute treatment of childhood stroke, we need to improve recognition of stroke in the community – among parents, teachers, school nurses, EMTs, pediatricians, and pediatric emergency physicians, to name a few – so that children can get to us as soon as possible. At Johns Hopkins, we have developed a protocol to rapidly identify children in the hospital or emergency room who might be having a stroke and activate a team of neurologists with expertise in pediatric stroke, intensivists, radiologists, and interventionalists so that we can rapidly diagnose and treat stroke. In a quality improvement initiative, we are systematically evaluating our response times and outcomes so that we can continue to improve the experience and outcomes of children with acute stroke.
Recovery after pediatric stroke
Once a child has had a stroke, the focus turns to rehabilitation and recovery. At Johns Hopkins, we are dedicated to understanding mechanisms of brain repair after stroke and harnessing and developing new technologies to improve outcomes after pediatric stroke. We have ongoing preclinical research on neural stem cells and the mechanisms of brain repair after stroke. We are also investigating noninvasive technologies to promote brain recovery in patients, including neuromodulation techniques such as transcranial magnetic stimulation (TMS) and transcranial direct current stimulation (tDCS). These are not clinically available for children at this time, but through ongoing research, we hope to be able to offer these technologies in the future.
Laney, 3 years 9 months old, one year before she passed away after a long and courageous battle to recover from numerous strokes.
Being Laney’s neurologist, and now Brielle’s (Laney’s younger sister) neurologist, has been an honor. But it has also been intensely humbling. It has motivated me to advocate on institutional, statewide, and national levels for pediatric stroke awareness and early recognition. Pictures of Laney and Brielle sitting by my desk are my constant reminder of why this work is so important and why we must forge forward despite the vast questions that remain before us unanswered.
I have learned an incredible amount from Laura and Brian, Laney’s parents and the founders of the Laney Jaymes Foundation. About advocacy. About strength. About resilience. And mostly, about love and what’s important in life. They have taken the most devastating situation – one that no parent should ever have to face – and have selflessly and tirelessly worked to promote awareness of pediatric stroke and advance pediatric stroke research so that the lives of other children can be saved in the future.
Thank you so much for supporting this incredible foundation. Together, and with inspiration from children like Laney, we can conquer pediatric stroke.
About Lisa Sun, M.D.
Lisa Sun, M.D. is an Assistant Professor of Neurology and the Associate Program Director, Pediatric Neurology Residency at The Johns Hopkins Hospital.
Dr. Sun is an expert in both pediatric neurology and cerebrovascular neurology, with a special interest in pediatric and young adult stroke. She focuses on both the acute care of stroke as well as longitudinal management of an array of neurologic conditions that affect children and young adults
Dr. Sun’s clinical research program is broadly focused on developing a deeper understanding of the causes, management, and prevention of stroke in the young. More specifically, Dr. Sun is interested in stroke associated with cancer and chemotherapy.