When Evan was born in July 2007, he was perfect, beautiful, alert and a miracle. Five months later, however, it became increasingly difficult to get Evan dressed because his right arm was stiff and unbendable.

When it became obvious that Evan was neglecting his right arm and only using his left, we took him to see his pediatrician. We were referred to a pediatric neurologist, sent for an MRI and received the news that would change our lives – Evan had suffered a stroke.

The diagnosis was devastating and left us wondering how it happened and what we could have done to prevent it.

Pediatric stroke is not rare. Approximately one in 4,000 infants suffer a stroke and between two and 13 in 100,000 children, ages 1 month to 18 years, will suffer a stroke. In fact, pediatric stroke is as common as juvenile or type-one diabetes.

Because early intervention is key to little stroke survivors, it is important for parents and doctors to recognize and act on signs and symptoms of pediatric strokes, including: sudden weakness or altered consciousness, seizures – more common in children, early handedness, (e.g. use of one hand, often fisted or not bringing both hands to midline during play) and delays in development – motor, language or global.

In the year since his diagnosis, Evan has faced regular appointments with neurologists, orthopedists, hematologists and physical, occupational and speech therapists.

Fortunately, Evan has made significant progress through therapy and the use of Botox®. We believe he will make an almost-complete recovery; however, we also hope and pray that he won’t suffer additional strokes.

A neurologist is essential in identifying causes and managing the acute stroke, and treatment depends on rapid evaluation and identification of cause, including: heart disease, vascular anomalies (e.g. dissection), vasculitis, metabolic disorders and hypercoagulable states. Management of acute stroke demands the latest in neuroprotective strategies in the hospital.

Seizures, fever and low glucose can worsen the stroke. Seventy-five percent of children experience seizures with the initial stroke. Video EEG can identify subtle seizures which are more common in children. The latest advance is offering hypothermia for term newborns with hypoxic ischemic encephalopathy.

Aspirin is often used for secondary prevention, and some mitochondrial illnesses can be treated with palliative diet manipulations. However, in the long term, it is essential to offer aggressive surveillance and treatment for seizures, spasticity, visual deficits and developmental delay.

Seizures can be subtle and add to cognitive burden. They are seen in two-thirds of patients with stroke. Treatment of spasticity with botulinum toxin is a standard of care and still under-utilized in children after stroke.

Currently, stroke prevention is only possible in children with sickle cell disease. For these kids, transcranial doppler ultrasound can identify those at the highest risk of suffering a stroke. However, there are many barriers to using this safe, painless and relatively inexpensive technology, including availability, funds and awareness.

As a result of his stroke, Evan suffers from hemiplegic cerebral palsy. And, while we appreciate that our son has a strong will, we wonder if it will translate into behavioral issues as he gets older. Like most parents of pediatric stroke victims, we face an overwhelming sense of wonder about what the future will bring for our son.

Children frequently have long-term disabilities, including cognitive and sensory impairments, epilepsy, visual and behavioral difficulties, and cerebral palsy. Early intervention is very important for successful rehabilitation.

Children who show early signs of developmental delay or hemiplegia can be referred to the Texas Early Intervention Services program for additional evaluations and therapy.

Many families of pediatric stroke survivors face financial burdens and emotional tolls. Medical professionals can help by referring families to organizations, such as Children’s Hemiplegia & Stroke Association (CHASA), a non-profit organization dedicated to raising awareness of pediatric stroke and to improving the lives of children and families affected by pediatric stroke. Other local resources for support include Any Baby Can, Easter Seals and Brighton School.

Another important way you can help is by spreading awareness that kids have strokes, too.