New parents have endured a nine-month gauntlet of rampant mood swings, bizarre food cravings, and false labor pains. Throughout, many have mentally prepared themselves for the late-night feedings, and even read through an owner’s manual to learn the mechanics behind a properly adjusted car seat. Some may have even picked up the finer points of infant massages to help with infant growth and development.

However, none of the “What to Expect When You’re Expecting” books prepare a parent for the moment the emergency room doctor comes in to tell them that their sickly infant or toddler has actually suffered a stroke.

Unthinkable as it may seem, a condition normally associated with the geriatric demographic can also strike children as well – the most common pediatric strokes are seen in children under the age of 2. Parents are often horrified to learn that a stroke cannot be cured, since the brain does not heal itself the same way the rest of the body does; the part of the brain injured by stroke will never “grow back” or respond the same as it was before the stroke.
Conventional thinking about pediatric strokes and other traumatic brain injuries used to be that the child’s brain was “plastic” and more resilient to trauma, assuming that a smaller, underdeveloped brain could grow new cells and circuitry enabling a fuller recovery from the effects of a stroke. However, recent research reveals the opposite – pediatric strokes often set the stage for increasingly burdensome cognitive, social, and physical demands.

To circumvent long-term damage in a patient just beginning to experience the world, a vast network of interdisciplinary specialists are called in to coax other parts of the patient’s brain to “pitch in” and take over the duties of the injured section. In a race against time, professionals across several specialties are working in unison with the young patient, an alliance that is transforming the field and saving lives.

Different Strokes, Different Focus

While adult strokes are often caused by elevated blood pressure or cholesterol, a history of smoking, alcoholism, and obesity, pediatric strokes are instead caused by birth defects, infections – such as meningitis or encephalitis – brain trauma, and even blood disorders like sickle cell disease.

“Though strokes can occur at any age, neurological outcomes of the pediatric patient are vastly different from the adult,” says Mary Greco, SLP, CCC, a stroke therapist at the Calif.-based Santa Barbara Cottage Hospital.

“Adult stroke rehabilitation is working to regain lost function and gain independence, while strokes in children affect the child’s initiation of skills. [And] while the effects of a stroke in an adult manifests themselves immediately or very soon after the injury occurs, it is crucial to take into account the child afflicted by a stroke may experience developmental delays in the future that are not evident now,” she says.

Unlike adult stroke patients, who have already experienced the major cognitive and physical milestones, many pediatric stroke patients are unable to describe to what degree they were cognitively developed prior to the injury. Therapists will work closely with the family, making careful note of what developmental norms were achieved at the time of the injury to determine where the regimen should begin.


“The basic premise in working with children is that their ‘job’ or ‘occupation’ is to be a child, who plays, grows and develops, and learns,” says Judith Beck, MSP, CCC-SLP, senior manager for pediatric rehabilitation inpatient and outpatient at Banner Children’s Hospital in Phoenix. “Their world is made up of play, discovery, and acquisition of skills and knowledge.”

She continues, “Therapy is not only focused on how to retrain the brain to gain back what might have been lost, but to move forward with the learning that still needs to occur while finding the best way to do that for the patient.”

Families also play a much larger role in the pediatric therapeutic process, as they are, in most cases, the role models for the pediatric patient. The carryover of therapy techniques to the home is discussed with both the family and patient – in this way, treatment is not limited to the hours of direct intervention within the therapy room or structured environment.


“Rehabilitation clinicians instruct parents in therapeutic play based on age-appropriate levels,” says Deborah Wessel, PT, of Santa Barbara Cottage Hospital. “Given that play is ‘children’s work’, this method of intervention proves to be the most efficacious. With regard to successful compliance across therapy disciplines, children are motivated by activities of play under the least restrictive conditions. The individual’s home environment is the natural place of learning and serves best to heighten ability to learn new behaviors.”

The Technological Edge

With the aid of an ever-advancing technological frontier, arrays of devices have been designed to provide additional accessibility and communication to individuals working through stroke rehabilitation. While adult stroke patients are typically unfamiliar with and hesitant to use these newer computer systems, children growing up in the “Digital Age” are more than eager to use these new devices.

“There are a variety of augmentative communication devices available for children to use if they are unable to speak or have poor intelligibility,” says Erin Namey, MA, CCC-SLP, a therapist at Canton, Ohio-based Mercy Medical Center. “Young children can quickly learn the technology associated with these devices and they are very motivated to use them. Also, there are many companies that have created computer programs to develop receptive language skills and concept development – these increase the length of time that a child will attend, thereby increasing the length of intervention, which should result in more progress.”

Among the more popular devices used to assist pediatric patients in stroke rehabilitation include:

• Speech synthesizers provide a spoken voice for individuals who cannot communicate orally, but can communicate their thoughts through typing, as they progress through rehabilitation.
• Alternative keyboards featuring larger- or smaller-than-standard keys or keyboards, alternative key configurations, and keyboards for use with one hand.
• Electronic pointing devices used to control the cursor on the screen without use of hands, using ultrasound, infrared beams, eye movements, or nerve signals.
• On-screen keyboards allow users to select keys with a mouse, touch screen, trackball, joystick, switch, or electronic pointing device. On-screen keyboards are helpful for individuals who are not able to use a standard keyboard due to dexterity or mobility difficulties.

“Technology can be used to compensate for cognitive deficits, expressive language, receptive language, pragmaics and/or oral motor functioning,” says Vikki Bedigan, MS, CCC-SLP, who works in Banner Children’s Hospital’s Outpatient Desert KIDZ Therapy Center. 

“For example, a child demonstrating difficulty with organization may benefit from the use of a palm pilot, laptop, or other organizational tool. Use of these tools can be motivating to the pediatric population, not only because they can decrease the cognitive load placed on a recovering brain, but they are also familiar tools already utilized by peers,” she says.

Therapists have found that social networking is also important to many pediatric patients as time spent away from school, friends, and associated extra-curricular activities, may lead to social isolation and depression. The use of Internet instant messaging, e-mail, and text messaging often assists in providing the pediatric patient with links to friendship and other social support networks.

“Overall, younger pediatric patients are more willing to use assistive technology than older/teenage patients or adults,” says Kate DeMarco, MS, CCC-SLP, a therapist at the Rehabilitation Institute of Chicago. “The adolescents that I see are often image-conscious of having a big bulky device in front of them. Yet, many of my adolescents are very motivated to use the computer to check their MySpace or Facebook sites and communicate with friends. If I can turn this into a therapeutic communication or cognitive-communication task, I often see increased effort to complete the tasks.”

A One-Sided Struggle

After a stroke, it is common for a patient to lose mobility and/or feeling in the extremities opposite to the side of the brain affected by the stroke. Depending on the location and severity of the lesion, a patient may demonstrate a paresis or paralysis in the right arm and leg. Some patients could become unaware of their weaker side, relying almost completely on their more dexterous side to compensate for their needs.

“If a patient demonstrates a one-sided neglect, it often affects cognitive/language tasks such as reading and writing,” says Bedigan. “Since both of these activities are either currently important or will become largely important to the daily routine of a pediatric patient, it is imperative that treatment includes compensatory strategies for this deficit. Implementation of a self-cueing (tactile, visual, verbal) system is utilized to remind the patient to continue to visually scan past midline in an attempt to gain access to all information provided.”

Unlike adult patients who can be shown that they are neglecting their affected side and be shown techniques and activities to reduce this condition, children may need more coaxing to use their disabled, less adept limbs and appendages during play activities. Stacking blocks or pressing certain keys of a computer program with rigid fingers or a dead-weight limb has drastically less appeal for the child and, in frustration, they simply use the unaffected limb to perform all tasks.

Christa Valkanos, MS, OTR/L, a therapist at the Rehabilitation Institute of Chicago, says the issue of one-sided neglect may not lie with the patient. “I find that a majority of the technology available is not able to be sized to children of school age and younger. Typically prefabricated splints need several adjustments for a proper fit versus a custom-made splint. However, one particular technique that is very successful with children is constraint induced movement therapy,” she says.

Without the use of compensatory strategies by therapists, pediatric one-sided neglect could result in further injury, inability to participate in daily activities, and foster a sense of helplessness. Although constraint-induced movement therapy has been used extensively in adults, the pediatric population has psychological concerns that need to be considered. Depending on the amount of time in the restraint, patient frustration becomes an issue, as well as the danger of restricting the  child’s already-limited ability to experience their environment.

“This method involves limitation of the use of the non-affected limb to generate use of the weakened limb,” says Carla Griffith, PT, DPT, director of therapy services at Santa Barbara Cottage Hospital. “Therapy interventions of this type may be utilized with adults, but are also employed by pediatric clinicians. The intent of either population is to stimulate neural pathways for brain regrowth that supports improved muscular function. Regardless of the intervention method, adults and children receive the best practice technique based on acquired research data.”

The Hard Times

Professionals working in the field have seen a range of common emotions from people who have had strokes, including anger, anxiety, fear, frustration, and grief – these sometimes become an obstacle to an effective regimen. Unlike many of the adult patients, the pediatric population is a generally more resilient group. Already predisposed to not having control over their own daily routines, school-age pediatric patients are accustomed to working toward the development and new learning skills on a daily basis.

“I think that the children are less frustrated because they often only know this adaptive method as the way things are, versus an adult who may get frustrated that things are not the way they used to be before the stroke,” says Kelly Pruet, OTR/L, a therapist at Mercy Medical Center. “When treating a child who has had a stroke, it is often easy to entertain the child and ‘play’ something that will incorporate what you want the child to do. For example, reach up high over their head to grab a Hot Wheels® car using their stroke-involved arm/hand.”

Depending on the site of the injury, stroke patients may also demonstrate emotional instability or inappropriate emotions, as well as extreme mood swings – a common behavior in the early stages of rehabilitation. In addition, a patient who has suffered a stroke may exhibit behaviors such as self-absorption, mental inflexibility, and a particular need for a structure or daily routine. This need may prove to be challenging to a pediatric patient in light of the rapidly changing lifestyle of a developing child.


“Psychological considerations of treatment cannot be overstated in adult and pediatric patient populations,” says Stephanie Hall, OTR/L, with Santa Barbara Cottage Hospital. “Clearly, fearful children are unable to articulate their concerns, as would an adult. When in unfamiliar environments in which they encounter procedures that may result in discomfort, pain, and increased anxiety, they may act out rather than verbalize their fears. These negative behaviors require clinical acumen to identify and remediate, in order to effect a recovery program that is achievable.”

Another challenge in therapy is working with a pediatric patient undergoing treatment for cognitive, language, physical, or emotional deficits who is becoming frustrated with their inability to function as they did before the injury. This can be especially challenging if these patients are undergoing rigorous therapy routines to restore baseline function, yet their peers are progressing rapidly from day to day. As the frustration mounts, patients – especially those with language and/or cognitive deficits – may find it difficult to express these feelings or comprehend why they are having them.

“We are lucky enough to have a psychologist on the floor to assist if there are any major behavior or emotional problems, and I have to say that I refer to her often,” says DeMarco. “Positive reinforcement is very effective. Sometimes I will set up a token system – for example, a sticker chart where the patient gets to choose a preferred activity or game if they fill their sheet. I also use schedule boards to make the session activities more visual and help patients to know that there is an end. I always try to give an alternative behavior to replace a less desirable behavior.”

While stroke care for adults has changed drastically – with the advent of special stroke units and improved understanding of treatments – similar advances in pediatric stroke care have been slower to arise. Specialists working in this field are still struggling to curtail the long-term physical, emotional, and social effects of stroke in today’s infants and children. Pediatric stroke survivors may experience decades of therapy sessions, changing medications, orthotics, and behavioral interventions, and it is vital to inform and prepare today’s therapeutic field for these patients of tomorrow.

— Bob Stott is a staff writer at Therapy Times. Questions and comments can be directed to bstott@therapytimes.com.