PEDIATRIC STROKES: The Who, What, When, and Beyond…A Patient and Family Guide

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Tonya Stafford, BSN, RN, CPN* and Gina T. Thompson, BSN, RN, CPNUNC Hospitals Chapel Hill, NC

Introduction:

The prevalence of pediatric strokes, incidence of delay

in treatment & misdiagnosis has become an epidemic in

healthcare. Because pediatric stroke is as common as

brain tumors in children, it is imperative that pediatric

nurses are educated in the basics of this disease

condition. ‘Pediatric Strokes: The Who, What, When

and Beyond is a patient and family guide created by The

Project for Expansion of Education in Pediatric Stroke

(PEEPS). This booklet, the first widely-available

resource of its kind in the United States, is a

comprehensive educational tool for patients and

families.

Objectives:• Learn "Who" can be effected by a stroke, including

types, risk factors, and “What” signs and symptoms

are associated with strokes. Strokes can happen at

any age and should be considered as a differential

when a child presents with neurological symptoms.

• Present a therapy roadmap of "Beyond" in divided

pediatric age groups: infants and toddlers, early

childhood, and teenagers.

• Discuss available resources and common

terminology related to pediatric stroke. This was a

need identified by the families that participated in the

initial PEEPS survey.

2 Types of Strokes:

For more information, please contact: • Tonya Stafford (Tonya.Stafford@unchealth.unc.edu)

• Gina Thompson (Gina.Thompson@unchealth.unc.edu)

Methods:• October 2014, PEEPS survey sent to families and

patients affected by strokes.

• Survey included open-ended questions that were

answered by 20 participants. Content for book

was based on needs identified.

BEYOND: A THERAPY ROADMAP…

Physical

Therapy

Speech

Therapy

• Sitting, crawling, walking,

jumping & running

• Strengthening exercises

• Increase movement &

balance (splints & braces)

• Home exercise plan

• Holding a cup, coloring

with a crayon, using a

utensil, using both hands

to grab a toy

• Suck-swallow coordination

• Eating

• Speech development

• Sign language

Physical

Therapy

Rehabilitation is key to help with long term outcome

Speech

Therapy

Occupational

Therapy

• Eating & dressing independently

• Promote self-hygiene: bathing, going to

the bathroom, brushing teeth & hair

PERINATAL

(22 weeks pregnant to

1 month old)

CHILDHOOD

(1 month to

18 years)

TYPES About 80% Ischemic

20% Cerebral Venous Sinus

Thrombosis or Hemorrhage

About 50% Ischemic

50% Hemorrhagic

RISK

FACTORS

• Congenital heart disease

• Placenta disorder

• Clotting disorder

• Infections

• Congenital heart disease

• Disorders of brain vessels

• Infections, head injury

• Sickle cell and

autoimmune disorders

WHAT TO

LOOK

FOR

• Seizures

• Hand preference before

age 1

• Developmental delays

• Hemiparesis

• Sudden numbness or

weakness on 1 side

• Sudden confusion,

difficulty talking or

understanding

• Sudden loss of vision

• Sudden severe headache

• New onset seizures

Stroke Facts• Strokes do not discriminate. They can happen at any age.

• Strokes can happen in infants, toddlers, teenagers and even

in unborn babies. (Actual rate is not known)

• Of children who survive a stroke, about 60% will have

permanent neurologic deficits.

• Boys are more likely to have a stroke than girls.

ISCHEMIC:

Occurs when

a blood

vessel is

blocked.

HEMORRHAGIC:

Occurs when a

blood vessel

bursts within the

brain.

Resources:

Project For The Expansion of Education in Pediatric

Stroke (PEEPS)• www.uncstroke.org/pediatric-stroke

Carolina Acute Stroke Training• Free of charge, available 24/7

• Module #9: Pediatric Stroke

• www.uncstroke.org/CAST

Parent Created Resources• www.bellaflies.org

• www.brendonssmile.org

• www.fightthestroke.org

• www.pediatricstrokewarriors.org

National Resources• The International Alliance for Pediatric Stroke (IAPS)

• The American Stroke Association

• The National Stroke Association

WORDS OF HOPE: Advice from parents & children affected by stroke

• Strengthening exercises

• Increase movement &

balance (splints &

braces)

• Constraint-Induced

Movement Therapy

(CIMT)

• Home exercise plan

Occupational

Therapy

“You are fierce. You’re a survivor. You’re a

fighter through and through. Little brave,

breathe…There’s a mighty warrior within

you. Our children are an inspiration, they

are much more than a diagnosis, and they

will continue to teach us all that differences

can be beautiful and to never

underestimate what they can overcome.”

- Kaysee (Addison’s mom)

“Try not to over-protect your child,

encourage them to try new things.

Let them see what they are

capable of accomplishing.”

- Michelle, age 17

(perinatal stroke survivor)

WHO, WHAT & WHEN:An Overview of Pediatric Stroke

• Swallow study to assess

for problems

• Effective communication

• Memory, recall and

attention

References: National Institutes of Health. (2014). What is a stroke? Retrieved from

http://www.nhlbi.nih.gov/health/healthtopics/stroke

American Heart Association. (2014). Strokes can happen at any age. Retrieved from

http://www.strokeassociation.org/STROKEORG/AboutStroke/StrokeInChildren/What-is-Pediatric-

Stroke-Infographic_UCM_466477_SubHomePage.jsp

International Alliance for Pediatric Stroke. (2014). Insight from the medical professionals. Retrieved

from http://iapediatricstroke.org/doctors_reflections.aspx

Infants & Toddlers

Early

Childhood & Teens