Overview

Young boy with cerebral palsy outside in wheelchair

Cerebral palsy (CP) is a general term that refers to a group of non-progressive disorders of movement and posture. Current research sees CP as a syndrome or a description of a clinical presentation, not as a diagnosis. Although previously it was thought to result from injury or malformation of the developing central nervous system, genetic causes or contributions to an injury are increasingly important. Resulting disabilities may range from mild (apparent only as a stiff gait) to severe (no independent mobility) and may be associated with a variety of co-morbidities, including intellectual disability, seizures, poor growth, scoliosis, and visual and hearing deficits. Congenital neurologic disorders (e.g., schizencephaly, hydranencephaly) also are considered to be part of the CP syndrome. They are likely due to brain abnormalities that occur very early in the development of the fetus and may be both brain injuries and genetic entities.

In the US and Europe, most cases of CP (approximately 80%) are due to prenatal factors. Genetic conditions are thought at this point to cause up to 30% of CP cases. Only 5-10% of CP is caused by injury related to the birth process. [Odding: 2006] Fewer than 10% of children acquire CP during the first year of life due to injuries from meningitis, encephalitis, near-drowning, or other asphyxial event. In contrast, 80% of CP in the developing world is caused by postnatal factors, most commonly infection. [van: 2007] Most experts in CP would now recommend that all children with CP undergo evaluation for the etiology, even if there is clear evidence of a preceding event. Additionally, all children with CP need follow-up to watch for slow progression of a disorder that has mimicked CP but is actually an underlying genetic/metabolic disorder. Whatever the underlying cause, management of the child with CP requires coordination of multidisciplinary team efforts to address the multiple medical, social, psychological, and educational needs.

Static encephalopathy

ICD-10 coding

G80.X, Cerebral palsy

The “X” indicates the need for additional one-digit coding that indicates further details of diagnosis. ICD-10 Cerebral Palsy Coding Reference (icd10data.com) provides more information. Additional codes for the cause of cerebral palsy, if known, also are suggested (newborn stroke, etc.).

Prevalence

According to the Centers for Disease Control and Prevention, the prevalence of CP is 1-4 children per 1,000. CP is more common in black children than white or Hispanic children. [Centers: 2020] In some developed countries, most examined in Australia, the incidence of CP has declined. [Novak: 2020]

Genetics

Genetic conditions are thought at this point to cause up to 30% of CP cases, likely a higher number in children without traditional historical findings such as hypoxia at birth. For example, hemiplegic stroke causing hemiplegic CP may be due to a mutation in the COL4A1 gene. [Moreno-De-Luca: 2021] Other examples include Miller-Dieker syndrome, severe lissencephaly due to a deletion in chromosome 17p13.3, dopa-responsive dystonia, which can present as a delay in walking and/or stiff gait, and one of the hereditary spastic paraplegias, which can occur in simple and complicated forms. [Appleton: 2019]

Prognosis

The manifestations, severity, and course of CP vary dramatically across individuals. Accurate predictions of outcomes are difficult in infants. Brain MRI is often helpful but may be misleading. [Distelmaier: 2007] In general, the more delayed the achievement of milestones, the more affected the child will be. Children who are not sitting by age 3-4 and walking by age 7-8 are not likely to learn to walk. However, motor milestones do not predict IQ, which is more predictive of the ability of the child to function independently as an adult. IQ testing may be difficult to do because most tests require motor coordination. Children with CP, e.g., those with restrictions of movement due to spasticity, may need special IQ testing by psychologists familiar with this population.

Published predictions of life expectancy for children with motor limitations and/or intellectual disability are generally based on abilities such as mobility, feeding, and toileting. However, these are difficult to apply to an individual child. Children with severe motor problems are at high risk for death due to pneumonia, urinary tract infections, and sepsis. Comprehensive, coordinated care may optimize the life span for individuals with CP. (For a discussion, see Life Expectancy of Cerebral Palsy (cerebralpalsy.org).)

Practice Guidelines

These guidelines for the assessment of the child with CP have been endorsed by the American Academy of Pediatrics, the American Academy of Neurology, and the Child Neurology Society.

Ashwal S, Russman BS, Blasco PA, Miller G, Sandler A, Shevell M, Stevenson R.
Practice parameter: diagnostic assessment of the child with cerebral palsy: report of the Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society.
Neurology. 2004;62(6):851-63. PubMed abstract / Full Text

Delgado MR, Hirtz D, Aisen M, Ashwal S, Fehlings DL, McLaughlin J, Morrison LA, Shrader MW, Tilton A, Vargus-Adams J.
Practice parameter: pharmacologic treatment of spasticity in children and adolescents with cerebral palsy (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society.
Neurology. 2010;74(4):336-43. PubMed abstract / Full Text

Roles of the Medical Home

A child with CP needs a medical home for well-child and chronic-care visits where progress and concerns can be reviewed and proactively managed. A child with CP often needs access to a large number of subspecialists. The medical home should be the initiator and coordinator of these visits with input from the family, who will sometimes be more familiar with treatment and therapy options than the medical home provider. The goal is to have the child see the subspecialists needed but avoid duplication of services or unnecessary appointments.

Resources that can help with primary care include:

Tracking Form for Children With Cerebral Palsy (AAP) for tracking medical conditions, activities, and participation
Providing a Primary Care Medical Home for Children and Youth With Cerebral Palsy (AAP) for applications of the medical home model when caring for children with CP

Care Notebook may be helpful for families to organize and track progress and issues.

Overview

The initial assessment of a child for the possible syndrome of CP should focus on determining the cause of the abnormal signs (e.g., spasticity or delay in achievement of milestones). In some cases, the diagnosis of CP may be straightforward, as in the child who was born prematurely and is known to have had a high-grade intraventricular hemorrhage, a child who had significant hypoxic-ischemic encephalopathy in the newborn period, or a child with a significant brain malformation. For roughly 20% of children with developmental delay and non-progressive motor involvement, a clear diagnosis cannot be determined. Whatever the underlying cause, the motor problems found in CP and the possible associated problems (intellectual disability, epilepsy, vision impairment, etc.) require similar treatment.

Several reasons why looking for an underlying disorder are given by [Appleton: 2019]. Even in a child with an obvious event, such as prematurity, an underlying genetic or metabolic disorder may have made them more susceptible to the event in question. Although many of these underlying disorders are quite rare, having one of many is not. [Appleton: 2019] In addition, some disorders, such as AADC deficiency, may have a treatment; the disorders that could be helped with treatment will likely increase over the next years. [Appleton: 2019] If a family has information about an underlying disorder for their child’s CP, prognostic information and genetic counseling may be available. Whatever the underlying cause, management of the child with CP requires coordination of multidisciplinary team efforts to address the multiple medical, social, psychological, and educational needs.

Pearls & Alerts for Assessment

Regression in developmental abilities may signal a new problem and unknown etiology

New onset of seizures in a child with CP may cause a regression as they may be interfering with concentration or other abilities. About 40% of children with CP have seizures; clinicians should ask about seizure activity.

Because new causes for CP are being recognized, the clinician should consider (or re-consider) the diagnosis of CP at each visit in any child with CP without an obvious historical cause, even in older children. If there is any question about the diagnosis, refer the child to neurology or genetics. [Appleton: 2019]

Determining if delayed development indicates CP

Some children with CP will present initially with delayed development and no other signs. The developmental quotient (DQ) helps determine if the child’s skill development is out of the broad range of normal. To calculate the DQ, divide the “motor age” (the average age of the child’s current developmental milestones by a standardized test such as the Denver II) by the chronological age (corrected for prematurity). For example, the DQ of a 1-year-old born at term who just started crawling (average age of attainment is 9 months) would be 9/12=75%. In general, a DQ above 70% with a normal neurologic exam and normal quality of movements suggests that development is in the broad range of normal Also, see Developmental Screening.

For Complications

Screen for intellectual disability, hearing and vision impairment, speech and language delays, oral motor dysfunction, and epilepsy.

Presentations

The manifestations of CP in a given patient will depend on the extent, timing, and location(s) of abnormal brain development or injury. The age when a child begins to exhibit signs of CP is determined by the type and amount of brain involvement and the stage of motor development affected by the altered brain function. Because motor development is easily assessed in early infancy, most children with prenatal or perinatal causes of CP can be identified between 4-9 months of age.

Infant characteristics associated with CP include:

Prematurity and low-birth weight - a recent study demonstrated that magnesium sulfate given to mothers at risk for having a pre-term delivery reduced the risk of CP in pre-term babies. [Rouse: 2008])
Genetic or other disorders of brain development, including hydrocephalus
Infection (e.g., cytomegalovirus, sepsis, encephalitis)
Low Apgars at 10-20 minutes after delivery
Periventricular hemorrhage
Blood type incompatibility
Factor V Leiden deficiency or other clotting disorder
Breech presentation
Jaundice
Seizures shortly after birth
Metabolic disease (e.g., glutaric acidemia I)

Although the brain injury itself is not progressive, some aspects of the condition may become more apparent over time (e.g., intellectual disability, extent of increased tone, orthopedic sequelae, seizures).

Diagnostic Criteria

Basic diagnostic criteria include the presence of a non-progressive neurologic motor deficit secondary to brain maldevelopment or injury to the developing brain.

Clinical Classification

Despite many classification schemes for CP, limited agreement among clinicians can occur about an individual’s specific CP classification. However, some classification is important for communication among providers. The percentages described below are from [Himmelmann: 2005].

Spastic CP involves increased velocity-dependent muscle tone causing stiff and awkward movement. Almost 80% of people with CP have spasticity. Children with spastic CP may be further described by the areas of the body affected:

Spastic diplegia (approximately 35% of children with CP): Motor impairment is most significant in the lower extremities. Arm, trunk, and facial musculature are affected, but to a lesser extent.
Spastic hemiplegia (approximately 38%): One side of the body is affected, with the arm usually more involved than the lower extremity.
Spastic quadriplegia (approximately 6%): Whole body involvement (face, trunk, legs, and arms)

Dyskinetic CP (approximately 15% of children with CP) Involves involuntary movements described as athetoid (slow, writhing), choreic (quick fast), or dystonic (longer, sustained muscle contractions, causing twisting movements or postures). These movement disorders generally involve most of the body and can involve the face and tongue, affecting speech. The dyskinetic group also includes hypotonic CP, identified in children with low muscle tone as their major manifestation. Dyskinetic CP is sometimes known as extrapyramidal CP because it results from injury to the basal ganglia and/or cerebellum. A classic example is the CP that results from kernicterus.

Ataxic CP (approximately 6%) results in balance and depth perception problems and may often overlap with other categories.

Mixed CP is a term used when a child has features of more than 1 type. Examples include the combination of low truncal tone and poor head control but with spasticity in the lower extremities or a mixture of spasticity and dystonia (pure dystonic CP is rare).

Differential Diagnosis

The differential diagnosis for CP is becoming increasingly complex as more metabolic and genetic conditions are recognized as having clinical characteristics similar to those seen in CP. [Hoon: 1997] In children with signs/symptoms of CP, such as developmental delay and spasticity, but no medical history compatible with brain injury, a careful evaluation is necessary to determine the etiology of the abnormalities and to rule out an underlying genetic syndrome or a progressive neurological or metabolic condition. Even in children with a known history suggestive of brain injury, MRI should be obtained to confirm the event as the cause of the child’s CP.

In a child with CP of unknown cause, clinicians should consider several general categories of conditions other than CP, such as:

Slowly progressive conditions that may present similarly to CP, including familial paraplegia (presents as spastic diplegia) and some of the leukodystrophies. Brain MRI and serial observations over time will help differentiate these conditions.
Genetic syndromes causing developmental delay, which may become more obvious as the child ages (e.g., developmental delay, poor feeding, and hypotonia in an infant with Prader-Willi syndrome).
Metabolic disease that may present with CP-like symptoms, but also may include developmental regression, periods of emesis and dehydration, and failure to thrive.
Neuromuscular conditions that appear early in life similar to CP. The absence of reflexes, bowel and bladder dysfunction, and muscle weakness (sometimes difficult to differentiate from low tone) should distinguish these.

Comorbid & Secondary Conditions

Associated conditions are common, especially in those children with a more severely affected motor exam, and should be considered during the evaluation of a child with CP.

Intellectual disability (>40%): With a higher percentage in those children with quadriparesis. [Christensen: 2014] See Intellectual Disability & Global Developmental Delay
Epilepsy (41%): Co-occurring epilepsy frequency was highest among children with CP who had limited or no waking ability. [Christensen: 2014] See Seizures/Epilepsy.
Hydrocephalus: Some children will have hydrocephalus, either as the cause of their CP or as an associated condition, e.g., from an intraventricular hemorrhage in a child born prematurely. New or increasing hydrocephalus may cause developmental regression or, if acute, symptoms such as headache and lethargy.
Vision impairment (>15%): Includes strabismus, myopia, cortical blindness and in children with hemiplegia, a homonymous visual field defect. [Christensen: 2014] See Visual Impairment.
Hearing problems : See Hearing Loss and Deafness.
Drooling/swallowing problems: See Drooling in Children with Special Health Care Needs.
Incontinence, constipation : Approximately 25 of children with CP have primary urinary incontinence [Odding: 2006] and constipation is very common. See Constipation.
Learning problems: Even in children with normal intelligence, such as those with hemiplegic CP, subtle learning concerns may become evident during grade school. Attention deficit disorder (with or without hyperactivity) is prevalent and should be specifically inquired about once the child has reached the appropriate age. Autism is also common and should be screened for. See Attention-Deficit/Hyperactivity Disorder (ADHD) and Specific Learning Disability.
Speech/language deficit: See Normal Pattern of Speech Development.

CP may present initially with motor delays. For recommendations regarding developmental screening and initial assessment for motor problems, see Motor Delays: Early Identification and Evaluation (AAP).

Current & Past Medical History

Questions regarding associated features will help the primary care physician identify areas of focus and/or concern. In general, look first at the pattern of development and whether it has slowed, regressed, or plateaued.

Mobility/ADLs: Does the child have abnormal patterns of motor movements? For example, does the child army crawl (lower extremity spasticity), scissor the lower extremities, appear to have early hand dominance (possible hemiplegia), use a Gower maneuver to stand (proximal weakness), have chorea or ataxia, or persistently walk on his/her toes (habitual pattern vs. spasticity)?

Has there been any decrease in their mobility or abilities over time? How is fine motor control compared to other children their age (e.g., self-feed and dress, grasp objects, write efficiently)? Have they made progress in activities of daily living? Any changes in the therapies the child is receiving? Any changes in spasticity treatments, equipment, orthopedic surgeries, contractures, stander? Any change in exercise tolerance?

Growth and nutrition: Are there any episodes of emesis? Has nutritional status, growth, or feeding been a concern? Is the child fed orally or by feeding tube? Is the child receiving any therapy to improve oral feeding skills? Does the child get appropriate fluids? What is the child’s usual calcium intake? Feeding & Nutrition discusses evaluation challenges and gives assessment tips. Feeding Tubes & Gastrostomies in Children lists indications for use of feeding tube and family support tips.

GI: Does the child have constipation and are they toilet trained? Does the child have problems that suggest gastroesophageal reflux disease (GERD)? Constipation discusses constipation management, clean out procedures, and maintenance medications. Toilet Training for CYSHCN provides information and resources for clinicians and families toilet training children with disabilities.

Swallowing and drooling: Does the child cough and/or choke during eating and drinking? Does it take a very long time to feed the child? Is swallowing or drooling a problem? See Drooling in Children with Special Health Care Needs.

Pulmonary: Is there chronic cough or wheezing? Has the child had pneumonia? Does the child have difficulty sleeping? Does the child snore or have frequent awakenings? Are there respiratory concerns?

Neurology: A history of developmental regression should prompt a referral to neurology as it raises the question of a different diagnosis. Has the child had seizures? (See Seizures/Epilepsy.) Does the child have any unusual movements or episodes of unexplained pain or agitation? Does the child have a history of hydrocephalus and/or a VP shunt? Any signs of shunt malfunction (e.g., headache, mood, or activity change, emesis)?

Vision/hearing: Has the child been screened for vision and hearing concerns? Do they wear glasses or hearing aids?

Musculoskeletal/bone: Has the child had fractures? Are there any limitations of joint or muscle movement? Fractures without clinical explanation prompt concerns for osteopenia/osteoporosis, especially in the child on antiepileptic medications, or abuse. Do they have a standing program? Is the child followed by an orthopedic clinician or PM&R to monitor for hip dysplasia, scoliosis, contractures, or joint changes? Musculoskeletal Exam for Common Orthopedic Complications ( PDF Document

579 KB) provides an exam checklist and recommendations, based on findings, for referrals.

Urinary: In the child who has attained continence, are there concerns for frequency, urgency, or dribbling of urine? Is there a history of UTI?

Other: Is chronic pain a concern? Does the family use any complementary alternative medicine (CAMS)?

Family History

Ask about familial spastic paraplegia, dopa-responsive dystonia, and any neurologic disease in the extended family. Familial stroke and clotting or bleeding problems may be important. Family history of CP (which may not really be CP), other developmental delay, or miscarriages/infant death may suggest a specific etiology. Ask about family members with intellectual disability. If there are possible connections, ask the child’s family to gather more information.

Pregnancy/Perinatal History

Pregnancy, labor, delivery, and perinatal course should be detailed, including prematurity, birth trauma, APGAR scores, need for oxygen, feeding ability at and around birth, etc.

Traditionally, CP has been considered congenital, although it may not be evident for weeks or months after birth. [Marcì: 2009] In this scenario, CP may result from an insult to the developing brain that occurred before, during, or after birth. In the US and Europe, most cases of CP (approximately 80%) are due to prenatal factors. Maternal risk factors for having a child with CP include:

Multiple fetuses
Malnutrition
Placental problems
Infection (e.g., bacterial kidney infection, chorioamnionitis) [Bax: 2006]
Toxin ingestion (e.g., methamphetamine)
Complicated labor
Hypothyroidism
Maternal seizures

Developmental & Educational Progress

Review developmental milestones and at what age they were achieved. What are the child’s current abilities? Parents’ estimate of child’s mental age? How does the child communicate (e.g., differential cries, eye gaze, signing, augmentative device, verbal)? Describe the child’s early intervention or school program. Are there new concerns about school or early intervention?

Maturational Progress

Ask about signs of pubertal development (common clinical issues include premature adrenarche, normal pubertal development with associated parental concern about how to handle issues such as menarche or behavioral changes, and delayed puberty). If post menarche, ask about period concerns. Some families may have concerns about inappropriate or excessive masturbation. Some families may want to discuss their concerns about the risk of sexual abuse and how best to ensure their child/teen/adult is safe. Parents may also need guidance in cognitively appropriate approaches to sexual education and independence.

Social & Family Functioning

What concerns does the family have? What kinds or levels of support can the extended family offer? Does the family have experience with chronic conditions or developmental delay? How is the family coping? Are there siblings of the child with CP? Is the child functioning well at school? Does the child have recreational activities and opportunities for friendships? Are there behavioral problems or depression? Is the family accessing available financial resources? Do the family members have access to respite supports? What about the extended family? Has guardianship been considered?

Physical Exam

General

Assess general appearance and interaction of the child with the environment and the examiner. General appearance of head, shunt palpable? Nutritional status? Use of assistive devices such as a wheelchair, hearing aids, and glasses?

Vital Signs

HR | BP | RR

Growth Parameters

Height | weight | head circumference: Growth parameter measurements are critical but may be difficult to obtain accurately. Parameters of children born prematurely may need to be plotted on pre-term growth charts; if standard growth charts are used, correct for prematurity until 18-24 months of age. Children who have low weight, height and head circumference for age may have an underlying genetic syndrome. HC is particularly important to track; an HC crossing percentile lines in the upward direction may signal hydrocephalus, whereas an HC crossing percentile lines in the downward direction may reflect microcephaly. See Feeding & Nutrition for a discussion of evaluation challenges and tips.

Skin

Look for pressure sores in children with decreased mobility, including under ankle-foot orthotics.

HEENT/Oral

Oral exam: The presence of dental caries may signal reflux and may cause food refusal or discomfort. Look for a high arched palate and drooling and/or pooling of saliva at the back of the throat. Look for visual attentiveness, unequal light reflexes, strabismus, and nystagmus. Middle ear fluid should be treated aggressively as it might contribute to hearing loss. In the older child, severe cerumen impaction could be impacting hearing.

Chest

The lung exam should be followed closely in children at risk for aspiration pneumonia and pulmonary hypertension.

Abdomen

Distention or palpable, mobile masses may suggest constipation.

Genitalia

Tanner staging should be followed for signs of delayed or accelerated puberty.

Extremities/Musculoskeletal

Look for contractures, scoliosis, hip dislocation.

Neurologic Exam

Evaluate tone, strength, balance, primitive reflexes, coordination, and reflexes. Classify findings by the type of tonal abnormality and the area(s) affected. Dystonia and spasticity can be difficult to differentiate but it is important to do so. Low tone in infants can be very difficult to differentiate from decreased strength. Check supine posture - infants with low tone will lie in the frog-leg position. Check if the infant will slip through the examiner’s hands under the infant’s arms and whether there is head lag when pulling the infant up from supine. Infants with these problems have low tone but might still be able to kick with good strength if they are angry. Also, check if the infant will bear weight when held in a standing position and, conversely, if the baby wants to keep their legs extended much of the time.

Sensory Testing

Vision screening should be performed with referral to pediatric ophthalmology if problems are suspected. Strabismus and myopia are common, as is cortical blindness. Children with dyskinetic CP may have eye movement problems, such as nystagmus, that interfere with vision, and children with hemiplegia may have a homonymous heminanopia.

Hearing screening should be performed with referral for audiologic evaluation if problems are suspected. Hearing deficits are common in children with CP.

Laboratory Testing

Routine laboratory testing is not indicated; however, some situations may warrant focused lab evaluation:

Metabolic - Testing should be considered in a child with developmental regression, periods of emesis/dehydration, or failure to thrive. In a child with dyskinetic or ataxic CP, consider the possibility of a metabolic disorder.

Hematologic - The role of an evaluation for clotting dysfunction in children whose CP is secondary to an intra-uterine stroke is not clearly defined. It likely varies from clinician to clinician and will continue to evolve as more is understood from research. The role of such evaluation should be discussed with the child’s pediatric neurologist.

Nutritional - Serum markers for nutritional status are of limited value. However, in the child with malnutrition, assessment of targeted vitamin and mineral stores should be considered. In particular, a significant percentage of children with CP demonstrate a deficiency in vitamin D. (See Calcium and Vitamin D.) Some children with CP will have low serum ferritin, evidence of poor iron stores.

Imaging

Neuro-imaging - Imaging in children with CP is frequently abnormal (62-100%) [Ashwal: 2004] and should be performed as part of the initial diagnostic evaluation in a child with suspected CP. MRI may identify an underlying cause (e.g., in-utero stroke or focal brain malformation such as schizencephaly). In the child with spastic quadriplegia, neuroimaging can rule out white matter disorders that can be slowly progressive and that may mimic CP.

Although frequently requiring sedation, the brain MRI is often the best choice for imaging when looking for an etiology. Imaging after about 18 months of age may provide the best yield. Head CT should be considered for several specific issues: if you are looking for calcifications (e.g., if considering congenital CMV), if the child cannot be sedated, or when evaluating emergently for hydrocephalus or subdural hemorrhages.

Imaging does not need to be repeated after the initial diagnosis unless a new clinical question arises (e.g., a regression in abilities).

Skeletal imaging - May be helpful to evaluate orthopedic concerns, most often scoliosis or hip dislocation.

Upper gastrointestinal study (UGI) - Used for assessment of gastroesophageal reflux (although sensitivity and specificity are moderate), delayed gastric emptying, and to rule out a structural cause of GI symptoms.

Genetic Testing

Genetic testing may be indicated if a syndrome or genetic disease is suspected. Also, consider a referral to genetics for testing if there is no explanation for the CP, or if there are other signs such as poor growth of height, weight, and head circumference, dysmorphic features, or otherwise unusual presentations.

Other Testing

Modified barium swallow (sometimes called a cookie swallow or video swallow) - Performed in collaboration with a speech therapist to assess swallowing function and whether the child is aspirating.

DEXA scan - DEXA allows for assessment of bone density. In practice, children with significant motor impairment will invariably be found to have low bone density on DEXA. The degree of low bone density does not predict the degree of fracture risk, and thus the measure has little impact on clinical management. The clinician should focus on optimizing bone health (adequate calcium intake, optimal vitamin D levels, and weight-bearing) in all children with CP. Dexa should be obtained in the rare situation it will impact therapy (e.g., when declining overtime on a medication that could be discontinued (e.g., Depo-Provera, Depakote) or when a child is being treated with bisphosphonates after recurrent fractures). DEXA scan can also be used to assess body composition and can be very helpful to sort out the degree of fat storage in children with CP since other nutritional assessment approaches are not valid (e.g., BMI or weight for height) due to low muscle mass.

DEXA scans are of limited value before age 3 due to a lack of normative data. Implanted hardware (e.g., spinal rods and baclofen pumps) interfere with DEXA reliability.

Sleep study should be considered if the child has difficulty sleeping, disrupted sleep, or signs of obstructive sleep apnea (e.g., snoring, daytime sleepiness, etc.).

Electroencephalogram (EEG) is warranted if there is clinical concern for seizures. Seizures are more common in children with hemiplegic and quadriplegic CP. Children with CP may have many types of seizures, including generalized tonic-clonic, partial complex, and atypical absence. It can be difficult to determine if some events in children with CP are seizures or behaviors. If the event occurs frequently, a prolonged EEG with video may help sort this out. See Seizures/Epilepsy.

Specialty Collaborations & Other Services

Pediatric Neurology (see ID providers [1])

Assists with diagnosis of CP and offers expertise in management of a seizure disorder or evaluation of new neurological changes. Neurology should evaluate the child’s clinical status yearly or more often if indicated. A child with ataxia should be followed closely by neurology to watch for progression.

Pediatric Genetics (see ID providers [3])

Assists if a syndrome or genetic disease is suspected in a child without a clear history of pre-, peri-, or postnatal brain injury. Up to 50% of children with ataxic CP have a genetic cause.

Developmental - Behavioral Pediatrics (see ID providers [2])

Provides neurodevelopmental consultation for the evaluation and diagnosis of children with developmental disabilities such as CP.

Pediatric Physical Medicine & Rehabilitation (see ID providers [1])

Improves functional quality of life through assistive devices, medication, and other modalities. Care may involve physical, occupational, and speech therapy as necessary for management and treatment of spasticity, feeding and language problems, problems with activities of daily living, etc.

Pediatric Orthopedics (see ID providers [4])

Monitors for contractures, scoliosis, and hip subluxation; guides interventions to optimize gait efficiency. Most children with CP and significant tonal abnormalities should be followed by an orthopedic specialist.

Pediatric Gastroenterology (see ID providers [3])

Assists with treatment of children who have weight gaining and feeding problems, GERD, and severe constipation.

Neuropsychiatry/Neuropsychology (see ID providers [3])

Tests cognitive skills in children with motor and/or sensory impairments, which requires special expertise since the extent of motor impairment may not correlate with the extent of cognitive impairment. Attention deficit disorder is common in this population and should be specifically looked for as part of psychological testing.

Pediatric Ophthalmology (see ID providers [9])

Examines for visual deficits and strabismus, which are common in CP. This is particularly important if the child does not have the ability to participate in age-appropriate visual screening during well-child checks. Children with hemiplegic CP should be examined for a homonymous visual field defect.

Pediatric Otolaryngology (see ID providers [4])

Evaluates and treats drooling and swallowing difficulties. Evaluates need for PE tubes if there are frequent ear infections, which may be affecting hearing.

Pediatric Pulmonology (see ID providers [2])

Assesses difficulties the child may be having with cough, sleep concerns, and frequent respiratory infections.

Pediatric Dentistry (see ID providers [60])

Performs dental care. Children with CP may be more prone to caries and may need anesthesia for some dental procedures. Caries may lead to food refusal and systemic disease if untreated.

General Pediatric Surgery (see ID providers [1])

Places feeding tube; alternatively, a percutaneous gastrostomy may be available through gastroenterology.

Pediatric Neurosurgery (see ID providers [2])

Follows children with ventriculo-peritoneal shunts approximately yearly, with additional visits as needed for shunt problems.

Overview

The management of CP focuses on maximizing the child’s capabilities at home and in the community, treating associated medical conditions, and preventing/treating orthopedic complications. Treatment should be interdisciplinary and start as early as possible. A diagnosis of CP can be helpful in obtaining services for the child, and providers should not be hesitant to use the term once the diagnosis is confirmed. Specific interventions are based on:

Child's age
Overall health
Medical history
Extent and severity of the disease
Type of CP
Child's tolerance for specific medications, procedures, or therapies
Expectations for the course of the disease
Opinion or preference of the child and the parents
Funding considerations

Pearls & Alerts for Treatment & Management

Complementary alternative medicine

Many therapies are reputed to be treatments for CP – Not all are successful, and some may even be harmful. Ask families about vitamin and herbal treatments, specialized diets, relaxation techniques, or other therapies. [Samdup: 2006]

Medical home can advocate for additional therapy

The educational system may provide physical and occupational therapy focused upon educational goals. Private therapy may be a necessary addition for some children to allow intensive focus on specific medical goals. The medical home should review therapies and frequency with every visit and advocate for families if more therapy would be helpful.

Children with CP may qualify for Deaf/Blind Services

Children with both visual and hearing impairment, including cortical blindness or visual impairment, may qualify for a deaf/blind program, which can usually be accessed through the local school for the deaf and blind. Children with dual sensory impairment have a disability that is different and more complicated than the sum of vision and hearing impairments and may qualify for special services.

Pneumonia or recurrent pneumonias are a frequent, often unrecognized, sign of aspiration

Children with CP and other chronic disorders are at risk for acute and chronic respiratory illness due to neurological and anatomical dysfunction.

Interventions for Children with CP

A systematic review of various interventions for children with CP can be found at [Novak: 2020]. The authors point out that although not reviewed, a combination of interventions may be preferable to a single intervention; for instance, oral baclofen and stretching braces may be more successful than either alone.

Systems

Development (general)

Developmental delays often trigger the evaluation for CP. Even if the child is only a few months old and/or the clinician is unsure about whether there is a delay, early intervention programs will provide an initial developmental evaluation to any child at no cost to the family. In some cases, they can reassure a family that development is in the normal spectrum or, if there are delays, early intervention can begin providing developmental services.

Although the benefit is difficult to prove for all children with CP, children who were born prematurely and are at risk for CP perform better cognitively if they have received early intervention services. Children younger than 3 years with suspected or definite CP should be referred to an early intervention program. Children at particular risk (e.g., those with extreme prematurity or birth asphyxia) should be referred early, perhaps even before any clear signs of delay. For children with obvious signs of CP, the therapy received through early intervention may not be frequent enough and referrals to rehabilitation programs may be necessary.

Children over 3 years old should be referred to their local school district to determine benefit from developmental preschool and special education. In addition to individualized educational programming, children may receive speech, occupational, physical, vision, hearing services, and adaptive equipment if relevant to educational goals.

Specialty Collaborations & Other Services

Early Intervention for Children with Disabilities/Delays (see ID providers [149])

Involves therapists who provide treatment in the home and/or at child playgroups, depending on the child’s needs. Early intervention programs are low cost, generally with a sliding fee based on family income.

Pediatric Physical Medicine & Rehabilitation (see ID providers [1])

Improves functional quality of life through assistive devices, medication, and other modalities. Care may involve physical, occupational, and speech therapy as necessary for management and treatment of spasticity, feeding and language problems, problems with activities of daily living, etc.

Mobility/Function/ADLs/Adaptive

Spasticity and movement treatment include both surgical and non-surgical interventions. If spasticity is severe or accompanied by secondary contractures and pressure sores, it may interfere with the child’s functional abilities, make hygiene difficult, and cause discomfort. Spasticity may worsen when the patient is ill or upset. Oral medications, in combination with other modalities (e.g., physical therapy), may be very helpful. A team approach and realistic expectations are key to successful therapy. See Practice Parameter: Pharmacologic Treatment of Spasticity in Children and Adolescents with Cerebral Palsy.

Non-surgical interventions may include:

Therapies - physical, occupational, and speech
Positioning aids (used to help the child sit, lie, or stand) - If the child is not sitting, a corner chair, tumble form, or wheelchair is used to allow the child to be in a seated position for feeding and for optimal hand use during play and activities of daily living.
Braces and splints - used to prevent deformity and to provide support or protection. May be used during the day or night to provide stretch and optimal positioning across joints.
Standers/walkers - Use additional equipment to allow standing (weight-bearing may help prevent osteoporosis, allow full lung expansion, stretches hamstrings, and allow children to be on-level with peers) and supported walking (for children requiring help with balance and support for walking).
Medications:
- Oral: Although oral antispasmodic agents may cause excessive sleepiness, they are often tried because they are non-invasive. Examples are diazepam (Valium), baclofen (Lioresal), clorazepate (Tranzene), and clonazepam (Klonopin). Valium given before sleep is helpful in some patients and may not cause daytime drowsiness. [Mathew: 2005] There is not as much experience in pediatrics with modafinil (Provigil) [Murphy: 2008] and tizanidine (Zanaflex), but these medications may improve function of children with spasticity. Doses should be titrated to avoid weakness and extensive hypotonia. [Delgado: 2010]
- Injections: Botulinum toxin A (Botox) and B (Myobloc) and phenol injections are used to treat and prevent contractures that lead to tight ankles (difficulty walking) and hygiene problems (hip adduction contractures). These injections are usually combined with physical therapy, splinting, or casting to optimize impact. [Desloovere: 2007] See [Fehlings: 2010] and [Love: 2010] for international consensus articles regarding the use of botulinum injections in upper and lower extremities, respectively. Despite the frequent use of botulinum toxin in children with CP, more studies are called for by some experts to prove efficacy in walking function. [Ryll: 2011] Despite good treatment and compliance, many children with spasticity will still develop contractures, but their development may be delayed or less severe.

Surgical interventions may be used to manage the complications of spasticity or to decrease spasticity and/or dystonia:

Orthopedic surgery to manage scoliosis, hip dislocations, muscle contractures, and ankle, foot and hand deformities. See [Imrie: 2010] and [Loeters: 2010] for management of scoliosis in CP.

Spasticity management:

Baclofen pump - In some patients with severe spasticity, a small programmable pump is placed in the abdomen with a catheter going to the intrathecal space to deliver baclofen. Complications include infection, catheter breakage, and a possible increase in scoliosis. Many patients and families have been very happy with this therapy. Pumps may be implanted in children as young as three years of age. The role of a baclofen pump in treating dystonia is not well understood, but it may be of benefit. In the patient, a trial is performed by intrathecal injection of baclofen. The individual child’s response is then assessed over the subsequent 8-hour period.
Dorsal rhizotomy - Selective dorsal rhizotomy is a neurosurgical procedure performed to treat diplegia and quadriplegic CP in selected patients. Its popularity has waxed and waned over the years. It can be very helpful in selected patients when combined with post-operative rehabilitation. If the child/family and medical home are interested in dorsal rhizotomy, referral to a rehabilitation specialist and neurosurgeon is recommended to allow evaluation, discussion regarding possible risks and benefits, and consideration of alternate therapies.

Specialty Collaborations & Other Services

Pediatric Physical Medicine & Rehabilitation (see ID providers [1])

Manages and treats spasticity, evaluates use of oral medications, injections, and baclofen pump. May help with coordinating care, long-range planning, and referral management.

Pediatric Orthopedics (see ID providers [4])

Evaluates at regular intervals and treats as necessary orthopedic complications of spasticity such as tight heel cords, dislocated hips, and scoliosis. Generally, children with CP should be referred at the time of diagnosis to an orthopedic surgeon familiar with treating children with CP.

Pediatric Neurosurgery (see ID providers [2])

Places baclofen pumps. In some locations, referral will be via physical medicine and rehabilitation.

Nutrition/Growth/Bone

Since 40-60% of children with CP will experience malnutrition, careful monitoring of growth and weight gain is critical, especially in those with feeding dysfunction, even mild feeding dysfunction. [Fung: 2002] Even in children with normal weight, micronutrient status may be inadequate. [Schoendorfer: 2010] Interventions may include optimizing oral feeding, addition of oral caloric supplements, a period of NG/NJ feeding, and placement of a permanent feeding tube. The medical home should ensure that treatment of dysphagia, gastroesophageal reflux disease (GERD), delayed gastric emptying, and constipation is optimized. Assessment of nutritional status in children with CP is complex and best done by someone familiar with the nutritional issues in this population. Intervention should be tailored to the child’s needs and family-centered. See Power Packing (general) for tips on increasing calories in the child’s diet. In a small percentage of patients, excessive weight gain can make mobility difficult and make it difficult for caregivers to lift the child.

Decreased linear growth and failure for females to experience menarche are also a concern for this population. See the treatment section on maturation for more information.

Dietary Calcium and Vitamin D metabolism insufficiency, particularly in children on medications for seizures with resulting Osteoporosis and Pathologic Fractures, is of great concern in nonmobile children. Children with CP should be monitored carefully for low weight or decreasing weight gain and referred preventively to nutrition.

Specialty Collaborations & Other Services

Nutrition Assessment Services (see ID providers [1])

Evaluates growth parameters and suggests dietary changes that might be helpful. Performs a diet history for calories and nutrients. Follows skin-fold measurements, which might be a better measure than weight for height in children with CP.

Pediatric Gastroenterology (see ID providers [3])

Evaluates and manages nutritional issues, including treating associated GI conditions such as constipation and gastroesophageal reflux, which might be adding to poor weight gain. Evaluates need for, and placement of, gastrostomy tubes.

Bone Densitometry/DEXA (see ID providers [0])

DEXA scan may be used to evaluate body composition, including fat stores and bone density. DEXA should be obtained primarily when results will impact treatment decisions.

Pediatric Endocrinology (see ID providers [2])

Provides consultation regarding issues of poor linear growth not related to nutrition or issues of premature or delayed puberty. Evaluates and manages osteoporosis, which can be common in children with CP.

Respiratory

Children with CP and other chronic neurologic disorders are at risk for acute and chronic respiratory illness due to neurological and anatomical dysfunction. Recurrent pneumonias are a frequent, often unrecognized, sign of aspiration. Although pneumonia may occur as an isolated illness in any child, it should prompt consideration for further evaluation in the child with CP.

Factors contributing to pulmonary disease in children with chronic illness include recurrent pneumonia, oral motor dysfunction with chronic aspiration, chronic aspiration, gastroesophageal reflux, sleep apnea, aspiration during seizures, atelectasis/bronchiectasis, tracheomalacia, restrictive lung disease, airway hyposensitivity, ineffective cough, inadequate seating posture, and scoliosis.

Optimal management of the child with CP includes:

Minimizing pulmonary risk
Optimizing nutrition
Immunizing appropriately - influenza and pneumococcal vaccines
Ensuring good posture support in seating
Monitoring for scoliosis
Educating the family to avoid active/passive tobacco smoke

Monitor for symptoms of, evaluate, and manage associated problems as clinically indicated.

Dysphagia/aspiration
Gastroesophageal reflux
Sleep apnea/obstruction
Comorbid pulmonary conditions (e.g., asthma, allergies, BPD)

Specialty Collaborations & Other Services

Pediatric Pulmonology (see ID providers [2])

Refer to a pediatric pulmonologist for further evaluation/intervention if indicated.

Gastro-Intestinal & Bowel Function

The medical home should ensure that treatment of dysphagia, gastroesophageal reflux disease (GERD), delayed gastric emptying, and constipation is optimized.

Gastroesophageal reflux s common, although it might present as arching, irritability, or food refusal rather than vomiting. Treatment can be started empirically with evaluation and/or a referral to gastroenterology if symptoms continue. Treatment is generally initiated with a proton pump inhibitor. Treatment of reflux can be augmented by using a motility agent (low-dose erythromycin), but the clinician must monitor closely for side effects. It is unclear if H2 blocker add-on therapy for a patient already on a proton pump inhibitor provides additional benefit. A clinical trial of add-on therapy may be helpful in some patients. Alternately, consideration of checking gastric pH and optimizing PPI dosing to ensure adequate suppression might be considered. A common reason for treatment failure is inappropriate administration of a PPI (which should be on an empty stomach with feeding held for 30 minutes). Regardless, when a patient’s symptoms are not adequately controlled on a PPI and motility agent, Gastrointestinal consultation is likely warranted to aid in these treatment decisions. For full management details, see Gastroesophageal Reflux Disease.

If medical therapy is not successful or, despite optimal treatment of reflux, the child remains underweight, surgical procedures may be necessary. Nissen or other types of fundoplication may be recommended and may be performed laparoscopically, shortening hospital and overall recovery time. Many factors should be considered when deciding on Nissen fundoplication and/or gastrostomy tube placement. Gastrostomy tubes may be indicated for: poor oral intake of calories and/or fluids, swallowing difficulties, and severe reflux. If reflux is severe and aspiration is likely, many providers would recommend Nissen fundoplication with gastrostomy placement. Treat for other GI issues, such as constipation, before making these decisions.

For children who do not feed orally or who are poor surgical candidates for a Nissen, another option is moving the distal end of the feeding tube to the small intestine (i.e., GJ tube or J tube). See Feeding Tubes & Gastrostomies in Children for more details.

Constipation is a problem in many, if not most, children with CP due to diet, lack of mobility, and spasticity. Constipation is easier to treat if caught early, and bowel history should be part of every medical home visit. Dietary management with additions of juices and fiber might be all that is necessary, but many children will need daily treatment with laxatives (polyethylene glycol 3350 (Miralax and Glycolax) and senna (Senokot). See Constipation for clean-out and management details.

Specialty Collaborations & Other Services

Pediatric Gastroenterology (see ID providers [3])

Evaluates and manages general issues such as constipation, reflux, gastrostomy tube placement, and refers for Nissen fundoplication and gastrostomy tube placement when necessary.

General Pediatric Surgery (see ID providers [1])

Places gastrostomy tubes and Nissen fundoplications.

Nose/Throat/Mouth/Swallowing

Swallowing dysfunction. Up to 90% of children with CP have clinically significant swallowing dysfunction, with severe impairments noted in one-third. Swallowing dysfunction may result in drooling, salivary pooling (with resultant malodorous breath and increased risk of dental caries), malnutrition, and/or pulmonary aspiration. A speech therapist (or in some locations, an occupational therapist) can evaluate swallowing function and safety, determine if interventions (e.g., speech therapy, special feeding techniques, improved feeding position) might lead to improvements in function, and determine the safest and most efficient textures for eating. In some cases, the therapist may suggest a fluoroscopic video swallow study (also called a modified barium or cookie swallow). If dysphagia is determined to be a problem, diets using pureed foods and thickened liquids or alternative feeding methods may be necessary to prevent aspiration. See Power Packing (general) and Thickening Liquids & Pureeing Foods (general).

Children with significant swallowing problems may need gastrostomy tube placement to allow efficient and safe liquid and/or food delivery. A gastrostomy tube may also be necessary in those children with CP and severe failure to thrive, even if aspiration is not an obvious problem. In some children, placement of a feeding tube might be thought of as a temporary intervention so that the family may focus on the child and the quality of his/her eating without constantly worrying about the number of calories the child has received. Treatment with a Nissen fundoplication may be important for the child with GERD who has limited capacity to protect their airway. Also, see Feeding Tubes & Gastrostomies in Children and Aspiration/Chronic Lung Disease (general) for more information.

Drooling. Many parents will choose not to treat drooling due to concerns about the side effects of medication and surgery, but drooling in the socially aware older child with CP can be very embarrassing to the child and create a social barrier. See Drooling in Children with Special Health Care Needs and [Potulska: 2005] for resources and information about specific treatments. Also, see [Love: 2010] for international consensus recommendations regarding the use of botulinum toxin for drooling.

Specialty Collaborations & Other Services

Developmental - Behavioral Pediatrics (see ID providers [2])

Coordinates evaluation and management of feeding concerns.

Pediatric Otolaryngology (see ID providers [4])

Evaluates and treats problems with swallowing (submucosal cleft, etc.) and drooling.

Pediatric Gastroenterology (see ID providers [3])

Evaluates nutritional and swallowing issues and the placement of gastrostomy tubes.

General Pediatric Surgery (see ID providers [1])

Performs gastrostomy (and other) tube placements as well as Nissen fundoplications when necessary.

Neurology

Seizures. Children with CP may have many types of seizures, including generalized tonic-clonic, partial complex, and atypical absence. Most seizures in children with CP will be symptomatic, i.e., not subclinical. Seizure treatment will depend on seizure type and side effects of medications. Twenty to forty percent of children with CP have a seizure disorder; 66% of children with hemiplegic CP, 43% of children with quadriplegia, and 16% of children with diplegia have seizures. Epilepsy is often severe and difficult to control, particularly in children with associated intellectual disability. Seizures/Epilepsy has treatment information.

Osteoporosis. Children with CP on some specific seizure medications may be at particular risk of osteoporosis. Optimizing bone health is critical, including ensuring optimal vitamin D levels, adequate calcium intake, and, if possible, a weight-bearing program. Osteoporosis and Pathologic Fractures provides further management information.

Hydrocephalus. If the head circumference is crossing percentile lines or there is a history of hydrocephalus and/or VP shunts, referral to neurosurgery should be considered. The primary care provider should help the family understand when the child with a shunt should be seen emergently, such as with new headaches and vomiting, or in the event of a persistent behavioral or mood change from baseline in the absence of a febrile illness.

Specialty Collaborations & Other Services

Pediatric Neurology (see ID providers [1])

Confirms diagnosis of CP and manages seizures if present.

Pediatric Neurosurgery (see ID providers [2])

Evaluates and treats hydrocephalus— usually with concurrent management by a neurosurgeon and the medical home.

Sleep

Many children with CP have difficulty sleeping, impacting the child’s emotional health and function as well as that of the entire family. The reasons for sleep problems are diverse and include obstructive sleep apnea, pain and discomfort, seizures, separation anxiety, learned behaviors, and restless leg syndrome. Behavioral Techniques to Improve Sleep may be all that is necessary. Sleep Medications that might be helpful include diphenhydramine, melatonin, low-dose trazodone, clonidine, Remeron, gabapentin, and valium. For details of behavioral management, see . In complicated scenarios, referral to a Pediatric Sleep Clinics (see ID providers [0]) and overnight Sleep Studies/Polysomnography (see ID providers [6]) should be considered.

Specialty Collaborations & Other Services

Sleep Studies/Polysomnography (see ID providers [6])

Evaluates the many possible causes of sleep disorders in children with CP and recommends appropriate treatments.

Pediatric Otolaryngology (see ID providers [4])

Performs tonsillectomy and adenoidectomy to help alleviate obstructive sleep apnea .

Maturation/Sexual/Reproductive

Most children with CP will mature typically, but a few may have early or delayed puberty. Menses can be difficult to manage in some adolescent girls with CP and difficulties may arise in managing hygiene by the adolescent or family. Dysphoria/irritability/cramping or heavy periods may occur, as in any adolescent population, and some girls experience exacerbation of their seizure disorder with the menstrual cycle. Depo-Provera is often used to suppress menstruation but may not provide adequate suppression and may be associated with decreased bone mineralization in adolescents. [Walsh: 2008] [Tolaymat: 2007] [Kaunitz: 2008] Oral contraceptive preparations may also be used (skipping placebos) successfully in many adolescents, although spotting often occurs over the initial 6-month period. Intrauterine devices that release small amounts of progesterone locally may also be an option, although the response is less predictable. In rare cases, removal of the uterus might be considered, but this requires going through the legal process of obtaining court authorization in many states.

Disability and chronic health conditions may result in primary and secondary sexual dysfunction. Fears can include concerns about sexual exploitation in this population and body image concerns on the part of the adolescents. When surveyed, more than 90% of young adults with CP indicated a desire for more information about sexual function. Sexuality needs to be discussed with adolescents and their parents to overcome often-present assumptions such as:

Teens with disabilities do not need this information.
Sex education that is specific to people with disabilities does not exist or is limited.
Motor impairments may make sexual function difficult, e.g., condom use.
Presence of intellectual impairment might complicate the imparting and understanding of sex education material.

For a full discussion, Sexuality & Children with Disabilities.

Specialty Collaborations & Other Services

Gynecology: Pediatric/Adolescent; Special Needs (see ID providers [0])

Provides reproductive health care for girls with disabilities and can assess issues with delayed pubertal development.

Genito-Urinary

Approximately 25% of children with CP will have primary urinary incontinence [Odding: 2006], and in some, this will be due to a spastic bladder. Still, studies have shown that toilet training can be very successful in children with CP, including those with cognitive impairment. Toilet Training for CYSHCN has more information about obtaining bladder continence.

Routine evaluation of the urinary tract is not indicated in children with CP. However, some children with CP may have a neurogenic bladder resulting in difficulty attaining continence or urinary tract infections. Studies have suggested that these children have excellent responses to treatment, with the majority achieving continence. Urology evaluation should be considered in the following situations:

Patients who have had a UTI
Persistent daytime incontinence despite a good training approach (toilet training). With the appropriate approach, even children with moderately severe cognitive and motor impairments can achieve continence.
Changes in bladder function, particularly if after intervention for spasticity with a dorsal rhizotomy
In children with any of the following symptoms:
- Dribbling
- High voiding frequency or urgency
- Difficulty initiating a void
- Stress incontinence
- Persistent nighttime wetting after a period of daytime continence. Note: an empiric trial of ditropan might be considered in those with symptoms of bladder spasticity.

Urology consultation may be considered. Urology evaluation might include:

Urodynamics (cystometrogram/CMG)
Renal ultrasound
VCUG (if there has been a UTI)
Urinalysis

Specialty Collaborations & Other Services

Pediatric Urology (see ID providers [1])

Evaluates and treats incontinence.

Developmental - Behavioral Pediatrics (see ID providers [2])

Designs a toilet training program for children with CP and incontinence.

Eyes/Vision

Since 40%-75% of children with CP have visual problems, assessment of vision and interventions for visual impairment are important. [Black: 1980] Problems may include:

Strabismus - More than half of children with CP exhibit strabismus, a condition where the muscles that control eye movement are out of balance, causing the eyes to be misaligned. The misalignment of the eyes causes double vision, which the brain stops by turning off vision in one eye. In children, this change can be permanent if the double vision is not corrected in the early years.
Acuity loss - Acuity loss may be present by itself or with cortical visual impairment.
Field defects - Field defects, especially homonymous hemianopsia and variants, are seen in hemiplegic CP.
Processing disorders (e.g., visual perceptual disorders, cortical vision impairment)

Cortical vision impairment (CVI), caused by abnormal cortical processing of visual information, is very common in children with CP. It can be hard to detect as the structure of the globe is normal, and children with CVI will exhibit normal pupillary reactions to light and normal eye movements, yet not respond to visual information. It is caused by hypoxia ischemia, developmental brain defects, and various insults to the brain such as infection and trauma. There is often substantial improvement over time.
Children with CP should have at least 1 visit with a pediatric ophthalmologist for an evaluation, even if no problems are reported by parents or observed in the medical home visit because visual problems in the first few years of life may lead to permanent but avoidable vision loss. At the first referral, follow-up should be specified by the consulting pediatric ophthalmologist.

Children with dual sensory impairment have a disability that is different and more complicated than the sum of vision and hearing impairments and may qualify for other special services. In children younger than 3 years with hearing and/or vision deficits, a referral should also be made to the School for the Deaf and Blind, which coordinates home-based parent education and infant stimulation. Deafblindinfo.org provides answers to frequently asked questions and lists resources by locations.

Specialty Collaborations & Other Services

Pediatric Ophthalmology (see ID providers [9])

Provides early intervention of potentially reversible vision problems.

Vision Screening (see ID providers [165])

Many states have Schools for the Blind where vision services for that state originate. Services for children under 3 are sometimes offered in home, and services for school-aged children are offered through the school districts.

Special Education/Schools (see ID providers [8])

Provides the necessary learning services when a child has dual sensory impairment.

Ears/Hearing

Even if the newborn hearing screen is passed, children with CP may have later-onset hearing loss (e.g., cytomegalovirus) and should be evaluated if there is clinical suspicion of this. Refer children under 3 years old with auditory problems to specific, hearing-impaired, early-childhood programs. If school-aged, they are served through their school district. Children with both vision and hearing impairments may be eligible for programs for children with dual sensory impairments. In children younger than 3 years with hearing and/or vision deficits, a referral should also be made to the School for the Deaf and Blind, which coordinates home-based parent education and infant stimulation. Hearing evaluations are sometimes available through the school district at no charge or through the state’s Department of Health on a sliding fee basis. Private providers are also an option, although the audiologist should be familiar with issues seen in children with disabilities.

Specialty Collaborations & Other Services

Pediatric Otolaryngology (see ID providers [4])

Refer for children with CP and hearing loss, especially if they have frequent ear infections, middle ear fluid, drooling and/or swallowing problems should be referred to otolaryngology.

Audiology (see ID providers [27])

Hearing evaluations are sometimes available through the school district at no charge or through the state’s Department of Health on a sliding fee basis. Private providers are also an option, although the audiologist should be familiar with issues seen in children with disabilities.

Special Education/Schools (see ID providers [8])

Provides the necessary learning services when a child has dual sensory impairment.

Learning/Education/Schools

Children with CP usually have an individualized education plan (IEP) and a school health plan. The latter should be reviewed for accuracy. The medical home may need to oversee school services for children with CP, as services vary greatly between and within states. Although physical and occupational therapy may be provided through the school, in some areas, this will be on a limited basis only (as needed for functioning in school, not as prescribed medically), whereas in other locations, these therapies may be more available. Access to communication devices, if necessary, occurs in the school setting. Each district has an Augmentative Team, which can assess the child’s communication abilities and provide means of augmentative communication ranging from simple switches to sophisticated communication devices. An evaluation by the Augmentative Team should be requested from the child’s speech therapist at school or as part of an initial evaluation and repeated when indicated. See Augmentative Communication (AAC) and Inclusion Models (general).

Specialty Collaborations & Other Services

Head Start/Early Head Start (see ID providers [72])

Comprehensive child development program designed to meet the educational, emotional, social, and health needs of children with special needs.

Educational Testing/Assessment (see ID providers [113])

Assists with neuropsychological evaluations, consultation, therapy, and school-provider collaboration.

Recreation & Leisure

For all children, play serves important roles in learning, leisure, and social interaction. Parents may need information on the characteristics of toys that would best match their child’s abilities, interests, and learning, as well as sources for adapted toys and instructions for adapting standard toys (Adaptive Play and Assistive Technology).

Many children with disabilities want to participate in leisure and sports activities. The need for adapted physical education and/or supports or social structuring on the playground should be included in the child’s IEP. A physical therapy consultation can be helpful either in the school situation or for home adaptations (e.g., the child who wants a bike for a present but the parents don’t know what to purchase, or the child is interested in obtaining a sporting wheelchair).

Community-based athletic programs are an option for many children if the family, child, and program are given adequate support. Not only can athletic activities enhance psychological health, but as the child grows, they can help counter a drop off in gross motor function in part due to de-conditioning. Success depends upon appropriate activities, adapted equipment, adapted rules for the special needs child when appropriate, and support from peers, other parents, and coaches.

Transitions

A transition often refers to the move from pediatric health care and the educational environment to adult health care and the occupational environment. For some individuals, transition may also include moving from the parent’s home to independent or supported living. Although the school system will serve children with CP in special education until they turn age 22, planning for life after school should be started in early adolescence, including consideration of vocational training and where the child will live (by themselves, in a group home, etc.). Foster successful transition skills for children of all abilities from the very beginning through activities, which give the message of expectation, responsibility, and value.

If necessary, plan for guardianship. This can be a lengthy process that includes psychological and medical evaluations of the child and involvement of a lawyer with expertise in this area. Guardianship should be applied for before the child reaches 18 years of age. In some states, children become eligible for Medicaid based on their own financial resources and ability to work at age 18. They may qualify for resources with the Division of Services for People with Disabilities (DSPD) for which they had been ineligible (based on family income) before their 18th birthday. Resources that provide helpful information and tools for planning transitions include:

Guardianship/Estate Planning: The basics of obtaining guardianship and estate planning.
Estate Planning Trusts and Accounts: Information and resources for planning for the financial security of a child with special needs.
Navigating Transitions with Your Child : Information about many aspects of transition including guardianship, living arrangements, and more.

Transition Issues has medical role recommendations to help promote continuity during periods of transition.

Complementary & Alternative Medicine

Many available therapies have had limited evaluation. Particularly popular (and sometimes expensive) therapies have included hyperbaric oxygen, patterning, cranial-sacral therapy, stem cell administration, and nutritional supplements. It is impossible to provide up-to-date information on each therapy. Most importantly, the family has a framework to use when considering each therapy (including traditional therapies) and collaborates with the child’s medical home and/or specialists to incorporate choice therapies into the child’s overall treatment plan. See Integrative Medicine for CYSHCN and [Novak: 2013], which includes a chart of interventions (including CAM) and information on their effectiveness based on evidence levels.

Constipation
Gastroesophageal Reflux Disease
Osteoporosis and Pathologic Fractures
Drooling in Children with Special Health Care Needs
Sleep Issues
Sleep Medications
Working with Insurance Companies

Learning/Education/Schools

Inclusion Models

Nutrition/Growth/Bone

Power Packing
Thickening Liquids & Pureeing Foods

Respiratory

Aspiration/Chronic Lung Disease

On the Web

Information on Spasticity, Choreoathetosis, and Other Movement Disorders
Information about movement disorders including ataxia, bradykinesia, chorea and choreoathetosis, clonus, dystonia, myoclonus, restless legs syndrome, rigidity, spasticity, tics and tremor; International Parkinson and Movement Disorder Society.

Helpful Articles

Chin EM, Gwynn HE, Robinson S, Hoon AH Jr.
Principles of Medical and Surgical Treatment of Cerebral Palsy.
Neurol Clin. 2020;38(2):397-416. PubMed abstract / Full Text

Deon LL, Gaebler-Spira D.
Assessment and treatment of movement disorders in children with cerebral palsy.
Orthop Clin North Am. 2010;41(4):507-17. PubMed abstract
Helpful information on distinguishing spasticity, rigidity, and dystonia in children with cerebral palsy.

Novak I, McIntyre S, Morgan C, Campbell L, Dark L, Morton N, Stumbles E, Wilson SA, Goldsmith S.
A systematic review of interventions for children with cerebral palsy: state of the evidence.
Dev Med Child Neurol. 2013;55(10):885-910. PubMed abstract / Full Text
Describes systematically the best available intervention evidence for children with cerebral palsy.

Sadowska M, Sarecka-Hujar B, Kopyta I.
Cerebral Palsy: Current Opinions on Definition, Epidemiology, Risk Factors, Classification and Treatment Options.
Neuropsychiatr Dis Treat. 2020;16:1505-1518. PubMed abstract / Full Text

Assessment Tools/Scales

Musculoskeletal Exam for Common Orthopedic Complications ( PDF Document 579 KB)
A concise, easy-to-use tool to document the limitations of a child's musculoskeletal abilities and exam; Medical Home Portal.

Questionnaires/Diaries/Data Tools

Tracking Form for Children With Cerebral Palsy (AAP)
Includes Area, Status, and Provider columns for tracking medical conditions, activities, and participation (Table 3); from Providing a Primary Care Medical Home for Children and Youth With Cerebral Palsy by the American Academy of Pediatrics.

Cerebral Palsy

Information on the Web

CP Information (MedlinePlus)
Information for families that includes description, frequency, causes, inheritance, other names, and additional resources; from the National Library of Medicine.

Cerebral Palsy Information Page (NINDS)
Information about cerebral palsy that includes latest research; National Institute of Neurological Disorders and Stroke.

The National Lekotek Center
A nonprofit organization dedicated to making play accessible for children with disabilities.

Cerebral Palsy Guidance
A website offering guidance and assistance to parents of a child with cerebral palsy. Topics include Cerebral Palsy, Financial Assistance, Living with Cerebral Palsy.

National & Local Support

United Cerebral Palsy
National non-profit organization that provides information on a variety of topics including advocacy, conferences, insurance, sexuality, policy, and other items for the public and providers.

Studies/Registries

CP Clinical Trials (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

CP Research Trials (CenterWatch)

CP Registry

Services for Patients & Families in Idaho (ID)

Service Categories	ID	NW		MT	NM	NV	RI
Audiology	27	2	49	7	7	25	52
Bone Densitometry/DEXA
Developmental - Behavioral Pediatrics	2	1	8	1	2	11	9
Early Intervention for Children with Disabilities/Delays	149	3	27	45	32	14	54
Educational Testing/Assessment	113			6	9		8
General Pediatric Surgery	1		2		5	4	2
Gynecology: Pediatric/Adolescent; Special Needs			3			3	16
Head Start/Early Head Start	72	1	98	146	56	15	41
Neuropsychiatry/Neuropsychology	3		3		5	6	10
Nutrition Assessment Services	1		1		5	2	8
Pediatric Dentistry	60	2	54	2	36	39	60
Pediatric Endocrinology	2	1	14	1	6	13	3
Pediatric Gastroenterology	3	1	15	1	6	19	4
Pediatric Genetics	3	1	7	4	4	4	6
Pediatric Neurology	1		15		5	15	5
Pediatric Neurosurgery	2	1	2	1	4	3	3
Pediatric Ophthalmology	9	1	14	1	6	8	6
Pediatric Orthopedics	4	2	16	3	7	12	18
Pediatric Otolaryngology	4	1	5	1	5	6	9
Pediatric Physical Medicine & Rehabilitation	1	1	4	1	1	2	13
Pediatric Pulmonology	2		7		4	9	4
Pediatric Sleep Clinics						1
Pediatric Urology	1		5		13	1	2
Sleep Studies/Polysomnography	6		5			1	7
Special Education/Schools	8	3	86	18	16	42	53
Vision Screening	165	3	14	6	16	6	24

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Authors & Reviewers

Initial publication: May 2011; last update/revision: August 2021

Current Authors and Reviewers:

Author:	Lynne M. Kerr, MD, PhD
Reviewer:	Lisa Samson-Fang, MD

Authoring history

2014: update: Lynne M. Kerr, MD, PhD^A; Lisa Samson-Fang, MD^R

2011: first version: Lynne M. Kerr, MD, PhD^A; Lisa Samson-Fang, MD^R

^AAuthor; ^CAContributing Author; ^SASenior Author; ^RReviewer

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Cerebral palsy: not always what it seems.
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Ashwal S, Russman BS, Blasco PA, Miller G, Sandler A, Shevell M, Stevenson R.
Practice parameter: diagnostic assessment of the child with cerebral palsy: report of the Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society.
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Evidence-based summary of indicated diagnostic evaluation for children with cerebral palsy.

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Delgado MR, Hirtz D, Aisen M, Ashwal S, Fehlings DL, McLaughlin J, Morrison LA, Shrader MW, Tilton A, Vargus-Adams J.
Practice parameter: pharmacologic treatment of spasticity in children and adolescents with cerebral palsy (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society.
Neurology. 2010;74(4):336-43. PubMed abstract / Full Text

Deon LL, Gaebler-Spira D.
Assessment and treatment of movement disorders in children with cerebral palsy.
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Helpful information on distinguishing spasticity, rigidity, and dystonia in children with cerebral palsy.

Desloovere K, Molenaers G, De Cat J, Pauwels P, Van Campenhout A, Ortibus E, Fabry G, De Cock P.
Motor function following multilevel botulinum toxin type A treatment in children with cerebral palsy.
Dev Med Child Neurol. 2007;49(1):56-61. PubMed abstract

Distelmaier F, Richter-Werkle R, Schaper J, Messing-Juenger M, Mayatepek E, Rosenbaum T.
"How much brain is really necessary?" A case of complex cerebral malformation and its clinical course.
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Fehlings D, Novak I, Berweck S, Hoare B, Stott NS, Russo RN.
Botulinum toxin assessment, intervention and follow-up for paediatric upper limb hypertonicity: international consensus statement.
Eur J Neurol. 2010;17 Suppl 2:38-56. PubMed abstract

Fung EB, Samson-Fang L, Stallings VA, Conaway M, Liptak G, Henderson RC, Worley G, O'Donnell M, Calvert R, Rosenbaum P, Chumlea W, Stevenson RD.
Feeding dysfunction is associated with poor growth and health status in children with cerebral palsy.
J Am Diet Assoc. 2002;102(3):361-73. PubMed abstract

Himmelmann K, Hagberg G, Beckung E, Hagberg B, Uvebrant P.
The changing panorama of cerebral palsy in Sweden. IX. Prevalence and origin in the birth-year period 1995-1998.
Acta Paediatr. 2005;94(3):287-94. PubMed abstract

Hoon AH Jr, Reinhardt EM, Kelley RI, Breiter SN, Morton DH, Naidu SB, Johnston MV.
Brain magnetic resonance imaging in suspected extrapyramidal cerebral palsy: observations in distinguishing genetic-metabolic from acquired causes.
J Pediatr. 1997;131(2):240-5. PubMed abstract
Case series of children with motor disorders in which the MRI provided diagnostic clues.

Imrie MN, Yaszay B.
Management of spinal deformity in cerebral palsy.
Orthop Clin North Am. 2010;41(4):531-47. PubMed abstract

Kaunitz AM, Arias R, McClung M.
Bone density recovery after depot medroxyprogesterone acetate injectable contraception use.
Contraception. 2008;77(2):67-76. PubMed abstract

Loeters MJ, Maathuis CG, Hadders-Algra M.
Risk factors for emergence and progression of scoliosis in children with severe cerebral palsy: a systematic review.
Dev Med Child Neurol. 2010;52(7):605-11. PubMed abstract

Love SC, Novak I, Kentish M, Desloovere K, Heinen F, Molenaers G, O'Flaherty S, Graham HK.
Botulinum toxin assessment, intervention and after-care for lower limb spasticity in children with cerebral palsy: international consensus statement.
Eur J Neurol. 2010;17 Suppl 2:9-37. PubMed abstract

Marcì M, Ajovalasit P.
Medium-Chain Acyl-CoA Dehydrogenase Deficiency in an Infant with Dilated Cardiomyopathy.
Cardiol Res Pract. 2009;2009:281389. PubMed abstract / Full Text

Mathew A, Mathew MC.
Bedtime diazepam enhances well-being in children with spastic cerebral palsy.
Pediatr Rehabil. 2005;8(1):63-6. PubMed abstract

Moreno-De-Luca A, Millan F, Pesacreta DR, Elloumi HZ, Oetjens MT, Teigen C, Wain KE, Scuffins J, Myers SM, Torene RI, Gainullin VG, Arvai K, Kirchner HL, Ledbetter DH, Retterer K, Martin CL.
Molecular Diagnostic Yield of Exome Sequencing in Patients With Cerebral Palsy.
JAMA. 2021;325(5):467-475. PubMed abstract / Full Text

Murphy AM, Milo-Manson G, Best A, Campbell KA, Fehlings D.
Impact of modafinil on spasticity reduction and quality of life in children with CP.
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Novak I, McIntyre S, Morgan C, Campbell L, Dark L, Morton N, Stumbles E, Wilson SA, Goldsmith S.
A systematic review of interventions for children with cerebral palsy: state of the evidence.
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Describes systematically the best available intervention evidence for children with cerebral palsy.

Novak I, Morgan C, Fahey M, Finch-Edmondson M, Galea C, Hines A, Langdon K, Namara MM, Paton MC, Popat H, Shore B, Khamis A, Stanton E, Finemore OP, Tricks A, Te Velde A, Dark L, Morton N, Badawi N.
State of the Evidence Traffic Lights 2019: Systematic Review of Interventions for Preventing and Treating Children with Cerebral Palsy.
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The epidemiology of cerebral palsy: incidence, impairments and risk factors.
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Odding, E, Roebroeck, ME, and Stam, HJ.
The Epidemiology of cerebral palsy: incidence, impairments, and risk factors.
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South Africa Journal of Child Health. 2007;1(2):74-78. / Full Text

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