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Cerebral Palsy

Description

Other Names

Static encephalopathy

Diagnosis Coding

ICD-9

343, cerebral palsy

ICD-10

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 provides more information.

Description

Cerebral Palsy (CP) is a general term that refers to a group of non-progressive disorders of movement and posture resulting from injury or malformation of the developing central nervous system. 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.

Most CP is congenital, although it may not be detected for months or years. [Marcì: 2009] CP also 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
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]

The diagnosis of CP may be straightforward and the etiology clear; however, in approximately 19% of children with CP, the cause may not be identifiable. [Hagberg: 1989] When children have signs 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. Management of the child with CP requires coordination of multidisciplinary team efforts to address the multiple medical, social, psychological, and educational needs.

Prevalence

According to the Center for Disease Control and Prevention (CDC), every year approximately 10,000 babies born in the United States are identified as having CP. The prevalence is 2-3 children per 1,000 over the age of three. [Ashwal: 2004] Males are slightly more likely to have CP than females, and CP is more common in families with lower socioeconomic status. [van: 2007] In a recent meta-analysis, the prevalence of CP was found to be 2.11 per 1000, similar to the prevalence given by the CDC. There is no evidence that the incidence of CP is changing, despite the increased survival of infants at risk for having CP. [Oskoui: 2013]

Genetics

Though rare, sometimes children with CP have an underlying genetic disorder (e.g., in Miller-Dieker syndrome, severe lissencephaly due to a deletion in chromosome 17p13.3, [Kato: 2003] or dopa-responsive dystonia, which can present as a delay in walking and/or stiff gait [Cheyette: 2008]). Congenital neurologic disorders (e.g., schizencephaly, hydranencephaly) may be initially misdiagnosed as CP. A large controlled study is currently being conducted. [Gibson: 2008]

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).)

Roles Of The Medical Home

A child with CP needs a medical home for well-child and chronic-care visits where progress and problems can be reviewed and proactively managed. In addition, a child with CP often needs access to a large number of subspecialists and 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 to avoid duplication of services or unnecessary appointments.

Resources that can help with primary care include:

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

Helpful Articles

PubMed Search on cerebral palsy: review articles for the last 2 years

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
Describes systematically the best available intervention evidence for children with cerebral palsy.

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.

Medline Plus.
Cerebral palsy.
National Institutes of Health; (2014) http://medlineplus.nlm.nih.gov/medlineplus/cerebralpalsy.html. Accessed on June 2014.
Information regarding the care of a child with CP, including links to many other sources of information.

Clinical Assessment

Overview

The initial assessment of a child for possible 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, or the child who had significant hypoxic-ischemic encephalopathy in the newborn period. In other cases, the diagnosis may require prolonged observation and become a diagnosis of exclusion. For roughly 20% of children with developmental delay and non-progressive motor involvement, a clear diagnosis cannot be determined. It is important to rule out an underlying genetic syndrome or a progressive neurological or metabolic condition that might occur in subsequent pregnancies.

For guidelines regarding the diagnostic evaluation of children with CP of unknown etiology, and an evaluation algorithm, see Practice Parameter: Diagnostic Assessment of the Child with Cerebral Palsy(PDF Document 103 KB).

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 pre- or perinatal causes of CP can be identified between 4 and 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 who were 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)
Some aspects of the condition may become more apparent over time (e.g., intellectual disability, extent of increased tone, orthopedic sequelae, seizures), although the brain injury itself is not progressive.

Diagnostic Criteria

Basic diagnostic criteria include the presence of a non-progressive neurologic 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: Percentages described below are from [Himmelmann: 2005]:

Spastic CP: 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 often 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 problems with balance and depth perception, and may often overlap with other categories.

Mixed CP: A term used when a child has features of more than one type. Examples include the combination of low truncal tone and poor head control and seating posture 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 in CP. [Hoon: 1997] In those 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.

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, which 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 may present early in life as CP. The absence of reflexes, bowel and bladder dysfunction, and muscle weakness (sometimes difficult to differentiate from low tone) should distinguish these.
Slowly Progressive Disorders Sometimes Misdiagnosed as CP, adapted from [Fenichel: 2005], provides further details.

Comorbid Conditions

Associated conditions are common, especially in those children with a more severely affected motor exam, and should be considered during the CP evaluation.
Associated Condition Further Information
Intellectual disability (>40%) - With a higher
percentage in those children with quadriparesis
[Christensen: 2014]
Intellectual Disability (Mental Retardation)
Epilepsy (41%) - Co-occurring epilepsy frequency
was highest among children with CP who had
limited or no waking ability. [Christensen: 2014]
Seizures/Epilepsy
Hydrocephalus - Some children will have hydrocephalus,
either as the cause of 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.
Hydrocephalus and VP Shunts
Vision impairment (>15%) - Includes strabismus, myopia,
cortical blindness and in children with hemiplegia a
homonymous visual field defect [Christensen: 2014]
Visual Impairment
Hearing problems Hearing Loss and Deafness
Drooling/swallowing problems Drooling
Incontinence, constipation - Approximately 25%
of children with CP have primary urinary
incontinence [Odding: 2006] and constipation
is very common.
Bowel Management Algorithm
Learning problems - Even in children with normal
intelligence, such as in children 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.
Specific Learning Disability (SLD) and ADHD

Attention Deficit Hyperactivity Disorder (ADHD)
Speech/language deficit Normal Pattern of Speech Development

Pearls & Alerts

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

New problems could include frequent seizures interfering with concentration or other abilities. (About 40% of children with CP have seizures; clinicians should ask about seizure activity.)

Consider (or re-consider) the diagnosis

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. [Hoon: 1997] If there is any question about the diagnosis, refer the child to neurology or genetics.

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 Tools (dbpeds.org).

History & Examination

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).

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, the family of the child with CP should be asked to gather more information.

Pregnancy Or 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.

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, grasp objects, dress self, 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? What is the child's usual calcium intake? The Medical Home Portal’s Nutrition and Growth in Children with CP discusses evaluation challenges and gives assessment tips. The Feeding Tube Issues (general) page lists indications for use of feeding tube and family support tips.

GI: Does the child have constipation and is he/she toilet trained? Does the child have problems that suggest gastroesophageal reflux disease (GERD)? The Medical Home Portal’s Constipation Treatment (general) page discusses constipation management, clean out procedures, and maintenance medications. Toilet Training (general) 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?

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? (The Seizures/Epilepsy module provides diagnosis and management information.) 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
: Does the child have normal vision and hearing? 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? The Medical Home Portal’s Musculoskeletal Exam for Common Orthopedic Complications of CP(PDF Document 81 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?

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

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).

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?

Physical Exam

General

Assess general appearance and interaction of the child with the environment. 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 who were born prematurely may need to be plotted on preterm 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; a HC crossing percentile lines in the upward direction may signal hydrocephalus whereas a HC crossing percentile lines in the downward direction may reflect microcephaly. See Nutrition and Growth in Children with CP (Medical Home Portal) 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 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.

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 keeps his/her legs extended much of the time.

New focal findings might signify a progressive course; evaluate for increasing spasticity or dystonia that might need new therapeutic intervention. The "Medical History/Mobility/ADLs" section, above, lists questions that may be helpful for evaluating changes.

Testing

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. The Visual Impairment issue page provides further detail about vision impairment and CP.

Hearing screening should be performed with referral for audiologic evaluation if problems are suspected. Hearing deficits are common in children with CP. Hearing Loss and Deafness (Medical Home Portal) provides diagnosis and management information.

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 and likely varies 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. (Calcium and Vitamin D (general) provides more information.) 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 is usually performed as part of the initial diagnostic evaluation in a child with suspected CP.

Although frequently requiring sedation, the brain MRI is often the best choice for imaging when looking for an etiology. Imaging around 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 subdurals.

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 so slowly progressive and that they mimic CP. Imaging does not need to be performed after the initial diagnosis unless a new clinical question arises (e.g., a regression in abilities). Many brain malformations are known to be associated with genetic and or metabolic conditions (e.g., lissencephaly-Miller Dieker syndrome and Zellweger syndrome) and, if found, should trigger a referral to genetics. [Ashwal: 2004] [Lequin: 1999] Several excellent neuroradiology texts offer more information regarding neuroimaging abnormalities in CP: [Ball: 1997], [Barkovich: 2005], and [Osborn: 1994].

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 child's 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 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 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 over time 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 three due to lack of normative data. Implanted hardware (e.g., spinal rods and baclofen pumps) interfere with DEXA reliability

Sleep study - A 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) - An EEG is warranted if clinical evidence of a seizure disorder exists. 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 video EEG may be helpful in sorting this out. See the Seizures/Epilepsy module for more information.

Subspecialist Collaborations & Other Resources

Pediatric Neurology (see Services below for relevant providers)

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 Services below for relevant providers)

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

Developmental Pediatrics (see Services below for relevant providers)

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

Pediatric Physical Medicine & Rehab (see Services below for relevant providers)

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 Services below for relevant providers)

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 Services below for relevant providers)

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

Neuropsychology (see Services below for relevant providers)

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 Services below for relevant providers)

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 Services below for relevant providers)

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 Services below for relevant providers)

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

Pediatric Dentistry (see Services below for relevant providers)

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 Services below for relevant providers)

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

Pediatric Neurosurgery (see Services below for relevant providers)

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

Treatment & Management

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

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 herbal treatments, 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's Education Services (801-662-4914) may be helpful for coordinating the return to school after being discharged from the hospital. LINCS (801-281-4425) can assist with during the IEP process.

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. See Deaf/blind information; dual sensory impairment and Additional info and links - deafblindedness.

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.

Systems

Development (general)

Developmental delays often trigger the evaluation for CP. Even if the child is only a few months old and/or if 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. See Early Developmental Intervention Programmes Post-Hospital Discharge to Prevent Motor and Cognitive Impairments in Preterm Infants for further resources and information.

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, and hearing services and adaptive equipment if relevant to educational goals.

Subspecialist Collaborations & Other Resources

Early Intervention Programs (see Services below for relevant providers)

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 & Rehab (see Services below for relevant providers)

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 by him/herself, 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]
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 discussions regarding the 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 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. See Baclofen Pump Information for more information.
  • 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.

Subspecialist Collaborations & Other Resources

Pediatric Physical Medicine & Rehab (see Services below for relevant providers)

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 Services below for relevant providers)

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 Services below for relevant providers)

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 Nutrition and Growth in Children with CP. Also, see Power Packing (general) for information 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 non-mobile children. See Fractures in Patients with Cerebral Palsy, Osteopenia Pathologic Fractures (general), and Calcium and Vitamin D (general) for more information.

Evaluation and Treatment/Management

Children with CP should be monitored carefully for low weight or decreasing weight gain and referred preventively to nutrition.

Subspecialist Collaborations & Other Resources

Nutrition/Dietary (see Services below for relevant providers)

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 Services below for relevant providers)

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 Services below for relevant providers)

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 Services below for relevant providers)

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 disorders are at risk for acute and chronic respiratory illness due to neurological and anatomical dysfunction. Pneumonia or 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 aspiration, chronic aspiration, gastroesophageal reflux, sleep apnea, aspiration during seizures, atelectasis/bronchiectasis, tracheomalacia, restrictive lung disease, airway hyposensitivity and ineffective cough, and 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)
Refer to a pediatric pulmonologist for further evaluation/intervention if indicated.

Subspecialist Collaborations & Other Resources

Pediatric Pulmonology (see Services below for relevant providers)

Assists when pulmonary problems are suspected.

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 is 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 the use of a motility agent (metoclopramide or low dose erythromycin), but the clinician must monitor closely for side effects (particularly irritability or dystonia with metoclopramide). It is unclear if H2 blocker add-on therapy for a patient already on a proton pump inhibitor and mobility agent 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 insure adequate suppression might be considered. 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.

If medical therapy is not successful or, despite optimal treatment of reflux, the child remains underweight, surgical procedures may be necessary. Nissen or other type 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, another option is moving the distal end of the feeding tube to the small intestine (i.e., GJ tube or J tube). See Gastroesophageal Reflux (general) and Feeding Tubes and Gastrostomies 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 might be all that is necessary, with additions of juices and fiber, but many children will need daily treatment with laxatives (PEG 3350, Miralax, Senokot, and Glycolax). Also, see Constipation Treatment (general), Fiber calculations(PDF Document 33 KB), Bowel Management Parent Information, and You Can Poop Too Program.

Tools that might be helpful include:

Subspecialist Collaborations & Other Resources

Pediatric Gastroenterology (see Services below for relevant providers)

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 Services below for relevant providers)

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 and 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 with 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 worrying constantly about the number of calories the child has received. In the child with GERD and limited capacity to protect his/her airway, treatment with a Nissen fundoplication may be important. Also, see Feeding Tubes and Gastrostomies 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 (general) 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.

Subspecialist Collaborations & Other Resources

Developmental Pediatrics (see Services below for relevant providers)

Coordinates evaluation and management of feeding concerns.

Pediatric Otolaryngology (see Services below for relevant providers)

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

Pediatric Gastroenterology (see Services below for relevant providers)

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

General Pediatric Surgery (see Services below for relevant providers)

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. 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. [Singhi: 2003] The Medical Home Portal's Seizures/Epilepsy module contains information regarding treatment.

Osteoporosis. Children with CP on seizure medication may be at particular risk of osteoporosis. Optimizing bone health is critical including insuring optimal vitamin D levels, adequate calcium intake, and if possible, a weight bearing program. Osteopenia Pathologic Fractures (general) and Osteoporosis and Antiepileptic Medications (general) 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. See Hydrocephalus and VP Shunts.

Subspecialist Collaborations & Other Resources

Pediatric Neurology (see Services below for relevant providers)

Confirms diagnosis of CP and manages seizures if present.

Pediatric Neurosurgery (see Services below for relevant providers)

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

Sleep

Many children with CP have difficulty sleeping, which impacts 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 management may be all that is necessary. Medications that might be helpful include diphenhydramine, chloral hydrate (successful only for short periods), melatonin, low dose trazodone, clonidine, gabapentin, and valium. For details of behavioral management, see Sleep Problems (general). In complicated scenarios, referral to a sleep center and possibly an overnight sleep study should be considered. Also, see Medications for Sleep (general).

Subspecialist Collaborations & Other Resources

Sleep Studies/Polysomnography (see Services below for relevant providers)

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

Pediatric Otolaryngology (see Services below for relevant providers)

Performs tonsillectomy and adenoidectomy to help alleviate obstructive sleep apnea issues.

Maturation/Sexual/Reproductive

Failure to achieve linear growth and delayed pubertal development with increased risk for osteoporosis is common in children with CP. 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 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 (e.g., the Mirena IUD). 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, see Sexuality and People with Disabilities(PDF Document 257 KB).

Subspecialist Collaborations & Other Resources

Gynecology (Ped/Adol, Special Needs) (see Services below for relevant providers)

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

Genito-Urinary

Approximately one quarter 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 (general) and Neurogenic Bladder (general) has more information about obtaining bladder continence.

Evaluation and Treatment/Management

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) Note: 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

Subspecialist Collaborations & Other Resources

Pediatric Urology (see Services below for relevant providers)

Evaluates and treats incontinence.

Developmental Pediatrics (see Services below for relevant providers)

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

Eyes/Vision

Since 40%-75% of children with CP have a visual problems, assessment of vision and interventions for visual impairment are an important component of care. [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), which is 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 one 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.

Subspecialist Collaborations & Other Resources

Pediatric Ophthalmology (see Services below for relevant providers)

Provides early intervention of potentially reversible vision problems.

Vision Services (see Services below for relevant providers)

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.

Schools for the Deaf & Blind (see Services below for relevant providers)

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. Children with auditory problems should be referred to hearing impaired specific early childhood programs if they are under three years of age, or served through their school district if they are school aged. Children with both vision and hearing impairments may be eligible for programs for children with dual sensory impairments. (Vision and hearing impairment information.) 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.

Subspecialist Collaborations & Other Resources

Pediatric Otolaryngology (see Services below for relevant providers)

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 Services below for relevant providers)

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.

Schools for the Deaf & Blind (see Services below for relevant providers)

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 a team, the 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 (general) and Inclusion Models (general).

Subspecialist Collaborations & Other Resources

Head Start/Early Head Start (see Services below for relevant providers)

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

Learning Evaluations (see Services below for relevant providers)

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. For the child with special needs, parents may need information on the characteristics of toys that would best match their child's abilities, interests, and learning needs as-well-as sources of adapted toys and instructions on how to adapt standard toys. The National Lekotek Center is a nonprofit organization dedicated to making play accessible for children with disabilities. Their website offers extensive information on choosing toys for children of all abilities, sources of adapted toys, and instructions for adapting/making toys. For the highly motivated professional or parent, training is offered on how to develop a toy lending library. Families also may call the National Lekotek Center for information at 1-800-366-PLAY.

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 the appropriate choice of activities, adapted equipment, adapted rules for the special needs child when appropriate, and support from peers, other parents, and coaches. Recreational Activities for CSHCN 2008(PDF Document 115 KB) provides further information.

Transitions

A transition refers to the process of moving from the pediatric health care and educational environment to the adult health care system and occupational environment. For some individuals this may also include a transition in living situation from the parent’s home to independent or supported living situations. Successful transition should be fostered for children of all abilities from the very beginning through activities, which give the message of expectation, responsibility, and value. Although those children with CP in special education will be served by the school system 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.).

If necessary, guardianship needs to be applied for. This can be a lengthy process including psychological and medical evaluations of the child and the 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 and may qualify for resources with the Division of Services for People with Disabilities (DSPD) they might have been ineligible for (based on family income) before their 18th birthday. Resources that provide helpful information and tools for planning transitions include: The Role of the Pediatrician in Transitioning Children and Adolescents With Developmental Disabilities and Chronic Illnesses From School to Work or College (AAP) has medical role recommendations to help promote continuity during periods of transition.

Complementary & Alternative Medicine

Many therapies are available that 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, is that a family have a frame work to use when considering each therapy (including traditional therapies) and collaborate with the child's medical home and or specialists to incorporate choice therapies into the child's overall treatment plan. See Alternative/Complementary Therapies (general info) and [Novak: 2013], which includes a chart of interventions (including CAM) and information on their effectiveness based on evidence levels.

Frequently Asked Questions

My child has a diagnosis of cerebral palsy, and his legs are continued to get stiffer despite braces. I thought that cerebral palsy wasn't progressive?

Although certain symptoms of cerebral palsy such as contractures and stiffness tend to worsen over time, the brain lesion responsible for these symptoms does not progress. Children with cerebral palsy are able to make developmental improvements over time, although in very involved children these improvements may be very slow. If you think that your child is regressing in his abilities, this is important information for your physician to know as it is possible that the diagnosis of cerebral palsy is not correct.

I have one child who was born with cerebral palsy and now I am thinking of getting pregnant again. What are the chances that my next child will have cerebral palsy?

The answer to this question is complicated and depends entirely on why your first child has cerebral palsy. Genetic conditions that may cause cerebral palsy may be inherited and lead to an increased risk for CP in subsequent children whereas environmental causes for CP are often very unlikely to happen again. Ask your provider who may refer you to a specialist such as a neurologist or geneticist for answers to this question. Also, it might be appropriate to consult with a perinatologist or high risk obstetrician prior to your next pregnancy.

Does my child with CP have a normal life expectancy?

The answer to this question depends on the type of cerebral palsy your child has and any related complications. Generally, children with more involved CP such as spastic quadriparesis may have shortened life expectancies, as children who are nonmobile and have difficulty eating by mouth by themselves are subject to illnesses such as pneumonia, although many live far into mid and late adulthood. Children with mild CP might be expected to have normal life spans. Because the answer to this question is specific to the child, ask your provider. There are many resources for parents of children with serious illness, for instance, see Partnership for Parents.

Will hyperbaric oxygen help my child with CP?

There are many alternative therapies without proven medical benefit by controlled scientific studies that are offered to families of children with disabilities. As these therapies are often quite expensive, families should research potential benefits and discuss these therapies with their medical home before embarking on any unproven and in some cases, potentially harmful, therapies. UCP Study on Hyperbaric Oxygen and US Dept Health & Human Services Report on Efficacy of Hyperbaric Oxygen Therapy contain conclusions for use of hyperbaric oxygen for children with CP.

Issues Related to Cerebral Palsy

Development (general)

Augmentative Communication

Eyes/Vision

Visual Impairment

Genito-Urinary

Neurogenic Bladder

Learning/Education/Schools

Inclusion Models

Mental Health/Behavior

Toilet Training

Nose/Throat/Mouth/Swallowing

Drooling

Pharmacy & Medications

Prescription Assistance Programs

Transitions

Guardianship

Resources

Information for Clinicians

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

Developmental Behavioral Pediatric Update Course (dbpeds.org)
Slides from lectures given at the DBPeds Prep Course, 2008, with various links, including genetic cases, learning disabilities, sleep disorders, and others.

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

Helpful Articles

PubMed Search on cerebral palsy: review articles for the last 2 years

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.

Medline Plus.
Cerebral palsy.
National Institutes of Health; (2014) http://medlineplus.nlm.nih.gov/medlineplus/cerebralpalsy.html. Accessed on June 2014.
Information regarding the care of a child with CP, including links to many other sources of information.

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
Describes systematically the best available intervention evidence for children with cerebral palsy.

Clinical Tools

Assessment Tools/Scales

Table of Gross Motor Milestones(PDF Document 29 KB)

Bowel Management Algorithm(PDF Document 47 KB)
Algorithm for management of chronic constipation developed in collaboration with pediatric gastroenterology.

Bowel Management (general)(PDF Document 74 KB)
General information on bowel function and management of constipation for families and providers.

Constipation Evaluation Tool(PDF Document 84 KB)
Provides a format for evaluation of chronic constipation in children.

Home Toileting Record(PDF Document 49 KB)
An easy-to-use form for keeping track of a child's toileting habits.

Developmental Screening Tools (dbpeds.org)
From Developmental Behavioral Pediatrics Online, this page provides brief descriptions of several commonly used developmental screening tools and includes source, scoring information, age range for use, time needed to complete, accuracy, cost, and links.

Musculoskeletal Exam for Common Orthopedic Complications of CP(PDF Document 81 KB)
A concise, easy to use tool to document the limitations of a child's musculoskeletal abilities and exam.

Other

Information about toys for children with CP is represented in the links below.

Ten Toy Tips(PDF Document 6 KB)
Questions to ask when choosing developmentally appropriate toys for differently-abled kids.

National Lekotek Center
An organization promoting play and toys for children with special healthcare needs.

Toys for Differently Abled Kids (Toys R Us)
A yearly catalog of toys for children with special needs sorted by type (gross motor, fine motor, communication, etc.).

Specialneedstoys.com
A great source for adapted toys, including specials on certain items.

Information & Support for Families

Family Diagnosis Page

Information on the Web

CP Information (MedlinePlus)
Basic information and links to many additional sources of reliable information; sponsored by the National Library of Medicine.

Resource list, Autism Council of Utah
A list of extensive local resources is available on this web site.

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

Support National & Local

Cerebral Palsy Support Groups (Children's Disability Information)
A list of support groups for different types of CP and other resources

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.

Services for Patients & Families

Audiology

See all Audiology services providers (64) in our database.

Bone Densitometry/DEXA

See all Bone Densitometry/DEXA services providers (3) in our database.

Developmental Pediatrics

See all Developmental Pediatrics services providers (5) in our database.

Early Intervention Programs

See all Early Intervention Programs services providers (52) in our database.

General Pediatric Surgery

See all General Pediatric Surgery services providers (2) in our database.

Gynecology (Ped/Adol, Special Needs)

See all Gynecology (Ped/Adol, Special Needs) services providers (22) in our database.

Head Start/Early Head Start

See all Head Start/Early Head Start services providers (56) in our database.

Learning Evaluations

See all Learning Evaluations services providers (10) in our database.

Neuropsychology

See all Neuropsychology services providers (10) in our database.

Nutrition/Dietary

See all Nutrition/Dietary services providers (56) in our database.

Pediatric Dentistry

See all Pediatric Dentistry services providers (46) in our database.

Pediatric Endocrinology

See all Pediatric Endocrinology services providers (5) in our database.

Pediatric Gastroenterology

See all Pediatric Gastroenterology services providers (2) in our database.

Pediatric Genetics

See all Pediatric Genetics services providers (3) in our database.

Pediatric Neurology

See all Pediatric Neurology services providers (4) in our database.

Pediatric Neurosurgery

See all Pediatric Neurosurgery services providers (1) in our database.

Pediatric Ophthalmology

See all Pediatric Ophthalmology services providers (5) in our database.

Pediatric Orthopedics

See all Pediatric Orthopedics services providers (3) in our database.

Pediatric Otolaryngology

See all Pediatric Otolaryngology services providers (9) in our database.

Pediatric Physical Medicine & Rehab

See all Pediatric Physical Medicine & Rehab services providers (6) in our database.

Pediatric Pulmonology

See all Pediatric Pulmonology services providers (5) in our database.

Pediatric Urology

See all Pediatric Urology services providers (2) in our database.

Schools for the Deaf & Blind

See all Schools for the Deaf & Blind services providers (11) in our database.

Sleep Studies/Polysomnography

See all Sleep Studies/Polysomnography services providers (10) in our database.

Vision Services

See all Vision Services services providers (25) in our database.

For other services related to this condition, browse our Services categories or search our database.

Authors

Authors: Lynne M Kerr, MD, PhD - 6/2014
Lisa Samson-Fang, MD - 6/2014
Content Last Updated: 7/2014

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Assessment and treatment of movement disorders in children with cerebral palsy.
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Information regarding the care of a child with CP, including links to many other sources of information.

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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.

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