Overview

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).)

Practice Guidelines

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 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:

• Tracking Form for Children With Cerebral Palsy (AAP) may be helpful with care coordination.
• Recommended Components of Medical Homes for Children With Cerebral Palsy (AAP) lists applications of the medical home model as related to caring for children with CP.

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 ( 103 KB).

Pearls & Alerts for Assessment

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 (AAP).

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 & Secondary Conditions

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

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 discusses constipation management, clean out procedures, and maintenance medications. Toilet Training 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 and SCI (MHP) ( 239 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)?

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/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.

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

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 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.

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 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

Clinical Assessment

Slowly Progressive Disorders Sometimes Misdiagnosed as CP

Complementary & Alternative Medicine

Alternative/Complementary Therapies (general information)

Development (general)

Augmentative Communication

Eyes/Vision

Visual Impairment

Funding & Access to Care

Appealing Funding Denials

Genito-Urinary

Neurogenic Bladder

Learning/Education/Schools

Inclusion Models

Maturation/Sexual/Reproductive

Puberty in Children with CP and other Chronic Conditions

Mobility/Function/ADLs/Adaptive

Adaptive Seating
Basic Augmentative and Alternative Communication (AAC) Device Characteristics

Neurology

Hydrocephalus and VP Shunts

Nutrition/Growth/Bone

Feeding Tube Issues
Nutrition and Growth in Children with CP
Osteoporosis and Antiepileptic Medications
Power Packing
Thickening Liquids & Pureeing Foods

Recreation & Leisure

Adapted Athletic Programs

Respiratory

Aspiration/Chronic Lung Disease

Sleep

Medications for Sleep

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

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.

Assessment Tools/Scales

Musculoskeletal Exam for Common Orthopedic Complications of CP and SCI (MHP) ( 239 KB)
A concise, easy-to-use tool to document the limitations of a child's musculoskeletal abilities and exam; Medical Home Portal.

Other

Ten Toy Tips ( 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. These centers offer a toy lending library, computer play, family play, and other programs.

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 sensory toys for every occasion, and specials on certain items.

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.

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

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.

Studies/Registries

CP Clinical Trials (ClinicalTrials.gov)

CP Research Trials (Centerwatch.com)

CP Registry

Services for Patients & Families in Idaho (ID)

Service Categories	# of providers* in:	ID	NW	Other states (5)  (show)		MT	NM	NV	RI	UT
Audiology		31	1		48	300	5	20	52
Bone Densitometry/DEXA						4
Developmental - Behavioral Pediatrics		2	1		6	4	3	12	8
Early Intervention for Children with Disabilities/Delays		150	2		22	216	26	12	49
General Pediatric Surgery		1			2	12	5	4	2
Gynecology (Ped/Adol, Special Needs)		2							21
Head Start/Early Head Start		69	1		94	130	55	6	63
Learning Evaluations, Counseling		114				282	9		10
Neuropsychiatry/Neuropsychology		3			3		8	6	18
Nutrition Assessment Services		103			2	171	11	3	16
Pediatric Dentistry		60			47	77	26	21	61
Pediatric Endocrinology		1	1		13	27	4	13	5
Pediatric Gastroenterology		2	1		20	5	5	18	3
Pediatric Genetics		3	1		6	2	2	4	5
Pediatric Neurology		3			14	33	7	11	5
Pediatric Neurosurgery		1	1		1		4	1	2
Pediatric Ophthalmology		8	1		14	8	5	7	6
Pediatric Orthopedics		2	2		11	10	4	10	17
Pediatric Otolaryngology		3	1		4		4	5	9
Pediatric Physical Medicine & Rehabilitation			1		5	2		2	7
Pediatric Pulmonology		1			6	5	5	10	4
Pediatric Urology		1			5	4	13	1	2
Public Special Schools					1	15	2	2	20
Sleep Studies/Polysomnography		8			3	22			5
Vision Screening		166	3		7	210	11	3	19

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.

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
Evidence-based summary of indicated diagnostic evaluation for children with cerebral palsy.

Ball, William S., Jr.
Pediatric Neuroradiology.
Philadelphia: Lippincott-Raven; 1997.

Barkovich, A. James.
Pediatric Neuroimaging.
Fourth Edition ed. Lippincott Williams and Wilkins; 2005.

Bax M, Tydeman C, Flodmark O.
Clinical and MRI correlates of cerebral palsy: the European Cerebral Palsy Study.
JAMA. 2006;296(13):1602-8. PubMed abstract

Black PD.
Ocular defects in children with cerebral palsy.
Br Med J. 1980;281(6238):487-8. PubMed abstract / Full Text

Cheyette BN, Cheyette SN, Cusmano-Ozog K, Enns GM.
Dopa-responsive dystonia presenting as delayed and awkward gait.
Pediatr Neurol. 2008;38(4):273-5. PubMed abstract

Christensen D, Van Naarden Braun K, Doernberg NS, Maenner MJ, Arneson CL, Durkin MS, Benedict RE, Kirby RS, Wingate MS, Fitzgerald R, Yeargin-Allsopp M.
Prevalence of cerebral palsy, co-occurring autism spectrum disorders, and motor functioning - Autism and Developmental Disabilities Monitoring Network, USA, 2008.
Dev Med Child Neurol. 2014;56(1):59-65. PubMed abstract

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.
Orthop Clin North Am. 2010;41(4):507-17. PubMed abstract
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.
J Child Neurol. 2007;22(6):756-60. PubMed abstract

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

Fenichel, GM.
Clinical Pediatric Neurology: A Signs and Symptoms Approach.
5th Edition ed. Philadelphia: Elsevier Saunders; 2005.

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

Gibson CS, Maclennan AH, Dekker GA, Goldwater PN, Sullivan TR, Munroe DJ, Tsang S, Stewart C, Nelson KB.
Candidate genes and cerebral palsy: a population-based study.
Pediatrics. 2008;122(5):1079-85. PubMed abstract

Hagberg B, Hagberg G, Olow I, von Wendt L.
The changing panorama of cerebral palsy in Sweden. V. The birth year period 1979-82.
Acta Paediatr Scand. 1989;78(2):283-90. 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

Kato M, Dobyns WB.
Lissencephaly and the molecular basis of neuronal migration.
Hum Mol Genet. 2003;12 Spec No 1:R89-96. 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

Lequin MH, Barkovich AJ.
Current concepts of cerebral malformation syndromes.
Curr Opin Pediatr. 1999;11(6):492-6. PubMed abstract
Summarizes current knowledge of the genetics of brain malformations.

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

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.

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.
Dev Med Child Neurol. 2008;50(7):510-4. PubMed abstract

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.

Odding, E, Roebroeck, ME, and Stam, HJ.
The Epidemiology of cerebral palsy: incidence, impairments, and risk factors.
UCP Research and Education Foundation Fact Sheet; (2006) http://www.ucpresearch.org/fact-sheets/epidemiology-cerebral-palsy.php. Accessed on August 2008.

Osborn, Anne G.
Diagnostic Neuroradiology A Text/Atlas.
Mosby; 1994.

Oskoui M, Coutinho F, Dykeman J, Jetté N, Pringsheim T.
An update on the prevalence of cerebral palsy: a systematic review and meta-analysis.
Dev Med Child Neurol. 2013;55(6):509-19. PubMed abstract

Potulska A, Friedman A.
Controlling sialorrhoea: a review of available treatment options.
Expert Opin Pharmacother. 2005;6(9):1551-4. PubMed abstract

Rouse DJ, Hirtz DG, Thom E, Varner MW, Spong CY, Mercer BM, Iams JD, Wapner RJ, Sorokin Y, Alexander JM, Harper M, Thorp JM Jr, Ramin SM, Malone FD, Carpenter M, Miodovnik M, Moawad A, O'Sullivan MJ, Peaceman AM, Hankins GD, Langer O, Caritis SN, Roberts JM.
A randomized, controlled trial of magnesium sulfate for the prevention of cerebral palsy.
N Engl J Med. 2008;359(9):895-905. PubMed abstract

Ryll U, Bastiaenen C, De Bie R, Staal B.
Effects of leg muscle botulinum toxin A injections on walking in children with spasticity-related cerebral palsy: a systematic review.
Dev Med Child Neurol. 2011;53(3):210-6. PubMed abstract

Samdup DZ, Smith RG, Il Song S.
The use of complementary and alternative medicine in children with chronic medical conditions.
Am J Phys Med Rehabil. 2006;85(10):842-6. PubMed abstract

Schoendorfer N, Boyd R, Davies PS.
Micronutrient adequacy and morbidity: paucity of information in children with cerebral palsy.
Nutr Rev. 2010;68(12):739-48. PubMed abstract

Singhi P, Jagirdar S, Khandelwal N, Malhi P.
Epilepsy in children with cerebral palsy.
J Child Neurol. 2003;18(3):174-9. PubMed abstract

Tolaymat LL, Kaunitz AM.
Long-acting contraceptives in adolescents.
Curr Opin Obstet Gynecol. 2007;19(5):453-60. PubMed abstract

Walsh JS, Eastell R, Peel NF.
Effects of Depot medroxyprogesterone acetate on bone density and bone metabolism before and after peak bone mass: a case-control study.
J Clin Endocrinol Metab. 2008;93(4):1317-23. PubMed abstract

van Toorn, R, Laughton, B, van Zyl, N, Doets, L, and Elsinger, F.
Aetiology of cerebral palsy in children presenting at Tygerberg Hospital.
South Africa Journal of Child Health. 2007;1(2):74-78. / Full Text