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CEREBRAL REFERS TO THE ;

PALSY REFERS TO THE LOSS OR IMPAIRMENT OF MOTOR FUNCTION

FIGURE 1 WHAT IS CP

Cerebral palsy (CP) describes a group of permanent disorders of the development of movement and posture, causing activity limitations, attributed to non progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of are often accompanied by disturbances of sensation, perception, , communication and behavior, , Dyskenetic and by secondary musculoskeletal problems.

MOTOR TYPES FIGURE 2

The specific motor types present in CP are DYSKINETIC CEREBRAL PALSY determined by the extent, type, and location Dyskinetic motor patterns (also includes athetoid, of a child’s abnormalities. (Fig. 1) choreoathetoid, and ) are characterized by slow and uncontrollable writhing or jerky CEREBRAL PALSY movements of the hands, feet, arms, or legs. / Spastic CP is the most common type. People /unilateral will experience increased and their movements may appear stiff or awkward. Differ- Ataxia affects balance and depth perception. ent parts of the body can be affected: Children with ataxia will often have poor coordination and walk unsteadily with a wide- Spastic hemiplegia/hemiparesis (Fig. 2) based . typically affects the arm, hand, and leg on one side of the body. MIXED TYPES Mixed types of CP refer to symptoms that don’t Spastic / /diparesis (Fig. 2) correspond to any single type of CP but are a diparesis/bilateral involves muscle stiffness that is predominantly mix of types. For example, a child with mixed in the legs. The arms may be affected to a CP may have some muscles that are too tight lesser extent and others that are too relaxed.

Spastic quadriplegia/quadriparesis (Fig. 2) is the most severe form of CP. It is caused by CEREBRAL PALSY CAN BE DESCRIBED widespread damage to the brain or significant BY THE WAY IT AFFECTS PEOPLE’S MOVE- brain malformations. MENT, THE PART OF THE BODY AFFECTED /

AND BY HOW SEVERE THE AFFECTS ARE quadriparesis/bilateral

3 COLUMBUS CIRCLE | 15TH FLOOR | NEW YORK, NY 10019 | PHONE 212 520 1686 | FAX 917 599 0431 VISIT CEREBRALPALSYFOUNDATION.ORG FOR MORE INFORMATION SEVERITY CLASSIFICATION GMFCS E & R DESCRIPTORS AND ILLUSTRATIONS FOR CHILDREN AGES 6 – 12 YEARS Cerebral palsy varies in severity and can be classified by gross motor function, manual ability and communication. LEVEL 1 Children walk at home, school, outdoors, and in the community. They can climb stairs without the use of railing. Children perform gross motor skills such as running and GROSS MOTOR FUNCTION jumping, but speed, balance and coordination are limited. The gross motor skills (e.g. sitting and ) of children and young people with cerebral palsy can be categorized into 5 different levels using a tool called the Gross Motor Function Classification System (GMFCS). GMFCS looks LEVEL 2 Children walk in most settings and climb stairs holding at movements such as sitting and walking. onto railing. They may experience difficulty walking long dis- tances and balancing on uneven terrain, inclines, in crowded areas or confined spaces. Children may walk with physical assistance, a hand-held mobility device or use wheeled mo- bility over long distances. Children have only minimal ability MOST to perform gross motor skills such as running and jumping. LEVEL 3 Children walk using a hand-held mobility device in most indoor settings. They may climb stairs holding onto a railing CHILDREN with supervision or assistance. Children use wheeled mobil- ity when traveling long distances and may self-propel for WITH CP shorter distances. WILL WALK LEVEL 4 Children use methods of mobility that require physical assis- tance or powered mobility in most settings. They may walk 60% for short distances at home with physical assistance or use powered mobility or a body support when positioned. WILL WALK WITHOUT At school, outdoors and in the community children are THE USE OF AN AID transported in a manual or use powered mobility.

10% LEVEL 5 Children are transported in a manual wheelchair in all settings. Children are limited in their ability to maintain WILL WALK WITH AN AID antigravity head and trunk postures and control leg and arm movement. 30% WILL USE A WHEELCHAIR

GMFCS Descriptors: Palisano et al (1997) Developmental and Child 39:214–23

3 COLUMBUS CIRCLE | 15TH FLOOR | NEW YORK, NY 10019 | PHONE 212 520 1686 | FAX 917 599 0431 VISIT CEREBRALPALSYFOUNDATION.ORG FOR MORE INFORMATION MANUAL ABILITY CLASSIFICATION SYSTEM (MACS) The ability of children from 4 – 18 years old with MACS LEVELS cerebral palsy to handle objects in everyday ac- tivities can be categorized into 5 levels using the Manual Ability Classification System (MACS). Handles objects easily and successfully. At most, limitations in the ease of performing manual tasks requiring speed and accuracy. MACS level is determined based on knowledge LEVEL 1 However, any limitations in manual abilities do not restrict about the child’s actual performance in daily life. independence in daily activities. It is not done by conducting a specific assess- ment, but by asking someone who knows the child and how that child performs typically. MACS is based on the use of both hands in activities, not an assessment of each hand separately. Handles most objects but with somewhat reduced quality and/or LEVEL 2 speed of achievement. Certain activities may be avoided or be achieved with some difficulty; alternative ways of performance might be used but manual abilities do not usually restrict independence MACS IS BASED in daily activities. ON THE USE OF BOTH HANDS Handles objects with difficulty; needs help to prepare and/or modify LEVEL 3 activities. The performance is slow and achieved with limited success DURING regarding quality and quantity. Activities are performed independently FUNCTIONAL if they have been set up or adapted. ACTIVITIES Handles a limited selection of easily managed objects in adapted LEVEL 4 situations. Performs parts of activities with effort and with limited suc- cess. Requires continuous support and assistance and/or adapted equipment, for even partial achievement of the activity.

Does not handle objects and has severely limited ability LEVEL 5 to perform even simple actions. Requires total assistance.

MACS Descriptors: www.macs.nu

3 COLUMBUS CIRCLE | 15TH FLOOR | NEW YORK, NY 10019 | PHONE 212 520 1686 | FAX 917 599 0431 VISIT CEREBRALPALSYFOUNDATION.ORG FOR MORE INFORMATION COMMUNICATION FUNCTION CLASSIFICATION SYSTEM (CFCS) CFCS LEVELS

The CFCS is a tool used to classify the everyday Effective Sender and Receiver with unfamiliar and familiar partners. communication of an individual with cerebral LEVEL 1 The person independently alternates between sender and receiver roles palsy. The CFCS consists of 5 descriptive levels with most people in most environments. The communication occurs easily and at a comfortable pace with both unfamiliar and familiar for everyday communication performance. conversational partners. Communication misunderstandings are quickly repaired and do not interfere with the overall effectiveness of the person’s communication.

Effective but slower paced Sender and/or Receiver with unfamiliar LEVEL 2 and/or familiar partners. The person independently alternates between sender and receiver roles with most people in most environments, but the conversational pace is slow and may make the communication interaction more difficult. The person may need extra time to under- stand messages, compose messages, and/or repair misunderstandings. Communication misunderstanding are often repaired and do not interfere with the eventual effectiveness of the person’s communication 1 IN 5 with both unfamiliar and familiar partners. PEOPLE WITH CEREBRAL PALSY Effective Sender and Receiver with familiar partners. The person LEVEL 3 alternates between sender and receiver roles with familiar (but not unfamiliar) conversational partners in most environments. WILL HAVE Communication is not consistently effective with most unfamiliar COMMUNICATION partners, but is usually effective with familiar partners. DIFFICULTIES Inconsistent Sender and/or Receiver with familiar partners. LEVEL 4 The person does not consistently alternate sender and receiver roles. This type of inconsistency might be seen in different types of communicators including: a) an occasionally effective sender and receiver; b) an effective sender but limited receiver; c) a limited sender but effective receiver. Communication is sometimes effective with familiar partners.

Seldom Effective Sender and Receiver even with familiar partners. LEVEL 5 The person is limited as both a sender and a receiver. The person’s communication is difficult for most people to understand. The person appears to have limited understanding of messages from most people. Communication is seldom effective even with familiar partners.

CFCS Descriptors: Hidecker et al (2001) Developmental Medicine and Child Neurology, 53(8):704-10.

3 COLUMBUS CIRCLE | 15TH FLOOR | NEW YORK, NY 10019 | PHONE 212 520 1686 | FAX 917 599 0431 VISIT CEREBRALPALSYFOUNDATION.ORG FOR MORE INFORMATION OF ALL CHILDREN CAUSE AND TIMING WITH CEREBRAL PALSY,

Cerebral palsy is caused by abnormal development or damage to the motor area of the brain’s outer layer (called the ), the 60% part of the brain that directs muscle movement. This damage can occur before, during, or shortly after birth. ARE BORN

EXAMPLES OF SEEN IN CP AT TERM

CONGENITAL CP ABNORMAL DEVELOPMENT OF THE BRAIN The majority of children have Congenital cerebral (cerebral dysgenesis) palsy (that is, they were born with it), although it Mutations in genes, , fevers, trauma, may not be detected until months or years later. and other conditions can interrupt the normal Possible causes may include genetic abnormali- process of brain growth. This can cause brain ties, congenital brain malformations, maternal malformations that interfere with the transmis- infections/fevers, or fetal . sion of brain signals during fetal development.

ACQUIRED CP BLEEDING IN THE BRAIN A small number of children have Acquired (intracranial hemorrhage) cerebral palsy, which means it begins after birth. Bleeding inside the brain from blocked or bro- Some causes of Acquired cerebral palsy include ken blood vessels is commonly caused by fetal brain damage in the first few months or years of . Some babies suffer a stroke while still in life, brain infections such as bacterial the womb because of blood clots in the or viral , problems with blood flow that block blood flow in the brain. Other types to the brain, or head injury from a motor vehicle of fetal stroke are caused by malformed or weak accident, a fall, or child abuse. blood vessels in the brain or by blood-clotting abnormalities. DAMAGE TO OF THE BRAIN (periventricular leukomalacia, or PVL) SEVERE LACK OF OXYGEN IN THE BRAIN IT IS THE The white matter of the brain is responsible for Asphyxia, a lack of oxygen in the brain caused by transmitting signals inside the brain and to the an interruption in breathing or poor oxygen sup- rest of the body. Damage from PVL looks like tiny ply, is common for a brief period of time in ba- MOST COMMON holes in the white matter of an infant’s brain. bies due to the stress of labor and delivery. If the PHYSICAL IN These gaps in brain tissue interfere with the supply of oxygen is cut off or reduced for lengthy normal transmission of signals. Researchers have periods, an infant can develop a type of brain CHILDHOOD identified a period of time between 26 and 34 damage called hypoxicischemic , weeks of gestation, in which periventricular white which destroys tissue in the cerebral motor cor- matter is particularly sensitive to injury. tex and other areas of the brain.

3 COLUMBUS CIRCLE | 15TH FLOOR | NEW YORK, NY 10019 | PHONE 212 520 1686 | FAX 917 599 0431 VISIT CEREBRALPALSYFOUNDATION.ORG FOR MORE INFORMATION IN MOST CASES, RISK FACTORS BRAIN INJURY LEADING TO CEREBRAL PALSY There are some medical conditions or events that can happen during and delivery that may increase a baby’s risk of being born OCCURS with cerebral palsy. DURING RISKS DURING WARNING SIGNS PREGNANCY DURING CHILDBIRTH PREGNANCY

MULTIPLE BIRTHS There are also medical conditions during labor , triplets, and other multiple births are and delivery, and immediately after delivery linked to an increased risk of cerebral palsy. that act as warning signs for an increased risk of CP. However, most of these children will not INFECTIONS DURING PREGNANCY develop CP. Warning signs include: Infections such as , rubella (Ger- man measles), cytomegalovirus, and herpes, can LOW BIRTHWEIGHT AND PREMATURE BIRTH infect the womb and placenta. Inflammation trig- Premature babies (born less than 37 weeks) and gered by may then go on to damage babies weighing less than 5 ½ pounds at birth the developing nervous system in an unborn baby. are at increased risk.

BLOOD TYPE INCOMPATIBILITY BETWEEN BREECH PRESENTATION MOTHER AND CHILD Babies with cerebral palsy are more likely to be in a breech position (feet first) instead of head EXPOSURE TO TOXIC SUBSTANCES first at the beginning of labor. Babies who are Mothers who have been exposed to substances unusually floppy are more likely to be born in the during pregnancy, such as methyl mercury, are breech position. at risk of having a baby with cerebral palsy. More than 50 percent of newborns develop COMPLICATED LABOR AND DELIVERY jaundice (a yellowing of the skin or whites of MOTHERS WITH THYROID ABNORMALITIES, A baby who has vascular or respiratory problems the eyes) after birth when , a substance , EXCESS during labor and delivery may already normally found in bile, builds up faster than PROTEIN IN THE URINE, OR have suffered brain damage or abnormalities. their livers can break it down. Severe, untreated Mothers with any of these conditions are slightly jaundice can damage brain cells and can cause more likely to have a child with CP. LOW APGAR SCORE deafness and CP. The Apgar score is a numbered rating that reflects a newborn’s physical health. Doctors SEIZURES periodically score a baby’s heart rate, breathing, An infant who has seizures faces a higher risk of muscle tone, reflexes, and skin color during being diagnosed later in childhood with CP. the first minutes after birth.

3 COLUMBUS CIRCLE | 15TH FLOOR | NEW YORK, NY 10019 | PHONE 212 520 1686 | FAX 917 599 0431 VISIT CEREBRALPALSYFOUNDATION.ORG FOR MORE INFORMATION CEREBRAL PALSY, EXCEPT IN ITS MILDEST FORMS, CAN BE EVIDENT IN THE FIRST 12–18 MONTHS

EVIDENCE IN DELAYED MOTOR SKILLS IN THE FIRST 12-18 MONTHS

The signs of cerebral palsy usually appear in the early months IN A BABY YOUNGER THAN of life, although specific diagnosis may be delayed until age two 6 MONTHS OF AGE or later. Infants with CP frequently have developmental delays, THE HEAD DROOPS WHEN YOU PICK in which they are slow to reach developmental milestones such THEM UP WHILE THEY’RE LYING ON THEIR BACK as learning to roll over, sit, crawl, or walk. THEY FEEL STIFF Some infants with CP have abnormal muscle CHILDREN WITH CP EXHIBIT A WIDE tone. Decreased muscle tone () can VARIETY OF SYMPTOMS,* INCLUDING: THEY FEEL FLOPPY make them appear relaxed, or even floppy. Increased muscle tone () can make lack of muscle coordination when WHEN YOU PICK THEM UP, THEIR LEGS them seem stiff or rigid. The symptoms of CP performing voluntary movements (ataxia); GET STIFF AND CAN CROSS OR SCISSOR differ in type and severity from one person to stiff or tight muscles and exaggerated the next, and may even change in an individual reflexes spasticity( ); IN A BABY OLDER THAN over time. All people with CP have problems with weakness in one or more arm or leg; 6 MONTHS OF AGE movement and posture, and some also have a walking on the toes, a crouched gait, THEY DON’T ROLL OVER certain level of intellectual disability. Seizures, or a “scissored” gait; IN EITHER DIRECTION abnormal physical sensations or perceptions, variations in muscle tone, either too stiff and other medical disorders are common in or too floppy; THEY CAN’T BRING THEIR individuals with CP. People with CP may also excessive or difficulties HANDS TOGETHER have impaired vision or , and communi- or speaking; cation issues. shaking () or random THEY HAVE DIFFICULTY BRINGING involuntary movements; THEIR HANDS TO THEIR MOUTH delays in reaching milestones; difficulty with precise movements such as THEY REACH OUT WITH ONLY writing or buttoning a shirt. ONE HAND WHILE KEEPING THE OTHER FISTED *It is important to note that some children IN A BABY OLDER THAN without CP also may show some of these signs. 10 MONTHS OF AGE

THEY CRAWL IN A LOPSIDED MANNER, PUSHING OFF WITH ONE HAND AND CHILDREN WITH CP ARE LEG WHILE DRAGGING THE OPPOSITE LIKELY TO ALSO HAVE OTHER HAND AND LEG IMPAIRMENTS IN ADDITION THEY CANNOT STAND WITHOUT TO THEIR MOTOR DISABILITY HOLDING ONTO SUPPORT

3 COLUMBUS CIRCLE | 15TH FLOOR | NEW YORK, NY 10019 | PHONE 212 520 1686 | FAX 917 599 0431 VISIT CEREBRALPALSYFOUNDATION.ORG FOR MORE INFORMATION CEREBRAL PALSY IS A LIFE-LONG PHYSICAL DISABILITY CAUSED BY DAMAGE OF THE DEVELOPING BRAIN

DIAGNOSIS

Most children with cerebral palsy are diagnosed during the first 2 years of life. But if a child’s symptoms are mild, it can be difficult for a doctor to make a reliable diagnosis before the age of 4 or 5.

NEUROIMAGING TECHNIQUES

Neuroimaging techniques that allow doctors to Computed tomography (CT) uses x-rays to look into the brain (such as an MRI scan) can create images that show the structure of the detect abnormalities that indicate a potentially brain and the areas of damage. treatable . Neuroimaging EVALUATION methods include: An electroencephalogram is another test that uses a series of electrodes that are either Doctors will order a series of tests to evaluate Magnetic resonance imaging (MRI) uses a taped or temporarily pasted to the scalp to the child’s motor skills. During regular visits, computer, a magnetic field, and radio waves detect electrical activity in the brain. the doctor will monitor the child’s develop- to create an anatomical picture of the Changes in the normal electrical pattern ment, growth, muscle tone, age-appropriate brain’s tissues and structures. An MRI can may help to identify epilepsy. motor control, hearing and vision, posture, and show the location and type of damage and coordination, in order to rule out other disorders offers finer levels of details than CT. Some that could cause similar symptoms. Although metabolic disorders can masquerade as CP. symptoms may change over time, CP is not pro- Most of the childhood metabolic disorders gressive. If a child is continuously losing motor have characteristic brain abnormalities or MOST skills, the problem more likely is a condition malformations that will show up on an MRI. other than CP—such as a genetic or muscle CHILDREN ARE disease, metabolism disorder, or tumors in the Cranial ultrasound uses high-frequency nervous system. sound waves to produce pictures of the of young babies. It is used for high- DIAGNOSED Lab tests can identify other conditions that risk premature infants because it is the least may cause symptoms similar to those associated intrusive of the imaging techniques, DURING THE with CP. although it is not as successful as computed tomography or magnetic resonance imaging FIRST 2 YEARS Referrals to specialists such as a child neurolo- at capturing subtle changes in white gist, developmental pediatrician, ophthalmologist, matter—the type of brain tissue that is or otologist aid in a more accurate diagnosis and damaged in CP. OF LIFE help doctors develop a specific treatment plan.

3 COLUMBUS CIRCLE | 15TH FLOOR | NEW YORK, NY 10019 | PHONE 212 520 1686 | FAX 917 599 0431 VISIT CEREBRALPALSYFOUNDATION.ORG FOR MORE INFORMATION ACCOMPANYING IMPAIRMENTS 1 IN 2 PEOPLE DELAYED GROWTH AND DEVELOPMENT children with CP have difficulty understanding WITH CEREBRAL PALSY Children with moderate to severe CP, often lag and organizing visual information. LIVE IN behind in growth and development. The muscles and limbs affected by CP tend to be smaller than normal, especially in children with spastic Impaired hearing is also more frequent among CHRONIC hemiplegia, whose limbs on the affected side of those with CP than in the general population. the body may not grow as quickly or as long as Some children have partial or complete hearing DAILY PAIN those on the normal side. loss, particularly as the result of jaundice or lack of oxygen to the developing brain. DISORDER As many as half of all children with CP have SPEECH AND LANGUAGE DISORDERS one or more seizures. Children with both cerebral Speech and language disorders, such as dif- palsy and epilepsy are more likely to have an ficulty forming words and speaking clearly, are intellectual disability. present in more than a third of those with CP. Poor speech impairs communication and is often interpreted as a sign of cognitive impairment, Approximately 30 – 50 percent of individuals which can be very frustrating to children with with CP will be intellectually impaired. Mental CP, especially the majority who have average to impairment is more common among those with above average intelligence. spastic quadriplegia than in those with other types of cerebral palsy. DROOLING Some individuals with CP drool because they SPINAL DEFORMITIES AND OSTEOARTHRITIS have poor control of the muscles of the throat, Deformities of the spine – curvature (), mouth, and tongue. humpback (kyphosis), and saddle back (lordosis) – are associated with CP. Spinal deformities can INCONTINENCE make sitting, standing, and walking difficult and A possible of CP is incontinence cause chronic back pain. Pressure on and mis- (loss of bladder control), caused by poor control alignment of the joints may result in of the muscles that keep the bladder closed. GLOBALLY, (a breakdown of cartilage in the joints and bone Medical treatments for incontinence include enlargement). special exercises, , prescription OVER drugs, , or surgically implanted devices IMPAIRED VISION to replace or aid muscles. 17 MILLION Many children with CP have , com- monly called “cross eyes,” which left untreated ABNORMAL SENSATIONS AND PERCEPTIONS can lead to poor vision in one eye and can inter- Some individuals with CP experience pain PEOPLE fere with the ability to judge distance. Some or have difficulty feeling simple sensations, HAVE CEREBRAL PALSY such as touch.

3 COLUMBUS CIRCLE | 15TH FLOOR | NEW YORK, NY 10019 | PHONE 212 520 1686 | FAX 917 599 0431 VISIT CEREBRALPALSYFOUNDATION.ORG FOR MORE INFORMATION INFECTIONS AND LONG-TERM ILLNESSES OSTEOPENIA Many adults with CP have a higher risk of heart Children with CP who are unable to walk risk and lung disease, and (often from developing poor bone density (osteopenia), a CHILDREN inhaling bits of food into the lungs), than those family of drugs called , which without the disorder. has been approved by the FDA to treat mineral WITH CP loss in elderly patients, also appeared to increase bone mineral density. Doctors may choose to se- ARE MORE Muscles can become painfully fixed into abnor- lectively prescribe the drug off-label to children SUSCEPTIBLE TO mal positions, called contractures, which can to prevent osteopenia. increase muscle spasticity and joint deformities ORAL HEALTH in people with CP. PAIN Pain can be a problem for people with CP due to spastic muscles and the stress/strain on parts of CONDITIONS Swallowing, sucking, or feeding difficulties can the body that are compensating for muscle ab- make it difficult for many individuals with CP, normalities. Some individuals may also have fre- particularly infants, to get proper nutrition and quent and irregular muscle that can’t be gain or maintain weight. predicted or medicated in advance. such as can reduce the pain associat- DENTAL PROBLEMS ed with muscle spasms and has been Many children with CP are at risk of developing used successfully to decrease the severity and gum disease and cavities because of poor dental frequency of painful spasms. in- hygiene. Certain medications, such as seizure jections have also been shown to decrease spas- drugs, can exacerbate these problems. ticity and pain. Intrathecal has shown good results in reducing pain. Some children and INACTIVITY adults have been able to decrease pain by using Childhood inactivity is magnified due to impair- noninvasive and drug-free interventions such as ment and control voluntary movement. While distraction, relaxation training, biofeedback, and children with CP may exhibit increased energy therapeutic massage. expenditure during activities of daily living, move- ment impairments make it difficult for them to participate in and activities to develop and PAIN CAN BE A PROBLEM FOR maintain strength and fitness. Inactive adults with exhibit increased severity of dis- PEOPLE WITH CP DUE TO SPASTIC MUSCLES AND THE STRESS/ 1 IN 4 CHILDREN WITH ease and reduced overall health and well-being. STRAIN ON PARTS OF THE BODY CEREBRAL PALSY HAVE EPILEPSY EPILEPSY THAT ARE COMPENSATING Many children with intellectual disability and FOR MUSCLE ABNORMALITIES CP also have epilepsy. In general, drugs are prescribed based on the type of seizures an individual experiences, since no one drug controls all types. Some individuals may need a combination of two or more drugs to achieve good seizure control.

3 COLUMBUS CIRCLE | 15TH FLOOR | NEW YORK, NY 10019 | PHONE 212 520 1686 | FAX 917 599 0431 VISIT CEREBRALPALSYFOUNDATION.ORG FOR MORE INFORMATION TREATMENTS CEREBRAL PALSY Cerebral palsy can’t be cured, but treatment will often improve or sustain a child’s capabilities. There is no standard that IS A CONDITION works for every individual with CP. Once the diagnosis is made, and the type of CP is determined, a team of health care profession- THAT IS als will work with a child and his or her parents to identify specific impairments and needs, and then develop an appropriate plan PERMANENT to tackle the core disabilities that affect the child’s quality of life.

SPEECH AND LANGUAGE THERAPY Botulinum toxin (Botox), injected locally, THERAPEUTIC OPTIONS Speech and language therapy can improve a has become a standard treatment for child’s ability to speak more clearly, help with overactive muscles in children with spastic swallowing disorders, and learn new ways to com- movement disorders such as CP. Botox municate. Examples include sign language and/ relaxes contracted muscles by keeping Physical therapy, usually begins in the first few or special communication devices such as a com- cells from over-activating. The relaxing years of life or soon after the diagnosis is made. puter with a voice synthesizer, or a special board effect of a Botox injection lasts approximately Specific sets of exercises (such as resistive, or covered with symbols of everyday objects and 3 months. Undesirable side effects are mild programs) and activities can activities to which a child can point to indicate and short-lived, consisting of pain upon maintain or improve muscle strength, balance, his or her wishes. Treatments for problems with injection and occasionally mild flu-like motor skills, and prevent contractures. eating and drooling are sometimes necessary if symptoms. Botox injections are most a child has problems controlling the muscles of effective when followed by physical therapy their mouth, jaw or tongue. program and splinting. Such injections work Occupational therapy focuses on optimizing best for children who have some control upper body function, improving posture, and over their motor movements and have a making the most of a child’s mobility. Occupa- DRUG TREATMENTS limited number of muscles to treat, none of tional therapists help individuals address new which are fixed or rigid. ways to meet everyday activities such as ORAL MEDICATIONS dressing, going to school, and participating in Medications such as diazepam, baclofen, dan- Intrathecal baclofen therapy uses an day-to-day activities. trolene sodium, and are usually used implantable pump to deliver baclofen,

as the first line of treatment to relax stiff, con- a , into the fluid surrounding RECREATIONAL THERAPY tracted, or overactive muscles. Some drugs have the . Baclofen decreases the Encourages participation in art and cultural pro- side effects such as drowsiness, changes in blood excitability of nerve cells in the spinal cord, grams, sports, and other events that help an in- pressure, and risk of liver damage that require which then reduces muscle spasticity dividual expand physical and cognitive skills and continuous monitoring. Oral medications are ap- throughout the body. The baclofen pump is abilities. Research has shown improvement in propriate for children who need only mild reduc- most appropriate for individuals with chronic, their child’s speech, self-esteem, and emotional tion in muscle tone or with widespread spasticity. severe stiffness or uncontrolled muscle well-being. movement throughout the body.

3 COLUMBUS CIRCLE | 15TH FLOOR | NEW YORK, NY 10019 | PHONE 212 520 1686 | FAX 917 599 0431 VISIT CEREBRALPALSYFOUNDATION.ORG FOR MORE INFORMATION SURGICAL ASSISTIVE COMPLEMENTARY AND TREATMENTS DEVICES ALTERNATIVE

ORTHOPEDIC SURGERY COMMUNICATION Many children and adolescents with CP use some is often recommended when Devices such as computers, computer software, form of complementary or . spasticity and stiffness are severe enough to voice synthesizers, and picture books can Controlled clinical trials involving some therapies make walking and moving about difficult or pain- greatly help some individuals with CP improve have been inconclusive or showed no benefit ful. For many people with CP, improving the ap- communications skills. and they have not been accepted in mainstream pearance of how they walk – their gait – is also clinical practice. Although there are anecdotal important. Surgeons can lengthen muscles and reports of benefit in some children with CP, these tendons that are proportionately too short, which Orthotics help to compensate for muscle therapies have not been approved by the U.S. can improve mobility and lessen pain. Tendon imbalance and increase independent mobility. Food and Drug Administration for the treatment surgery may help the symptoms for some children Braces and splints use external force to of CP. Such therapies include hyperbaric oxygen with CP but could also have negative long-term correct muscle abnormalities and improve func- therapy, special clothing worn during resistance consequences. Orthopedic may be stag- tion such as sitting or walking. exercise training, certain forms of electrical gered at times appropriate to a child’s age and stimulation, assisting children in completing cer- level of motor development. Surgery can also cor- MOBILITY AIDS tain motions several times a day, and specialized rect or greatly improve spinal deformities in peo- , rolling walkers, and powered learning strategies. Also, dietary supplements, ple with CP. Surgery may not be indicated for all scooters can help individuals who are not including herbal products, may interact with oth- gait abnormalities and the surgeon may request a independently mobile. er products or medications a child with CP may quantitative gait analysis before surgery. be taking or have unwanted side effects on their VISION / HEARING own. Families of children with CP should discuss SURGERY TO CUT THE Glasses, magnifiers, and large-print books/ all therapies with their doctor. Selective dorsal (SDR) is a surgical computer typefaces assist with vision. Some procedure recommended for cases of severe individuals with CP may need surgery to correct Stem cell therapy is being investigated as a treat- spasticity when all of the more conservative vision problems. Hearing aids and telephone ment for cerebral palsy, but research is in early treatments–physical therapy, oral medications, amplifiers may help people hear more clearly. stages and large-scale clinical trials are needed and intrathecal baclofen–have failed to reduce to learn if stem cell therapy is safe and effective spasticity or . A surgeon locates and in humans. Stem cells are capable of becoming selectively severs overactivated nerves at the base other cell types in the body. Scientists are hope- of the spinal column. SDR is most commonly ful that stem cells may be able to repair damaged used to relax muscles and decrease chronic pain TREATMENTS nerves and brain tissues. Studies in the U.S. are in one or both of the lower or upper limbs. It is examining the safety and tolerability of umbilical also sometimes used to correct an overactive ALSO TARGET cord blood stem cell infusion in children with CP. bladder. Potential side effects include sensory loss, numbness, or uncomfortable sensations in OTHER limb areas once supplied by the severed nerve. IMPAIRMENTS IN ADDITION TO MOTOR DISABILITY

3 COLUMBUS CIRCLE | 15TH FLOOR | NEW YORK, NY 10019 | PHONE 212 520 1686 | FAX 917 599 0431 VISIT CEREBRALPALSYFOUNDATION.ORG FOR MORE INFORMATION ADULTS WITH CP THERE IS NO KNOWN The majority of individuals with CP will experience some form of premature aging by the time they reach their 40s due to the extra CURE FOR stress and strain the disability puts upon their bodies. The develop- mental delays that often accompany CP keep some organ systems CEREBRAL from developing to their full capacity and level of performance. As a consequence, organ systems such as the cardiovascular system PALSY (the heart, veins, and arteries) and pulmonary system (lungs) have to work harder and they age prematurely.

FUNCTIONAL ISSUES AT WORK and . Individuals with CP may use up The day-to-day challenges of the workplace are to three to five times the amount of energy that THE RATE OF DEPRESSION IS likely to increase as an employed individual with able-bodied people use when they walk and CP reaches middle age. Some individuals will be move about. 3 TO 4 TIMES able to continue working with accommodations such as an adjusted work schedule, assistive OSTEOARTHRITIS & DEGENERATIVE ARTHRITIS equipment, or frequent rest periods. Musculoskeletal abnormalities that may not HIGHER produce discomfort during childhood can cause IN PEOPLE WITH DEPRESSION pain in adulthood. For example, the abnormal Mental health issues can also be of concern as relationships between joint surfaces and exces- DISABILITIES someone with cerebral palsy grows older. The sive joint compression can lead to the early rate of depression is three to four times higher development of painful osteoarthritis and degen- SUCH AS CP in people with disabilities such as CP. It appears erative arthritis. Individuals with CP also may to be related not so much to the severity of their have limited strength and restricted patterns of disabilities, but to how well they cope with them. movement, which puts them at risk for overuse The amount of emotional support someone has, syndromes and nerve entrapments. OTHER MEDICAL CONDITIONS how successful they are at coping with disap- Adults have higher than normal rates of other pointment/stress, and whether or not they have PAIN medical conditions secondary to their cerebral an optimistic outlook about the future all have a Individuals with CP may have pain that can palsy, such as hypertension, incontinence, blad- significant impact on mental health. be acute or chronic, and is experienced most der dysfunction, and swallowing difficulties. Scoli- commonly in the hips, knees, ankles, and the osis is likely to progress after , when bones POST-IMPAIRMENT SYNDROME upper and lower back. Individuals with spastic have matured into their final shape and size. This syndrome is marked by a combination of CP may have an increased number of painful pain, , and weakness due to muscle ab- sites and worse pain than those with other types normalities, bone deformities, overuse syndrome, of cerebral palsy. Treatments include spasticity sometimes also called repetitive motion , management aimed at correcting skeletal and muscle abnormalities.

3 COLUMBUS CIRCLE | 15TH FLOOR | NEW YORK, NY 10019 | PHONE 212 520 1686 | FAX 917 599 0431 VISIT CEREBRALPALSYFOUNDATION.ORG FOR MORE INFORMATION KEY FACTS EVERY HOUR ANOTHER CHILD IS BORN CEREBRAL PALSY IS A PHYSICAL DISABILITY THAT AFFECTS MOVEMENT AND POSTURE WITH CEREBRAL IN MOST CASES, BRAIN INJURY LEADING TO CEREBRAL PALSY OCCURS DURING PREGNANCY PALSY

CEREBRAL PALSY, EXCEPT IN ITS MILDEST FORMS, CAN BE EVIDENT IN THE FIRST 12–18 MONTHS ASSOCIATED IMPAIRMENTS

GLOBALLY, OVER 17 MILLION PEOPLE HAVE CEREBRAL PALSY CHILDREN WITH CP ARE LIKELY TO ALSO HAVE OTHER IMPAIRMENTS IN ADDITION TO THEIR MOTOR DISABILITY 1 IN 500 BABIES IS DIAGNOSED WITH CEREBRAL PALSY

1 IN 2 PEOPLE WITH CEREBRAL MOTOR DISABILITY CAN RANGE FROM MINIMAL TO PROFOUND PALSY LIVE IN CHRONIC PAIN 1 IN 3 CANNOT WALK

THE RATE OF DEPRESSION IS THREE TO FOUR TIMES HIGHER 1 IN 5 CANNOT TALK IN PEOPLE WITH DISABILITIES SUCH AS CP 1 IN 10 HAS A SEVERE VISION IMPAIRMENT

1 IN 25 HAS A SEVERE CP IS A CONDITION THAT IS PERMANENT, BUT NOT UNCHANGING HEARING IMPAIRMENT

OF ALL CHILDREN WITH CEREBRAL PALSY, 60% ARE BORN AT TERM IT IS THE MOST COMMON PHYSICAL DISABILITY IN CHILDHOOD CURRENTLY, THE NUMBER OF PEOPLE WITH CEREBRAL PALSY IS EXPECTED TO INCREASE THERE IS NO KNOWN CURE

3 COLUMBUS CIRCLE | 15TH FLOOR | NEW YORK, NY 10019 | PHONE 212 520 1686 | FAX 917 599 0431 VISIT CEREBRALPALSYFOUNDATION.ORG FOR MORE INFORMATION