What is CP?

Cerebral palsy (CP), a disorder caused by damage to the brain, especially affecting ability to control movement and posture. Palsy is a synonym for paralysis, although a more accurate description of the usual muscular symptoms might be weakness (paresis), and inability to make voluntary movements and suppress involuntary ones.

Depending on the location and extent of the damage, cerebral palsy can be mild, revealing itself as a kind of awkwardness, or severe, largely incapacitating a child from infancy. It is sometimes associated with other problems such as seizures (epilepsy), mental retardation, ear and hearing problems, eye and vision problems, communication problems (see communication skills and disorders), and impairment of other senses. Some of the children most severely affected with cerebral palsy may not survive infancy, but most will have a normal life span.

Cerebral palsy is not contagious. It is not progressive-it does not get worse as time passes, and may instead improve somewhat with therapy (see below). It is not inherited, except in rare cases where it is associated with a genetic disorder, notably Lesch-Nyhan syndrome.

Most cases are caused by brain damage during pregnancy, childbirth, or the neonatal period (just after birth); this is called congenital cerebral palsy, because it is present at or around the time of birth. However, approximately 10 percent of the cases are acquired cerebral palsy, in which CP has been triggered by events after birth, such as a traumatic brain injury, infections such as meningitis, and other types of brain damage, including injury from child abuse and neglect.

Just why CP occurs is far from clear. Approximately 58% of the cases of cerebral palsy occurred in children who were born at full term and full weight, and in whom doctors could discern no cause of brain damage, at the present state of knowledge and technology. However, studies have shown that numerous conditions are risk factors for cerebral palsy, not necessarily leading to it, but increasing the risk that a child will have it. Among the main risk factors are:

• Infections in the mother during pregnancy, including rubella (German measles); sexually transmitted diseases such as gonorrhea, chlamydia, and syphilis; and various other bacterial and viral infections, some of which attack the baby's nervous system.

• Premature birth.
• Low birth weight, though some infants who weighed under 2 pounds at birth and spent months in neonatal intensive care have been unimpaired.
• Difficult or abnormal delivery, especially awkward fetal presentation (position at birth), lengthy or too abrupt labor, or obstruction of the umbilical cord.
• Hypoxia, or insufficient oxygen, in the brain, for a variety of reasons, such as premature separation of the placenta during delivery or swelling of the brain due to illness.
• Incompatability between parents' and fetus's blood types, especially Rh incompatibility.
• Jaundice of the newborn or hyperbilirubinemia (see liver and liver problems), sometimes associated with Rh incompatibility.
• Medications and drug abuse taken by the mother.
• Lead poisoning.
• Smoking by the mother.
• Alcohol abuse by the mother.

With increased knowledge, developing technology, and enhanced prenatal care, the risks of CP can be much diminished, even if it cannot be completely prevented. Precise figures are hard to come by, because of the wide variation in the disorder and lack of requirement that doctors report it, but the United Cerebral Palsy Association estimates that approximately 3000 infants are born with cerebral palsy each year, and some 500 other preschool-age children later acquire the condition.

Cerebral palsy is generally recognized in the early years, as developmental delay becomes apparent. Though various kinds of medical scans can help doctors identify some brain abnormalities, the disorder is most often seen in its symptoms. These may include:

• Retention of primitive reflexes, involuntary reactions to particular stimuli that are normally found only in newborns.
• Muscular weakness and "floppiness" (hypotonia).
• Assumption of abnormal, awkward positions, which (if uncorrected) can lead to skeletal disorders.
• Favoring one side of the body over the other.
• Poor muscle control and lack of coordination.
• Muscle spasms or seizures.
• Problems with sucking, chewing, and swallowing.
• Unusual tenseness and irritability in infancy.
• Inability to control bladder and bowels (incontinence).
• Difficulty in speaking.
• Difficulty in concentrating, which has adverse effects on learning.
• Trouble in interpreting sense perceptions, such as inability to identify objects by touch.
• Other problems with the senses, especially hearing and vision.

Some of children may show serious symptoms at birth; some may not show any clear signs for a long time. Most children with cerebral palsy are diagnosed by age 5. It is important to diagnose the disorder early so that therapy can minimize handicaps, learning is not hindered, and the child (and parents) can adjust more readily.

Doctors classify cerebral palsy in two ways: by the affected limbs and by the nature of the movement disturbance:

By affected limbs:

• Diplegia, where limbs on opposite sides are affected, such as both legs.
• Hemiplegia or hemiparesis, where the arm and leg on one side are affected.
• Quadriplegia or quadriparesis, where all four limbs are affected

By the nature of the movement disturbance:

• Spastic cerebral palsy, where muscles are tense, contracted, and resistant to movement; the most common form of cerebral palsy, especially in low birth weight or premature babies.
• Athetoid cerebral palsy, where the affected parts of the body perform involuntary writhing movements, such as turning, twisting, facial grimacing, and drooling, often associated with jerky, abrupt, flailing motions (chorea). This form of cerebral palsy generally involves damage only to the motor centers, not to other parts of the brain, but the unknowing often take such "strange" and "unnatural" movements as signs of mental or emotional disturbance.
• Ataxic cerebral palsy, where the main characteristic is lack of balance and coordination and disturbed depth perception, due to damage to the cerebellum. Ataxia involves trouble maintaining balance and swaying when standing.
• Rigidity, where muscles are extremely tight and resistant to movement.
• Tremor, where muscles uncontrollably shake, interfering with coordination.

Sometimes several areas of the brain are involved, so the description of a particular child's condition may involve several of the above terms and symptoms.

No cure exists for cerebral palsy, but various kinds of therapies are used to help each child do as much as he or she is capable of doing. Among these are:

• Physical therapy, the use of therapeutic exercises and activities to extend the child's range of controlled movement, generally focusing on gross motor skills. Some of these use the Bobath technique, in which exercises first focus on countering primitive reflexes and then on extending the range of voluntary movement, sometimes with the help of behavior modification, offering positive reinforcement to help children act against the body's awkward inclinations. Physical therapists also help children learn how to use orthopedic devices, such as wheelchairs and walkers.
• Biofeedback, in which children are given information about the functioning of a particular part of the body, often by electrical machines that produce visual or auditory signals, and are taught to concentrate on changing the visual picture or sound. Through such techniques, children with cerebral palsy can gain increased control over movements and are sometimes able to do things like drink from a cup or control their bladder-things previously beyond their range of skills.
• Occupational therapy, the use of therapeutic exercises and activities to extend the child's range of controlled movement, generally focusing on fine motor skills, many of them self-help skills. For children that may mean learning how to dress themselves, comb their hair, brush their teeth, drink from a cup, or hold a pen or pencil. For young adults that includes preparation for living as self-sufficiently and independently as possible (see vocational rehabilitation services).
• Speech and language therapy, which can help children overcome some speech and hearing impairments, and also learn to use the great variety of mechanical and electronic devices that have been developed to help them, such as voice synthesizers or specially adapted computers (see ear and hearing problems; communication skills and disorders).
• Drugs, including muscle relaxants for spastic muscles and anti-seizure drugs, if epilepsy is involved. Drugs are best used sparingly, however, since the long-term side effects on the already-damaged and still-developing nervous system are unknown.
• Surgery,
• Orthopedic devices, such as wheelchairs, walkers, page-turners, specially equipped automobiles, and the like.

Many physical therapists stress that a varied and stimulating environment is in itself a powerful "treatment" for the child. Also important to both child and family are counseling, which can offer emotional support and relief of stress, advice on handling practical problems, and training to prepare for the future, as the child grows into an adult. Many public and private organizations also provide financial assistance, diagnostic and treatment centers, vocational training and guidance, respite care for families of children with cerebral palsy, special recreational facilities, adapted work settings, and adapted living arrangements.

For help and further information:

United Cerebral Palsy Association (UCPA)
1660 L Street, NW, Suite 700
Washington, DC 20036-5602
202-776-0406; 800-USA-5UCP [872-5827] voice/TT
Fax: 202-776-0414
Internet E-mail: ucpa@aol.com (America Online: UCPA)
John D. Kemp, Executive Director

Organization concerned with cerebral palsy and related handicaps; provides information and referrals; acts as advocate; sponsors research; publishes many materials, including Children with Cerebral Palsy: A Parents' Guide, Handling the Young Cerebral Palsied Child at Home, After the Tears: Parents Talk About Raising a Child with a Disability, Each of Us Remembers: Parents of Children with Cerebral Palsy Answer Your Questions, I Wish: Dreams and Realities of Parenting a Special Needs Child, I Raise My Eyes to Say Yes: A Memoir, A Mother's Touch: The Tiffany Callo Story, about a woman with CP who had to go to court to regain her right to raise her children, and Walk with Me (by an 8-year-old with CP).

• National Institute of Neurological Disorders and Stroke (NINDS), 800-352-9424. Publishes brochure Cerebral Palsy: Hope Through Research. (For full group information, see brain and brain disorders.)
• Shriner's Hospitals for Crippled Children, 800-237-5055. Provides free medical care for children with orthopedic problems. (For full group information, see bone and bone disorders.)
• Pediatric Projects, 800-947-0947. Publishes reprint Raising a CP Child in a Rural Area. (For full group information, see hospital.).
• National Information Center for Children and Youth with Disabilities (NICHCY), 800-695-0285, voice/TT. Publishes Cerebral Palsy.
• National Easter Seal Society, 800-221-6827. Publishes Understanding Cerebral Palsy.
• American Association of University Affiliated Programs for Persons with Developmental Disabilities (AAUAP), 301-588-8252.
• National Organization for Rare Disorders (NORD), 800-999-6673. (For full group information, see rare disorders.)

 

Other resources:

For parents:

• Coping with Cerebral Palsy: Answers to Questions Parents Often Ask, 2nd ed. Jay Schleichkorn. PRO-ED, 1993.
• Children with Cerebral Palsy: A Parents' Guide. Elaine Geralis, ed. Woodbine House, 1991.

For children and preteens:

• Yes, I Can: Challenging Cerebral Palsy. Doris Sanford. Questar, 1992.
• Going Places: Children Living with Cerebral Palsy. Thomas Bergman. Gareth Stevens, 1991.
• Arnie and the New Kid. Nancy Carlson. Viking, 1990.

For teens:

• Cerebral Palsy. Nathan Aaseng. Watts, 1991.

Personal experiences:

• Journey into Personhood. Ruth C. Webb. University of Iowa Press, 1994.
• Standing Tall. Paul Harasim. WRS Group, 1993. About a boy's fight to play in the Little League.

Background books:

• Cerebral Palsy: The Child and Young Person. L. Cogher. Chapman and Hall, 1992.
• The Natural History of Cerebral Palsy. Bronson Crothers and Richmond S. Paine. Cambridge University Press, 1991.

 

 

Will My Child Ever Walk?

The diagnosis of cerebral palsy is always upsetting and parents are inevitably anxious and concerned over the future. Will the child ever talk? Walk? Go to college? Be able to work? In mild cases the doctor can usually be reassuring. But often there are no simple answers. Every individual with cerebral palsy presents a unique set of symptoms along with a unique capacity and potential for coping. A lot may depend on rehabilitation and education programs; a lot on the cooperation and positive but realistic attitudes of all concerned. Some physicians generalize that if a child can sit up unsupported by the end of the second year, or stand by age 3, the chances for independent walking are good. But there are always exceptions. Sometimes orthopedic surgery may be necessary. Almost always there will be a need for a coordinated treatment program provided by a team of skilled professionals. Still, not all children may respond.

Coordinated programs are available through the physical medicine and rehabilitation department of hospitals, state crippled children's programs, and a variety of clinics or centers for the handicapped financed by public or private agencies. Both the United Cerebral Palsy Associations, Inc., and the National Easter Seal Society, Inc., have local chapters and clinics throughout the country. In addition, special programs are available to assure that no handicapped person is denied free public education.

At the same time, it is important to maintain a stable and reassuring home environment. The presence of a handicapped child is hard on all members of the family. Parents may quarrel or feel guilty, and occasionally experience such strain that the marriage is threatened. Parents are sometimes overprotective and pampering, creating serious personality and behavioral problems for the child, and leading brothers and sisters to feel denied attention and love. In a few instances parents may be rejecting or show indifference to the handicapped child. Excellent advice comes from the mother of a child with cerebral palsy: "If the parents accept the child, the child will then accept himself." Many agencies and clinics providing treatment for individuals with cerebral palsy include social workers or psychologists skilled in family counseling, or else can refer families to appropriate professionals to guide families through the initial adjustment and as problems arise.

The combined education and rehabilitation programs currently available will enable some children to progress to excellent control over their bodies and a nearly normal life. Those with more severe handicaps may be able to move from bed to wheelchair or from wheelchair to braces or other mechanical aids. Most authorities agree that progress in overcoming handicaps is harder if there are mental impairments.

Source: Cerebral Palsy: Hope Through Research. (1980) Prepared by the National Institute of Neurological and Communicative Disorders and Stroke for the Public Health Service.

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