When Your Child has More than Just Seizures – Epilepsy Foundation

Children with epilepsy who also have an intellectual disability ormental handicap (a term preferred over the older term, "mental retardation") or cerebral palsy present a wider range of problems than children who have uncomplicated epilepsy. Children with mental handicaps have below-average intellectual ability and are often impaired in their ability to understand, communicate, solve problems, and function in social settings. Children with cerebral palsy have muscle weakness, difficulty standing or walking, or postural problems. Their intelligence may range from average to below average. Intellectual disabilityand cerebral palsy can also be associated with vision, hearing, and speech problems and possibly some physical deformity or emotional disturbance. Management of children with epilepsy and mental handicap or cerebral palsy requires the combined effort of doctors, therapists, education specialists, and parents.

When a child is born with a disability, the parents' distress is severe. The feelings of guilt, shame, despair, and self-pity can be overwhelming, and the agony of longing for a way out can be excruciating. Torturing questions tend to flood the parents' minds: What did I do wrong? Why did this happen to me? The turmoil may give way to sadness, a feeling of desolation and isolation, and a longing for the lost, healthy baby.

The way in which the parents adjust to the situation is crucial for the future welfare of not only the handicapped child but also the whole family. The child needs to be loved and accepted as any other child would be. When mutually enjoyable relationships develop between the child and the family, the child's personality is allowed to develop in the most favorable environment. Whether a child is healthy or handicapped at birth, he or she will most easily achieve happiness and a satisfying adult social role if brought up in a loving, contented, and intact family.

Adjusting to the shock of being told about the child's disability is difficult, but families can receive assistance, support, and education from United Cerebral Palsy or The Arc of the United States, a national organization for people with mental retardation and related developmental disabilities and their families. As the distress lessens, the family must take stock of itself in relation to the task of doing its best for the new handicapped child. The child with intellectual disability or cerebral palsy and epilepsy has the same emotional needs as other children. He or she needs love but not smothering, care but not over-indulgence, and above all, opportunities for achievement, self-control, and social growth toward an independent place in adult society.

The parents of a child with disabilitiesare faced with the question of what to tell relatives, friends, and neighbors. The best answer is the truth. Friends and neighbors are bound to visit when the baby comes home from the hospital, and failure to tell them at once of the child's disability will only make it more difficult later. As naturally as they can, parents should tell all who ask, including their other children, that the doctors think the baby has weak arms and legs, or is severely mentally and physically handicapped, or has seizures, and treatment has begun. Few people will fail to be helpful and sympathetic. If the child's disorder only becomes apparent and clearly diagnosed months or even years after birth, it is still wise to tell the truth.

Mental handicap or "mental retardation" are terms that can beloaded with fear for parents. In the past, "mental retardation" usually implied mental incompetence and the child was often placed in an institution. Mental handicap means slowed or delayed mental development. Currently, the term intellectual disability is used to reflect the diverse ways that children may be affected.Children with an intellectual disabilityare not incapable of learning; they just do not learn as rapidly as other children, or to the same extent.

Approximately 2% of children in the general population are affected by mental handicap, whereas up to 25% of children with cerebral palsy are affected. Among children with epilepsy, mental handicap occurs in 9%. For those children who have epilepsy, intellectual disability or mental handicap is more common with the following factors:

Parents need to keep in mind that the usual IQ test is based on an established method of measuring a broad range of cognitive functions like math, reasoning and logic, and spatial skills, as well as the fund of knowledge. Children with cerebral palsy may need to be evaluated using other standardized tests so their movement impairments do not interfere with test-taking performance. Children with epilepsy require an evaluation by a neuropsychologist (an expert in assessing brain function) to adequately determine their individual strengths and weaknesses and make recommendations about schooling.

Mental handicap is classified as:

If a child with epilepsy scores in the mentally handicapped range, his or her cognitive development (intellectual functions) will be slower than that of other children of the same age. However, as in children without physical or mental handicaps, children with mental handicap have a range of abilities.

The IQ score is only one measure of intelligence. Psychologists can also measure a child's adaptive level, or ability to manage common daily activities such as feeding, dressing, toileting, and social interaction. Handicapped children with movement problems may be delayed in these areas. The accuracy of these tests depends on the expertise and experience of the test administrators. Obtaining an accurate picture of a child's potential requires an assessment by professionals from different fields. By integrating the different observations and test results, these professionals can reach a depth of understanding that could not be provided by one person. What mental handicap means for a child depends on the nature and severity of the problem.

Although a child's IQ may place restrictions on what he or she learns and the rate at which he or she learns it, early intervention and special education programs can reduce the impact of mental handicap. Programs can tailor the curriculum so that children can learn at a rate that gives them confidence in their emerging new abilities. Therefore, parents must recognize their child's developmental strengths and weaknesses so that they can help plan an educational program that will help achieve their child's potential. When the curriculum is appropriate, a child is less likely to experience stress and more apt to appreciate his or her own achievements. Skill development, not high scores on intelligence tests, should always be the goal. Even though a handicapped child's pace of learning may be slower than other children's, the achievements are just as meaningful.

Parents of children with epilepsy who also have mental handicap must remember that they learn new skills more slowly than other children and find it harder to master advanced skills such as reading, mathematics, and complex problem solving. They also may not be as motivated as other children to learn new skills, but it does not mean that they cannot learn. Given a good educational program and support from family and friends, almost all children can make important, steady progress in intellectual abilities.

About 25% to 35% of all children with cerebral palsy have epilepsy. A much smaller proportion of those with epilepsy have cerebral palsy. Epilepsy and cerebral palsy are separate disorders, but both can result from the same abnormality of the brain. Epilepsy does not cause cerebral palsy. Cerebral palsy does not cause epilepsy. The two conditions simply coexist, and are differing signs of a brain abnormality or malfunction.

Cerebral palsy is not a specific medical diagnosis, but rather a descriptive name given to a group of disorders that affect control of movement and result from an abnormality of the central nervous system (the brain and spinal cord). The disorder is referred to as "stable" or "static" because the condition does not worsen over time. The abnormality may occur while the fetus is in the womb, during or shortly after birth, or during the first year of life. Even when an injury occurs in the womb or at birth, not all children born with cerebral palsy show any clear signs of the disorder immediately after birth, and the symptoms vary in severity depending on the type and degree of abnormality involved.

Usually, the child's intellectual functioning is not diminished by the disorder. However, mental handicapoccurs in approximately one third of children with cerebral palsy, and some children with cerebral palsy and epilepsy are also mentally handicapped. The major problems for children with cerebral palsy are poor muscle control such as difficulty in sucking or holding up the head, delay in rolling over, delay in walking or inability to walk, incoordination, muscle tightness, and muscle weakness.

Cerebral palsy is classified according to six principal abnormal movements, all of which are not under a person's voluntary control; that is, they are involuntary movements. Many children with cerebral palsy have a combination of the movements, and their symptoms may vary from time to time. The abnormal movements are:

There are two main types of cerebral palsy: pyramidal and extrapyramidal. The pyramidal and extrapyramidal systems are the two principal systems of the brain and spinal cord that control movement. The pyramidal system is primarily concerned with strength and control of fine movements of the arms and legs, especially the hands and feet. The extrapyramidal system is primarily concerned with more basic aspects of movement and exerts greater control over muscles of the body, shoulders, and hips, although it also controls muscles in the arms and legs. Many children with cerebral palsy and epilepsy have overlapping features of these two types. Children with either type of cerebral palsy may have ataxia, tremor, or other impairments such as mental handicap.

More than 80% of children with cerebral palsy have the spastic form, a pyramidal type of cerebral palsy that occurs either alone or in combination with the extrapyramidal type. These children usually have weakness, increased muscle tone (spasticity), and increased reflexes (as when the doctor taps the knee and the leg jumps forward, for example). The injury in this disorder is either to the brain cells in the frontal lobe area that control voluntary movement or to the nerve fibers that pass from this area into the spinal cord. Different patterns of damage give rise to different types of impairment:

Hemiparesis refers to weakness on one side of the body (hemi = half; paresis = slight or incomplete paralysis). This is the most common form of spastic cerebral palsy, and most often results from an injury to the opposite side of the brain. The damage may affect either the motor area of the brain, the nerve fibers, or both. Stroke from blockage of a blood vessel or bleeding in the brain is the most common cause of hemiparesis. Other causes include traumatic injury or an abnormality in brain development. In most children with spastic hemiparesis, the arm is weaker than the leg, with the hand often being severely impaired. Depending on how severely the leg is affected, children with spastic hemiparesis can usually walk, but with a limp. Braces for the ankle or an operation to release tight tendons can improve the child's ability to walk. Because the injury is restricted to one area of the brain, most children with spastic hemiparesis are not mentally handicapped.

Because the cerebral cortex of the brain is often damaged, children with spastic hemiparesis commonly have epilepsy. The seizures are partial seizures and are treated with medications for partial epilepsy. The seizures usually can be controlled with antiepileptic drugs, but if not, surgery can be considered.

In children with diplegia, both legs are weak and stiff (di = two; plegia = paralysis). The arms usually function well and may be entirely normal. Diplegia most often occurs in children who are born prematurely, and usually results from injury to the nerve fibers in the deep parts of the brain. Because the cerebral cortex is usually not affected, neither seizures nor mental handicap are common.

The main problem for children with diplegia is walking. Physical therapy, leg braces, orthopedic surgery, or the use of a wheelchair can improve function and the quality of life.

Quadriparesis refers to weakness of all four limbs (quadri = four). In this severe form of cerebral palsy, the injury often affects multiple and widely distributed areas of the brain. The weakness is often severe and affects not only the limbs but also the muscles of the trunk, neck, mouth, and face. In addition to a severe movement disorder, the children often have epilepsy and mental handicap that are also severe.

The seizures in children with the spastic quadriparetic form of cerebral palsy usually begin early (during the newborn period or in the first year of life) and may be difficult to control with seizure medicines. The first seizures are often infantile spasms, followed later by Lennox-Gastaut syndrome, with various types of seizures that are only partially controlled with medications.

The extrapyramidal type of cerebral palsy is characterized by involuntary abnormal movements, which include dystonia (sustained postures, such as the fingers curled up), athetosis (wormlike, writhing movements), chorea (irregular, minor jerks or dancelike movements), and tremor. The extrapyramidal motor system is deep within the brain. Because it is so far removed from the cerebral cortex, mental handicap and seizures are uncommon in children with this type of cerebral palsy. They do often have impaired balance and coordination, however.

In the past, this type of cerebral palsy often occurred when babies born with blood types different from their mothers' (Rh incompatibility) had severe metabolic changes that injured the extrapyramidal parts of the brain. Better care of this problem has now made extrapyramidal cerebral palsy less common. Extrapyramidal types now account for about 20% of children with cerebral palsy. About half of these have only extrapyramidal problems, whereas the other half also have the pyramidal type. Those who have both types are said to have mixed cerebral palsy.

Treatment of children with cerebral palsy and epilepsy varies according to their age, the severity of their symptoms, and the type of cerebral palsy. Common steps include:

Comprehensive child development clinics (centers for neuromuscular and developmental disorders) can help with many parts of this treatment. They can identify, assess, and diagnose children's general health conditions; identify emotional and learning problems; refer children with particular problems to specialists; provide instruction and counseling for parents; serve as a source of referrals to other programs; and provide physical, occupational, and speech therapy.

Exercise is an essential part of the therapy for children with cerebral palsy. Babies who are developing normally are seldom still; their arms and legs are in almost continuous motion. As they roll, crawl, get into and out of sitting positions, and reach for objects and manipulate them, they are exercising without making a conscious effort. For babies with cerebral palsy, this kind of healthy, spontaneous exercise is more challenging. Some may be capable of only a few movements, so these babies are often relatively inactive. But children with cerebral palsy must have exercise. Movement through all ranges of motion can prevent contractures or joint limitations and help the child's body maintain its potential. Weight-bearing exercises can prevent bone loss. And the input from exercise is an important building block for the future development of motor and cognitive skills.

The parents of a child with epilepsy and cerebral palsy must make sure the child gets enough exercise. If the child is passive and content to lie back and watch the world go by, the parents need to encourage activity.

For young children with cerebral palsy, one of the best ways to do this is through the roughhouse play that other children instinctively make a part of their regular exercise. The touch and movement that are so much a part of this type of play are essential to the development of normal systems of touch, balance, and the sense of head and body position. A child can enjoy roughhousing if the parents keep in mind the principles of good handling and pay attention to the child's body. For example, if rapid movements such as playfully raising and lowering make the child stiff, it is better to try a slower activity involving some trunk rotation and leg separation, which should decrease the child's muscle tone (the firmness and consistency of muscles at rest and with movement) and thus reduce the child's stiffness. A good alternative might be the merry-go-round, in which the parent holds the child face-to-face with the child's legs straddling the parent's waist and twirls around. In general, children with increased muscle tone (stiff or rigid muscles) respond better to a slow pace and those with low muscle tone, who are floppy or hypotonic, generally respond well to fast movements.

Ideally, much of the child's exercise should come from the daily routine of such activities as diapering, dressing, and feeding. Two general guidelines in accomplishing this goal are:

The child's occupational and physical therapists can provide additional tips on increasing the exercise that the child gets in the daily routine.

Some parents of children with epilepsy and cerebral palsy also enroll the child in formal physical fitness programs. Gym classes, movement experiences, Special Olympics, and other programs for young children are blossoming, and many are quite receptive to children with special needs. It is not absolutely essential to find a program with a staff trained in dealing with these children, although the instructor should be helpful and cooperative. Generally, it will be up to the parent to apply the correct principles to reduce or increase muscle tone and encourage normal movement. The physical or occupational therapist can tell parents whether the child might benefit from any program being considered.

As the child grows older, it becomes increasingly important for the exercise routine to include outdoor activities. Walks with the child in a stroller or in a carrier on the parent's back provide fresh air and opportunities for learning about the world outside the house. For some children, just lying or sitting on the grass while parents do yard work can be a special event. Outdoor smells, sights, and sounds all stimulate the child's developing sensory system. With proper precautions, the child may also enjoy riding on the back of the parent's bicycle. Parents may have to be creative in thinking of outdoor play activities that are within the child's abilities, but because playing outdoors is the most enjoyable form of exercise for many children, the more activities parents can come up with, the better. For example, horseback riding can provide both good physical therapy and fun for children with cerebral palsy. As with many other aspects of raising a child with cerebral palsy, much trial and error is involved in finding enjoyable exercises that are right for the child.

Some children with epilepsy and cerebral palsy have average or close-to-average intelligence and mild to moderate physical problems. These children usually achieve independence during later adolescence and adulthood.

Others are not so fortunate. Children who are also mentally handicapped and whose physical problems limit their mobility or prevent the mastery of self-help skills will continue to depend on others to some extent for the rest of their lives. The parents of these children should try to help them become as independent as possible.

The need for special education or other services depends on how the disorders affect people with epilepsy and cerebral palsy. These services can be provided through the school system, employment programs, and residential or community-based programs. In addition, programs such as the Special Olympics (www.specialolympics.org) can allow children with epilepsy and cerebral palsy to participate in athletics, to excel at their own level, and to enjoy the excitement and self-esteem of accomplishment.

The "education" of children with cerebral palsy and epilepsy may begin shortly after birth. Many children begin receiving services through infant stimulation programs soon after the diagnosis is made. The best infant stimulation programs almost always involve the parents as teachers of their own children. These programs stress stimulation of the child's senses of vision, hearing, smell, and touch, and include activities that promote language, cognitive, social, and self-help development. Some programs include specialists such as physical or speech therapists, in addition to specially trained teachers. Most parents are very receptive to infant stimulation programs because their involvement fulfills their need to "do something" to help their children.

Children with cerebral palsy and epilepsy may be educated in regular classes, but they are eligible for special education programs under the Individuals with Disabilities Education Act (IDEA).

In the past, people with epilepsy whose cerebral palsy was severely disabling were excluded from receiving vocational training services because they were unlikely to achieve the goal of competitive full-time or part-time employment. Those who had only epilepsy were often excluded for the same reason. The Individuals with Disabilities Education Act (IDEA) has made services and training available to people with severe disabilities. They are eligible even if the most they will achieve is "supported employment," which means employment in a setting with a job coach, special training, or other services that allow an individual to perform work.

The department of vocational rehabilitation in each state, sometimes called "DVR," "OVR," or "Voc Rehab," are charged with carrying out the law. Under these programs, adults with epilepsy and cerebral palsy can continue to receive vocational education after they reach age 21. The state vocational rehabilitation department, United Cerebral Palsy (UCP), or a local UCP affiliate can be contacted for specific information on available services.

The Workforce Investment Act of 1998 established "one-stop shopping" resource centers for employment services, educational services, training and placement, and vocational rehabilitation. Each state has a program (see map of links). These may also be useful resources for people with cerebral palsy and epilepsy who are seeking employment.

New trends are emerging in efforts to enable people with epilepsy and other disabilities to live independently and productively. The focus of these efforts is to help people with disabling conditions to overcome the physical limitations that in the past too often meant lives spent in institutions.

Personal assistance services are available for those who need help with daily care and mobility in order to live in the community. In some programs, a personal assistant can help with cooking meals, cleaning house, and grooming so that a person with cerebral palsy can live independently. The extent to which Medicaid will help fund these programs varies from state to state.

Another trend is the movement away from caring for people with severe cerebral palsy and epilepsy in large public or private facilities, called intermediate care facilities. Instead, funding and services are provided for independent living within the community. State-run programs for adults with epilepsy and cerebral palsy should provide a variety of community living and working arrangements.

Protecting the rights of people with epilepsy and cerebral palsy to employment and equal opportunity in the community is of utmost importance. In 1990, the Americans with Disabilities Act was passed to protect people with disabilities from discrimination in employment, public accommodations, transportation, telecommunications, and other areas. The Epilepsy Foundation may be helpful in providing additional information.

Persons with cerebral palsy and epilepsy have the same right as everyone else to obtain a driver's license if their seizures are completely controlled for a specific period (usually 3 months to a year). If they can pass the written test (given verbally if the person is unable to write) and the driving test, persons with these disorders can obtain a license to drive.

Two federally funded income maintenance programs can provide additional income to persons with cerebral palsy, mental handicap, or both: Supplemental Security Income (SSI), a public assistance program, and Social Security Disability Insurance (SSDI), a disability insurance program. Both provide a monthly income to qualified people with disabilities. The regulations of the Social Security Administration (www.ssa.gov) prescribe a set of tests for making the determination of disability. The test of severity is somewhat different for children and adults. A child with epilepsy and cerebral palsy meets the test of severity if he or she has severe motor impairment (dysfunction) or less severe motor impairment with cognitive impairment (IQ of 69 or less) and a seizure disorder (major motor seizures with disabling episodes, major motor seizures with a significant communication deficit, or a significant emotional disorder, or minor motor seizures with loss of consciousness).

Under current rules, an adult with epilepsy may qualify as having a disability if the Social Security Administration determines that he or she has more than one generalized tonic-clonic seizure (loss of consciousness and convulsions) per month or one complex partial seizure (alteration of awareness or consciousness) per week. In either situation, the seizures must persist for at least 3 months after treatment begins and be documented by a health care professional. Some people with both epilepsy and cerebral palsy can qualify without meeting these frequency requirements. In any case, there are income restrictions on who can receive payments. An adult must earn less than the current level of an official statistic called the substantial gainful activity level. Because regulations may change, it is always wise to check with the Social Security Administration on the rules presently in effect.

The Medicare and Medicaid programs are important to people with epilepsy and cerebral palsy, but each has its own eligibility requirements and rules for recipients. Both of these programs may be available to children with disabilities who are under 18 years of age. Medicaid provides medical assistance to people who are eligible for SSI and to other people with incomes that are insufficient to pay for medical care. Because eligibility is based on financial need, placing assets in the name of a child with epilepsy and cerebral palsy or providing the children with income through a trust may mean disqualification. However, trust funds designed to supplement benefits may not be disqualifying if they are properly drawn up. Medicare is not based on financial need. Anyone entitled to receive Social Security benefits is also entitled to Medicare coverage after a 2-year waiting period.

The outlook for children with epilepsy and cerebral palsy has never been brighter. Advanced therapeutic and surgical techniques are helping to minimize the effects of cerebral palsy and its complications, and new medications and treatment methods are helping to control seizures. In addition, special equipment is helping children with these disorders to unlock their potential as never before. For example, computers are giving voices to children who might not otherwise be able to speak, and devices made from lightweight plastics and metals are granting new freedom of movement to children with limited motor skills.

Increased opportunities in education are helping these children make giant steps toward conquering the effects of their disabilities. Another bright spot is that their parents are taking increasingly larger roles in helping the children reach their potential. For example, therapists now routinely train parents to reinforce their child's movement and speech skills at home. Teachers usually confer with parents when deciding how and what these children should learn in school. Most professionals recognize that parents are the experts on their child's special needs and are often able to help the child receive the most appropriate services. These parent-professional partnerships naturally foster greater progress.

Some children with epilepsy and cerebral palsy graduate from regular academic high school programs and go on to college. Others succeed in completing vocational high school programs. Still others spend their school years in programs designed to help them become as self-sufficient as possible. Likewise, some children with epilepsy and cerebral palsy grow up to hold jobs that enable them to support themselves. Others need varying amounts of financial help throughout their adult lives.

Today, many children with epilepsy and cerebral palsy have the potential to live rich, fulfilling lives and to enjoy good health, good friends, and good feelings about themselves and their accomplishments. The right therapeutic and educational programs will start these children on the road to a rewarding future; motivation and support will keep them on track.

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When Your Child has More than Just Seizures - Epilepsy Foundation