Cerebral Palsy (cont.)
IN THIS ARTICLE
Cerebral Palsy Prevention
Often the cause of cerebral palsy is not known, and nothing can be done to prevent it. However, some important causes of cerebral palsy can be prevented in many cases, including premature birth, low birth weight, infections, and head injuries.
What Is Cerebral Palsy Prognosis?
With proper therapy, many people with cerebral palsy can lead near-normal lives. Even those with very severe disabilities can improve their condition significantly, although they will never be able to live independently.
Approximately 25% of children with cerebral palsy have mild involvement with few or no limitations in walking, self-care, and other activities. Approximately half are moderately impaired to the extent that complete independence is unlikely but function is satisfactory. Only 25% are so severely disabled that they require extensive care and are unable to walk.
Of the 75% of children with cerebral palsy who are eventually able to walk, many rely on assistive equipment. The ability to sit unsupported may be a good predictor of whether a child will walk. Many children who can sit unsupported by age 2 years eventually will be able to walk, while those who cannot sit unsupported by age 4 years probably will not walk. These children will use wheelchairs to move around.
The likelihood of medical complications of cerebral palsy is related to the severity of the condition. Generally, the more severe the CP, the more likely are related conditions such as seizures and mental retardation. Individuals with quadriplegia are much more likely than those with diplegia or hemiplegia to have these related conditions.
Life expectancy in people with cerebral palsy also is related to the severity of their condition. People with milder forms of cerebral palsy have the same life expectancy as the general population. Those with severe forms of cerebral palsy typically have a shorter life span, especially if they have many medical complications.
With the advances in medical care and the awareness that children with cerebral palsy merit aggressive treatment of any acute condition that is treatable, the average life expectancy has increased. As a result, it is not unusual to see adults, even those with severe forms of cerebral palsy, reaching 50 and even the 60 years of age.
Adults with cerebral palsy are likely dependent on others for activities of daily living and in need of continuous support. The parents may be no longer alive or with limitations in the ability of providing support. Unfortunately, at the present time there are very few medical services that are oriented to treat adults with cerebral palsy. Historically, cerebral palsy has been a condition of children, however, at the present time there is a sizable and growing number of adults with cerebral palsy. In addition, there are few internists or general practitioners with expertise in CP. Just recently a few academic adult hospitals offer formal training positions in the area of developmental disabilities. These adults with cerebral palsy need strong advocacy to guarantee the services they need.
Some studies have found that abnormalities of muscle tone or movement in the first several weeks or months after birth may gradually improve over the first years of life. In one study, almost 50% of very young infants thought to have cerebral palsy and 66% of those thought to have spastic diplegia "outgrew" these signs of cerebral palsy by age 7 years. Many children do not manifest full motor signs that are suggestive of cerebral palsy until aged 1 to 2 years. Thus, some propose that the diagnosis of cerebral palsy should be deferred until the child is aged 2 years.
End of Life Issues
Counseling and advice is very important when individuals with cerebral palsy present with serious medical conditions. Unfortunately, some people will make decisions believing that persons with cerebral palsy have "a poor quality of life" to start with. This approach is very dangerous since it leads to the limitation of medical services offered to the person. In some instances it is appropriate to limit some medical options. For example, a person with severe scoliosis with distortions in the shape of the thorax may not be a good candidate for cardiorespiratory resuscitation because it could result in rib fractures and, in the end, it will be ineffective. Hospice care may be appropriate for a person with a terminal disease that has no treatment. However, certain medical conditions including pneumonia, sepsis, and cardiac insufficiency, can be treated. In these instances, the decision to treat or not to treat should not include as a factor the fact that the individual has cerebral palsy or cognitive deficiencies.
Support Groups and Counseling
Clearly, children with cerebral palsy may have very substantial problems, but almost all have the potential to learn, achieve, succeed, and create a happy life for themselves. This cannot happen without effort, and they need the help of their families. Having a child with cerebral palsy brings many challenges. It is understandable, then, that parents and siblings of a child with cerebral palsy may have significant stress. A parent may feel guilt, anger, anxiety, and/or hopelessness. The parent may feel alone and uncertain about what he or she should do.
Before parents can help themselves or their child, they need to develop appropriate expectations and get organized. Only then can parents learn practical ways to cope with the child's problems and put these methods into practice. But making changes is not always easy. Sometimes it helps to have someone to talk to.
This is the purpose of support groups. Support groups consist of people in similar situations. They come together to help each other and to help themselves. Support groups provide reassurance, motivation, and inspiration. They help parents see that their situation is not unique and not hopeless, and that gives them power. Support groups also provide practical tips on coping with cerebral palsy and navigating the medical, educational, and social systems that parents will rely on for help for themselves and their child. Being in a cerebral palsy support group is recommended by most mental health professionals.
Support groups meet in person, on the telephone, or on the Internet. To find a support group that works, contact the following organizations. Parents can also ask a member of their child's care team or go on the Internet. If parents do not have access to the Internet, they should go to the public library.
Medically reviewed by Joseph Carcione, DO; American board of Psychiatry and Neurology
Medically Reviewed by a Doctor on 9/16/2016
Norberto Alvarez, MD
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