Health

Constipation is a very frequent issue. This seems to be due to a combination of factors. Contributing to this is a decrease in actual physical movements of the body with less crawling, rolling, walking and moving around in general. Decrease in liquid intake is a frequent contributor whether due to incoordination of swallowing, inability to ask for a drink, inability to get a drink for one's self or even to a conscious desire to minimize drinking so that there would be less need to urinate. There may be changes in the musculature involved in the gastrointestinal tract.

Several steps may be useful for intervening in bowel problems. First, having satisfactory intake of water and juice can sometimes take care of this problem. Sometimes, this is by mouth and sometimes this is from a feeding tube. Also increasing fiber intake by trying to have cereals, fruits, vegetables and grains in the diet can improve bowel movement. Classically, prunes or prune juice can also be of value. Each family will usually find what works for their particular situation and hopefully it will be something that is enjoyable to eat or drink as well. If this cannot be improved by juices, sometimes lying on the left side with the knees curled up towards the body can be a useful position to help the bowels empty.

Medications are frequently used for this as well, including Colace as a softener. Senna is used as a bowel stimulant, which is relatively gentle. Dulcolax tablets or Miralax can be used as more vigorous bowel stimulants. The use of a pediatric glycerin suppository may also be effective intermittently. The occasional use of an enema may be required and effective but should not be used on a frequent basis for small children due to potential electrolyte disturbances. When working on a bowel program, it is useful to remember that babies frequently have a bowel movement after they feed. This is due to the gastrocolic reflex.

This reflex is useful in trying to set up a good bowel program in almost anyone. This means that it is easier to train the body to have a bowel movement right after one has a meal and it is important to choose the same meal at about the same time every day (or every other day). Families frequently use a bowel program where they have the child sit on the potty chair approximately 30 minutes after the evening meal to try to have a bowel movement at that time. Having a child blow bubbles or a similar activity results in a Valsalva maneuver, which tightens the abdominal musculature and is useful in having a bowel movement?

Sleep Disturbance
Sleep disturbances are also commonly reported in children with cerebral palsy. To deal with this problem, first we attempt to have the family eliminate any sources of irritation at bedtime, trying to make sure there is no source of pain such as ill-fitting night braces, problems with muscle spasms that interfere with sleep or severe constipation. Then aim to have a regular sleep routine, including a regular bedtime, having the room quiet and dark at night, having the room bright in the morning upon awakening and minimizing exciting stimuli shortly before bedtime. Sometimes melatonin supplements are used as a natural sleep aide.

Sexual Maturation
Sexual maturation in children with cerebral palsy has recently begun to be studied. One study of children with moderate to severe motor involvement [Gross Motor Function Classification System (GMFCS) levels III, IV and V] were studied. They found that girls began puberty sooner than boys with cerebral palsy, but girls with cerebral palsy actually completed puberty later than boys with cerebral palsy. Black children entered puberty earlier than the white children studied, but there was no difference in age completion of puberty. The average age for menarche (beginning of menstruation for girls) is 12.8 years for the general population and was found to be 14 years of age for girls with cerebral palsy. Girls with cerebral palsy had the age of onset of breast development similar to girls in the general population, but a higher percentage of girls with cerebral palsy had early onset or delayed onset of breast development than girls in the general population. Girls with cerebral palsy were found to have more advanced sexual maturation in association with higher body fat and the opposite was true with white boys with cerebral palsy showing more advanced sexual maturation with less body fat. Girls with cerebral palsy were found to begin puberty by 8.6 years of age and boys at 8.9 years of age on average. Girls with cerebral palsy, however, completed puberty later than boys with girls at 15.7 years and boys at 14.4 years of age. Further studies are needed for more specific information and also to find if this has any impact on any medical or social issues in children and adults with cerebral palsy.

Changes with Aging
Although cerebral palsy is motor disorder from a non-progressive lesion of a developing brain, this certainly changes over time in one’s body and is evident both during growth and during aging. When physical status is precarious, either in positioning, in gait or in propelling one’s wheelchair, these are areas that are at risk with the body’s changes with aging. We are not surprised when the general population of aging adults have more aches and pains or more problems with arthritic changes in joints, so that it should be expected that those with cerebral palsy who have been compensating for their physical problems throughout their life may have even more dramatic manifestation of these changes over time. It is felt that altered biomechanics throughout life lead to increased risk of arthritis and of painful joints. This can be due to overuse, for example, of shoulders or wrists that are doing weight bearing activities due to using crutches for walking.

Backs and legs, particularly hips, also are areas at risk due to the altered biomechanics throughout life. Increased fatigue due to increased physical demands for mobility is not infrequently seen. It has also been hypothesized that physiologic burnout may occur for adults with cerebral palsy due to the high physical demands placed on the body throughout life. This has been described for a gradual loss of function seen by some adults with cerebral palsy. It has been described that there is decreased strength, deterioration in mobility, coordination and deterioration in speech if there was dysarthria to begin with, along with physical exhaustion. Those who were the highest functioning may be most at risk for this. It is important to keep an eye out for all of these changes and to look for management of each symptom. Consideration should be given to the possibility of further compensations that may be made to avoid or minimize this, as well as to conserve energy and preserve function.

Those with severe problems with dystonia or spasticity may have further mechanical challenges caused by moving with these for many years. Osteoporosis can be seen even during childhood and, of course, more so in adulthood and in those who do not walk.

A classic biomechanical risk for those with athetoid cerebral palsy is cervical myelopathy due to the movement of the neck.

Continuing physical activity is very important for adults with cerebral palsy. In looking at adults with cerebral palsy who continued walking, many had significantly reduced the distances they were able to walk. The major reason they reported that they were not able to walk was because of increasing fatigue. The same cardiac risks and the same pulmonary risks that affect the general population affect adults with cerebral palsy. Those with cerebral palsy may be at higher risk due to more difficulty in exercise options for aerobic activity and strengthening. In the general population, activity levels decrease in girls in particular and those in the lower socioeconomic status. This is likely true in the entire population. Therefore, it is important to have a lifelong exercise program and recreational pursuits of a physical nature for individuals with cerebral palsy.

Land-based exercises like cycling as well as aquatic programs can be beneficial. These can improve cardiorespiratory conditioning and strength. Pool exercises are less beneficial for osteoporosis prevention due to the fact that one’s weight is approximately 1/10 of weight on land. Besides the cardiorespiratory conditioning, there are social benefits as well. There is literature that suggests a decreased problem with pain in those who are more physically active. It has been reported that chronic pain is a problem for over half of adults with cerebral palsy and increases with age, particularly in the legs and back. Frequently, activity has been reported as something to relieve pain. Certainly, it is also logical that it would help prevent pain by having improved flexibility and strength. Activity is also protective against fractures and osteoporosis.

The American Geriatric Society on Chronic Pain has suggested that all older adults with chronic pain participate in regular physical activity as treatment for pain. Resources such as recreational facilities, community organizations, hospital health fitness centers and universities may be available for long term exercise programs. Additionally, there are currently videos for wheelchair aerobics and other forms of workout.

It is important to keep up with new technology and equipment that may be needed as the effects of aging increase. Continuing contact with social workers and caseworkers for getting funding of needed equipment and services is critical. Similarly having a lifelong physical fitness program with intermittent updates by therapists is important.

Mortality
Most children with cerebral palsy survive to full adult life. There is a mortality rate of 1 percent per year in the first five years of life, which decreases to one-third of 1 percent over the following 20 years. The survival is worse for those with the most severe cerebral palsy and with lowest intelligence, which does go along with the most severe motor findings. The majority of deaths are due to respiratory problems so that hopefully better treatment of aspiration risk can minimize the early mortality. This again supports the emphasis on communication between all caregivers and the family.

Epilepsy and congenital malformations are also listed as causing death in approximately 5 percent to 8 percent of people with cerebral palsy. Those with mild cerebral palsy and normal cognition have normal lifespan expectancies.