PREVENTING MENTAL RETARDATION

Transcription

1 PREVENTING MENTAL RETARDATION A GUIDE TO THE CAUSES OF MENTAL RETARDATION AND STRATEGIES FOR PREVENTION The Arc of the United States 1010 Wayne Avenue, Suite 650 Silver Spring, Maryland

2 PREVENTING MENTAL RETARDATION A guide to the causes of mental retardation and strategies for prevention Contents Introduction...1 Genetic Considerations...2 Genetic Counseling...2 Prenatal Testing...2 Newborn Screening for Metabolic Disorders...4 Nutrition and Diet...6 Folic Acid and Neural Tube Defects...6 Maternal PKU...6 Alcohol, Smoking, Medications and Illegal Drugs...7 Alcohol...7 Smoking...7 Medications...7 Illegal Drugs...7 Women with Special Health Needs...8 Poverty Related Causes...8 Infectious Diseases...8 Rubella...8 Hepatitis B...8 Measles...9 Chicken Pox...9 Toxoplasmosis...9 Cytomegalovirus...9 Sexually Transmitted Diseases...9 Rh Blood Disease...11 Preventing Mental Retardation in Children...11 HIV/AIDS Testing...11 Immunizations...12 Injury Prevention...12 Other Causes...14 National Resources...16 The Arc s Prevention Position Statement

3 INTRODUCTION The Arc is a national organization working to improve the quality of life for children and adults with mental retardation and related developmental disabilities and their families. It also works with its more than 900 affiliated state and local chapters to prevent both the causes and the effects of mental retardation. Mental retardation refers to substantial limitations in a person s present functioning. It is characterized by an intellectual functioning level (IQ) below 70-75, existing concurrently with significant limitations in two or more of the following adaptive skill areas: communication, self-care, home living, social skills, community use, self-direction, health and safety, functional academics, leisure, and work. Mental retardation manifests before age 18. Approximately 15% of persons with mental retardation have impairments to the degree that they also meet the definition of developmental disability. People with developmental disabilities, according to the federal definition, are at least five years of age with a mental and/or physical impairment that occurred before they were 22. They have limits in at least three of seven major life activities: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency. This booklet is designed to educate personnel in the field of mental retardation about the causes of mental retardation and strategies to prevent the condition. There are many things a couple can do to reduce the chances of having a baby born with mental retardation. While there are many causes of mental retardation that cannot be prevented, there are several known preventable causes. The health of a baby can depend on how healthy the mother is before pregnancy. A personalized prenatal health care program should begin at least six months before pregnancy and should include: updating immunizations; reviewing use of medications; reviewing diet and vitamin supplementation, including folic acid; considering genetic counseling; stopping use of alcohol, cigarettes or other tobacco forms, illegal drugs, and legal drugs not approved by the doctor; obtaining a general health assessment; and avoiding infectious diseases. A woman should visit a doctor or clinic six months before becoming pregnant to discuss general health issues. Prenatal care should begin as soon as she suspects she is pregnant. During pregnancy, a woman can protect the developing fetus by: 2

4 getting plenty of rest and sleep; eating nutritious meals; avoiding alcohol, cigarettes and drugs; avoiding people who are sick; wearing seat belts in a car; and not lifting heavy objects. GENETIC CONSIDERATIONS Genetic conditions are those that involve the genes in the human body. The tens of thousands of genes carried on our chromosomes determine our body s functioning and physical and developmental characteristics. Genetic conditions causing mental retardation may be single gene disorders caused by a mutation or change in a single gene. These are generally inherited disorders, but sometimes occur as a spontaneous mutation of a gene. They may be chromosomal disorders involving multiple genes. A person may have too many or too few chromosomes, or there may be a change in the structure of a chromosome. Most chromosomal disorders happen sporadically. They are not necessarily inherited, even though they are considered genetic disorders. There are also multifactorial disorders that are combinations of multiple gene and environmental factors. They do not follow a normal inheritance pattern and no one knows exactly why they occur. Genetic Counseling Genetic counseling provides information about genetic conditions, the risk for occurrence, and available interventions. Many diseases and conditions in newborns are caused from defective genes or chromosomes inherited from the parents. Over 1000 genetic causes of birth defects have been identified; most include mental retardation. Included in these genetic causes are over 350 metabolic conditions. Consider genetic counseling if: the child may inherit a genetic or chromosomal disorder because of a specific condition in the family; a previous birth to either parent resulted in a child with a genetic disorder, unexplained mental retardation or a birth defect; the mother has had two or more miscarriages or a baby dies in infancy; the mother is 35 years of age or over; either partner is of a race or ethnic group with a high incidence of a genetic condition; and the partners are blood relatives. Prenatal Testing Prenatal testing can provide a couple with information to make choices about how their child will be born. They can decide where to have the child. If they know the child is likely to need intensive medical care after birth, they may choose to have their child at a major medical center with a high level neonatal intensive care unit. Families can prepare 3

5 for the birth of a child with special needs by reading current information and beginning to educate their family and friends. Parents who have other children at home may want to make arrangements in case the new baby needs to be hospitalized longer than normally expected. With good information and planning, parents can better celebrate the birth of their new baby. The Maternal Serum AFP (Alpha-Fetoprotein) screening test is used to detect spina bifida, anencephaly, Down syndrome and other disorders. It is specifically targeted to women under age 35. The testing, which measures the amount of alpha-fetoprotein from fetal urine, takes place at weeks of pregnancy. A sample of the mother s blood is taken and analyzed for certain chemicals that, together with her age, will determine the individual risk of having Down syndrome, spina bifida and other disorders. Those found to have an increased risk will be offered an amniocentesis. Results of the AFP test take only one week, and the test is safe for both the mother and fetus. About 5 of every 100 women who take the test have abnormal results. But only one or two of these women are likely to have a child with a disability. The screening test is not an accurate indicator in itself; it only suggests further testing. Multiple Marker Screening (sometimes referred to as Expanded AFP Screening, Triple Screen and/or Down Screen) measures alpha-fetoprotein (AFP) and human chorionic gonadotropin (UE3), Multiple Marker Screening enhances the effectiveness of screening for neural tube defects (NTD s), trisomy 21 or Down syndrome, and trisomy 18. Multiple Marker Screening is done by a blood test that is offered to women between the 15 th and 20 th week of pregnancy. Like AFP Screening, the results of Multiple Marker Screening are not a totally accurate indication of an abnormality. Irregular results suggest the need for further testing, such as having an amniocentesis. Chorionic Villus Sampling, or CVS, can be used as early as the seventh through ninth weeks of pregnancy. It identifies Down syndrome and other birth defects. In CVS, a tiny piece of the chorionic villus tissue is removed. This tissue grows from an enveloping membrane that eventually gives rise to the placenta. While not part of the fetus, the chorionic villus tissue is genetically identical to it. It will show any chromosomal abnormalities carried by the fetus. Amniocentesis is used to detect certain birth defects during the 16th week of pregnancy. Amniocentesis is a test performed on high risk women. It involves the withdrawal of a sample of fluid surrounding the fetus. The fluid is then tested for possible abnormalities. The test is usually given to women who have reached 35 years of age. Amniocentesis will detect Down syndrome, Tay-Sachs, sickle cell anemia, and many other genetic disorders. The test increases slightly the risk of miscarriage. Ultrasound is another prenatal technique. It uses high frequency sound waves to locate the position and measure the size and structure of the fetus and placenta in the womb. Ultrasound is also used during amniocentesis to help guide the needle insertion. This technique can rule out fetal abnormalities such as faulty structure of the heart. It has detected fetal heart problems, which have resulted in prenatal or perinatal treatment. 4

6 Fetoscopy is an experimental technique used to observe the fetus. A viewing instrument is inserted into the womb. It is also used to take blood samples. Fetoscopy shows promise in identifying certain blood diseases and malformations before birth. Newborn Screening for Metabolic Disorders Occasionally, babies are born without the ability to metabolize or properly handle certain chemicals in the body because they lack a specific chemical or enzyme. This is known as a metabolic disorder. All states now have laws that mandate that newborns are screened for some of these disorders. There are no national standards. Some states test for three diseases, while others screen for eight. This may change with time, as new technology is now available that can screen inexpensively for 20 to 30 disorders. Called tandom mass spectrometry, the technology uses an instrument (tandom mass spectrometer) that has the ability to measure multiple components in blood, plasma or urine with one test that is efficient and accurate. Phenylketonuria (PKU) is a hereditary disease occurring in 1/11,600 live births that leads to mental retardation and other developmental disabilities if untreated in infancy. In the case of PKU, the amino acid called phenylalanine accumulates. As it builds up in the bloodstream, it causes brain damage. Experts recommend that testing for PKU should be done when the infant is at least 24 hours of age but less than seven days old. Some experts recommend that infants receiving the test during the first 24 hours of life be re-tested at 2 to 3 weeks of age during their first postnatal pediatric visit. Individuals with PKU have symptoms that can be treated successfully through the use of a phenylalanine restricted diet. Experts feel people with PKU should remain on a restricted diet indefinitely in order to maintain a safe level of phenylalanine (believed to be in the range of 2-6 mg/dl). Congenital Hypothyroidism is caused by an inadequate supply of the thyroid hormone, thyroxine. If untreated, the child s growth will be stunted, and mental retardation will occur from lack of stimulation of the brain by the hormone thyroxine. All states now screen for this using the same filter paper used to screen for PKU. Initiating thyroid hormone replacement treatment as soon as possible after birth treats the condition. Galactosemia is caused by the lack of an enzyme necessary to digest dairy products. 1/50,000 infants are born with galactosemia and become critically ill soon after birth at the beginning of milk feeding. Some untreated infants die within days from liver failure. The survivors develop mental retardation, have liver damage, and may develop cataracts. A blood sample taken from newborn babies can identify those with galactosemia before the disease can develop. An inexpensive non-dairy infant formula can save the baby s life and allow for normal development. Maple Syrup Urine Disease is a hereditary disease found in 1/200,000 live births. It is characterized by an unusual maple syrup odor in the urine. Symptoms appear several 5

7 days after birth and also include poor feeding, lethargy and coma. If the infant survives longer than a few months, mental retardation is apparent. Maple syrup urine disease is caused by abnormal metabolism of three amino acids and is treated by a complicated infant formula that must begin immediately following early diagnosis. It can be diagnosed through the same blood sample used to screen for PKU and galactosemia. Prompt treatment and careful follow-up in maintaining the special diet have helped many children to have normal intelligence. Homocystinuria occurs when there is a deficiency of the enzyme cystathionine and is estimated to occur in 1/200,000 newborns. The brain needs this enzyme for normal development. Symptoms of the disorder include dislocated lenses of the eyes, mental retardation, skeletal abnormalities and abnormal blood clotting. It is treated with a special diet, which helps to prevent mental retardation and skeletal abnormalities. Dislocation of the ocular lenses occurs in many patients in spite of good dietary control. Biotinidase Deficiency is a disorder in which biotin, a member of the vitamin B complex, is deficient. Incidence is estimated at 1/70,000 live births. Symptoms include an abnormal red rash on the skin, poor muscle control, seizures, immune system impairment, hearing loss and mental retardation. Usually, symptoms are not noticeable at birth, but develop around three months of age. This disorder is diagnosed with a test of the infant s urine and treated with oral biotin supplements, which cause the symptoms to disappear. If untreated, it can result in coma or death. Hemoglobinopathies are disorders of the hemoglobin and are the most common genetic disorders in some specific populations. Hemoglobin is the substance that carries oxygen in the blood and gives blood its red color. About 1/400 African-American newborns are affected by Sickle cell disease. Sickle cell disease and a similar condition called thalessemia, are most commonly found in persons of African, Mediterranean, Asian, Caribbean, and South and Central American origins. While children who have Sickle cell disease are usually not considered to have a developmental disability, they do have an increased susceptibility to opportunistic diseases and bacterial infection, such as Streptococcus pneumoniae, that may cause mental retardation and other developmental disabilities. The risk of major infection is greatest in the first three years of life and can occur as early as four months of age. The chance of infection is greatly minimized when infants with Sickle cell disease are identified at birth through newborn screening and are treated with penicillin. NUTRITION AND DIET All women require good nutrition during pregnancy, especially adolescent girls whose own bodies are still growing. Nutritious meals consisting of items from the five major 6

8 food groups eaten each day help the fetus grow. These food groups include vegetables (3-5 servings); fruits (2-4 servings); breads, cereals, rice and pasta (6-11 servings); milk, yogurt and cheese (2-3 servings); and meat, poultry, fish, dry beans, eggs and nuts (2-3 servings). Since foods within each group vary somewhat in nutrient content, pregnant women should vary their choices within each group. The serving amounts should be at the higher end of the serving suggestions, because a woman should consume about 300 extra calories a day when pregnant. Water helps the body digest food and absorb essential nutrients. By eating a well-balanced diet, most women can get a good supply of vitamins and minerals needed for pregnancy. However, most doctors will prescribe a prenatal multivitamin supplement to ensure the pregnant woman receives sufficient iron, calcium, folic acid and other needed nutrients. Poor nutrition and unbalanced diets during pregnancy can cause low birth weight or premature births. Infants who survive these conditions are more likely to have mental retardation, cerebral palsy, epilepsy and respiratory disease. Folic Acid and Neural Tube Defects Neural Tube Defects (NTDs) are birth defects that occur in the brain or spinal cord. Spina bifida is the most common NTD. Babies born with the NTD, anencephaly (partial or complete absence of the brain), can be stillborn or die soon after birth. Women, who take the B vitamin, folic acid, before pregnancy and during the first two months of pregnancy can reduce the risk of serious birth defects of the brain and spinal cord. Eating foods that are high in folic acid is also helpful in preventing NTDs. These foods include peas, corn, dried beans, dark green leafy vegetables, white and whole wheat bread, beef liver and lean beef, bananas, fortified breakfast cereals and orange juice. The folic acid can be destroyed if these foods are overcooked. Some women are at higher risk of having low folic acid levels, including those women who have had several closely spaced pregnancies, have poor eating habits, are dieting severely, are anorexic or bulimic, use birth control, use alcohol, drugs, or cigarettes. A blood test given during pregnancy is able to detect NTDs. Those who take a daily multivitamin pill (most include folic acid) can guarantee that they are receiving the necessary amount of folic acid (0.4 mg of folate a day). Maternal PKU When women with PKU who are not receiving dietary therapy become pregnant, their high levels of phenylalanine can damage the developing fetus. Although the child does not have PKU, there will be brain damage from the toxic effects of phenylalanine in the womb. This is known as Maternal PKU. Women who have PKU should be on a phenylalanine restricted diet at least one year before pregnancy and should stay on the diet while breast-feeding to increase the chance of having a child without brain damage. ALCOHOL, SMOKING, MEDICATIONS AND ILLEGAL DRUGS 7

9 The placenta protects the developing fetus from many things that are harmful, but some teratogens cross the placenta resulting in birth defects. Teratogens are agents that damage the fetus. Alcohol Even small amounts of alcohol consumed during pregnancy may damage the fetus causing lifelong challenges. The most severe damage is Fetal Alcohol Syndrome (FAS). Babies with FAS have low birth weight that continues throughout childhood. They have central nervous system damage, which may include mental retardation and other learning problems. They have facial abnormalities and may have defects of the organs, joints and other body parts. Babies with Fetal Alcohol Effect (FAE) or Alcohol Related Neurodevelopmental Disabilities have birth defects in the same areas that may be less severe or obvious. Even if the child is not born with FAS or FAE, the use of alcohol during pregnancy is known to reduce intelligence. To avoid the chance of a baby having any alcohol-related birth defects, alcohol should be avoided totally during pregnancy. Smoking Smoking fills the lungs with nicotine and carbon monoxide. These poisons enter the blood stream and can restrict fetal growth inside the womb. Underdeveloped babies are subject to illnesses and often experience problems in learning and physical development. Prenatal exposure to nicotine is linked to learning disabilities. If a woman stops smoking while pregnant, previous smoking habits do not affect the baby. Medications Since certain medications are known to cause birth defects, a pregnant woman should advise her health care provider that she is pregnant before taking any type of medications. These include all over-the-counter medications such as aspirin, antacids, laxatives, diet pills, pep pills, sleeping pills, tranquilizers, cough medicines, nose drops and sprays. The doctor can provide advice about medications that are safe to take during pregnancy. There are hundreds of drugs and chemicals that are known to affect the male sperm or female ovum resulting in birth defects. Illegal Drugs Addictive drugs such as cocaine, heroin, amphetamines (speed) or barbiturates (downers) used during pregnancy place the baby s life at risk. Over 80 percent of infants of mothers addicted to narcotics are also born addicted. The drugs may cause brain damage, such as when a fetus experiences a stroke due to cocaine exposure. Bleeding, stillbirths and premature delivery are only a few of the additional complications that can result from the use of narcotics during pregnancy. Often a woman who is abusing drugs is not getting good prenatal care or eating a healthy diet. She may also be using alcohol. Women who are addicted to alcohol or drugs are not able to 8

10 nurture their children responsibly. These factors in combination lead to delayed development. WOMEN WITH SPECIAL HEALTH NEEDS Some women have special health needs or pre-existing conditions. Some of the disorders, and sometimes the medications that are taken to control the condition, may affect the fetus development. Special health needs include, but are not limited to, epilepsy and other seizure disorders, diabetes, obesity, high blood pressure, and anemia. Prior to becoming pregnant, women with special health needs should consult their physician. POVERTY-RELATED CAUSES Poverty can impact a child and family, increasing the chances of mental retardation. Women in poverty often receive inadequate prenatal care and general health care. They are more likely to have poor nutrition. They generally have less education, a factor linked to childbirth at an early age, less self esteem and a lesser ability to guide children in their learning and development. Children can be affected by environmental hazards such as lead poisoning, untreated childhood illness, poor nutrition, substandard housing or homelessness. INFECTIOUS DISEASES At least six months before conception, women should consult a doctor to be sure their rubella, hepatitis B, measles, and varicella vaccinations are current. Many infectious diseases, if contracted during pregnancy, can cause serious harm to the developing fetus. These include toxoplasmosis, sexually transmitted diseases and diseases for which immunizations are available. Rubella Rubella is an infectious viral disease commonly known as German measles. Its symptoms include slight fever, rash and swelling of the neck glands. Rubella, contracted during the first few months of pregnancy, can cause miscarriage, or birth defects such as cataracts, heart damage, deafness and/or mental retardation. A blood test before pregnancy is used to determine immunity to this disease. Hepatitis B Hepatitis B is an inflammation of the liver caused by the hepatitis B virus. Health care and some other occupations increase risk for hepatitis B infection. Women at risk should consult their doctor before pregnancy. Women who have the disease while pregnant may pass it on to their unborn child. Measles Measles during pregnancy is not known to harm the fetus, but is associated with spontaneous abortion, premature labor and delivery or difficulties with labor. Two doses 9

11 of measles vaccine or having had the measles provide immunity. An anitbodies test can determine immune status. The Centers for Disease Control and prevention recommends: any adult born after 1956 should get a second dose of measles vaccine; if vaccinated at younger than 12 months of age, the adult should receive two doses of the vaccine; Women should not receive the vaccine if they are pregnant and should avoid pregnancy for at least 30 days after immunization. Chicken Pox Chicken pox (Varicella) is caused by a virus, which spreads when germs pass from an infected person to the nose or throat of others. It usually causes a rash, itching, tiredness and fever. It can lead to pneumonia, brain infection or death. Complications occur most often in young children, adults or people with damaged immune systems. If a woman is pregnant and contracts chicken pox, her baby may be born with congenital varicella syndrome, including low birth weight, cataracts, microcephaly and other anomalies. Women who are considering pregnancy and have not had chicken pox should be vaccinated at least one month before planning to become pregnant. Toxoplasmosis Toxoplasmosis is transmitted through infected under-cooked meat. Cats, horses and birds are also known to carry this parasite. Pregnant women should avoid contact with the feces of these animals. If there is contact, she should wash her hands, thoroughly. Toxoplasmosis, contracted by a pregnant woman, can result in birth defects such as seizure disorders, brain damage, hydrocephalus, and eye disease. A blood test detects this condition. Cytomegalovirus Cytomegalovirus (CMV) is common among humans. Nearly everyone has been exposed to it by age 50 and 80 percent of the population in the United States carry CMV antibodies. CMV is the most common viral disease among newborns and the most common viral cause of mental retardation. Congenital infection occurs in.5 to 1.5 percent of births. Most of the newborns born with CMV have no symptoms. Those who do have symptoms typically have severe and multiple disabilities including mental retardation, motor disabilities, seizures, blindness and deafness. At present, there is no vaccine to prevent or inhibit CMV. It is recommended that pregnant women practice good hygiene if they come in contact with children who could be shedding the virus. Sexually Transmitted Diseases Sexually Transmitted Diseases (STDs) during pregnancy can cause brain damage and even death to the developing fetus. Syphilis is detected through a blood test. If it is contracted after the fourth month of pregnancy, it can have severe effects on the fetus. It is important to treat it during its initial stage. During the first stage, open lesions appear on the genitals. After a few weeks, they subside and a rash appears on the mucous membranes of 10

12 the mouth and genital area. Painful swelling and aching in the groin, neck and other areas of the body are common during this second phase. A pregnant woman who has syphilis runs the risk of having a late miscarriage or stillborn infant or of giving birth to an infant who also has syphilis. Syphilis in a baby can result in damage to the eyes, the brain, bones and joints, and other body tissues. Genital Herpes is another viral form of sexually transmitted diseases. If left unchecked it can cause miscarriage, premature labor and infant death. Genital herpes has increased dramatically. Symptoms include minor itching and/or a rash in the genital area, followed by a cluster of blister-like sores that form and break open. A baby delivered through an infected birth canal will be exposed to the virus. Infected babies may die within the first month of life. Those that survive may have mental retardation, cerebral palsy, or blindness. If there is a history of herpes, the doctor may recommend a cesarean delivery. Chlamydia is the most common sexually transmitted disease in the United States. About four million people, particularly teenagers and young adults, become infected annually. Chlamydia is a bacterium that is transmitted through unprotected vaginal and anal sex. It is known as the silent epidemic because three quarters of all women and half of all men with the disease have no symptoms. Possible symptoms include discharge from the penis or vagina and a burning sensation when urinating. Additional symptoms for women include lower abdominal pain or pain during intercourse and bleeding between menstrual periods. Men may experience burning and itching around the opening of the penis and/or pain and swelling in the testicles. Pelvic inflammatory disease (PID), which can be caused by chlamydia, is a leading cause of infertility when left untreated. Babies of women with untreated chlamydia have a 50 percent chance of developing conjunctivitis (an inflammation of the eyes that threatens eyesight), and a 20 percent likelihood of getting pneumonia. Chlamydia can also lead to premature birth or low birth weight, both of which are associated with mental retardation and other developmental disabilities. Acquired Immune Deficiency Syndrome (AIDS) is caused by the Human Immunodeficiency Virus (HIV). HIV antibody testing should be done before becoming pregnant. Not all babies born to HIV-infected women will be infected. The most common way infants and children get AIDS or HIV infection is from their mothers during pregnancy. HIV infection in the mother can be passed on to the fetus. Infants with HIV infection often have developmental delays, evidence of cognitive deficits, and other problems related to changes in muscle tone. These 11

13 children experience other symptoms of HIV infection such as chronic fever, diarrhea and poor growth. They are also prone to bacterial infections. Women who begin treatment with the medication AZT in the first trimester of pregnancy dramatically reduce the chance that their baby will be born with HIV. Women who are HIV positive are not advised to breastfeed since the virus can be transferred in that way. Rh Blood Disease Rh Blood Disease occurs when a woman who has Rh negative blood and a man who has Rh positive blood produce a child who inherits the Rh positive blood from the father. During birth, the baby s Rh positive blood cells enter the mother s bloodstream. The mother develops antibodies to fight the foreign cells. The antibodies usually do not affect the first baby, but will attack the red blood cells of the next fetus resulting in jaundice. Severe jaundice may result in mental retardation, hearing loss, cerebral palsy, or death. To prevent this disease, an injection of Rh Immunoglobulin (RhIG) must be given to a susceptible pregnant woman within 72 hours after each delivery, abortion or miscarriage. About one in eight women have Rh negative blood. Therefore, it is important that every pregnant woman know her blood type to determine the possibility of Rh blood disease. PREVENTING MENTAL RETARDATION IN CHILDREN The American Academy of Pediatrics recommends that babies have routine well-baby checkups at 1, 2, 4, 6, 9, 12 and 18 months and 2 years. Children should have a yearly physical examination between the ages of 2-6 years. HIV/AIDS Testing Pediatric AIDS can result in damage to the central nervous system. Any child born to an HIV positive mother should be tested at regular intervals of about every three months up to the age of months to determine the child s HIV status. If a child was treated with AZT before birth, close monitoring to detect side effects is recommended until age 21. Pediatric AIDS can occur in children with coagulation disorders, like hemophilia, when they are infected with HIV through blood products. In the case of children with hemophilia, testing for the presence of the HIV antibody should be performed regularly as determined by the doctor. Children with AIDS should not receive immunizations with live viruses, as these may precipitate the disease. Immunizations Immunizations prevent many diseases that, at one time, caused serious disorders and even death for many children. Prior to widespread immunization in the United States, 12

14 infectious diseases killed or disabled thousands of children each year. The near elimination of mental retardation due to measles encephalitis, congenital rubella syndrome, and Haemophilus influenzae type b meningitis, or Hib, can be contributed to vaccines. Most of these diseases have already been discussed in the section on infectious diseases. Brain damage may occur when a child catches pertussis (whooping cough), measles, mumps, Hib disease, or varicella (chicken pox). Rubella affects pregnant women who have a 90 percent chance of having a baby with serious birth defects and mental retardation if they get the disease early in pregnancy. The disease is usually mild in children. Encephalitis, an inflammation of the brain, is the cause of brain damage in pertussis, measles and mumps. Pertussis is also a cause of death in one of 200 infants who are more seriously affected than older children. Measles results in death in one of every 3,000 children who get it. Hib disease is not a disease itself, but is the name of a bacterial microorganism that causes several serious, often life-threatening, illnesses. One of these illnesses, bacterial meningitis, may cause mental retardation in young children. Bacterial meningitis is an inflammation of the membranes that protect the brain and the spinal cord. Hib can also cause pneumonia, an infectious arthritis called septic arthritis, inflammation of the trachea or windpipe, middle ear infection, skin inflammation, and a dangerous heart disease called pericarditis. Before the vaccine was introduced, one out of 20 children who got Hib meningitis died and percent of survivors had permanent brain damage Even varicella (chicken pox) may have complications that include bacterial infection of the skin, swelling of the brain, and pneumonia. Before the vaccine became available, there were 11,000 hospitalizations for chicken pox in the United States, with up to 100 deaths Injury Prevention Injuries continue to be the leading cause of death among American children. Fortunately, most injuries are not serious. Cuts, bruises, burns and bumps are normal hazards of growing. A high percentage of injuries occur when children are tired, hungry or playing in unsupervised or unsafe play areas. There is more risk of an injury when there is illness in the family, pregnancy, emotional tension or any other change in the family situation. Most injuries can be prevented. Teach safety at an early age. Do not underestimate a child s ability to understand and learn. Screen unfamiliar environments for safety hazards. Learn to listen for sounds out of the ordinary. Investigate the lack of familiar sounds from your children at play. 13

15 Make a systematic check of the home, room by room, and eliminate hazards or reduce them as much as possible. Never leave a young child alone in the house, even for just a few minutes. Be aware of the child s increasing abilities as he or she develops. Safety seats and seat belts can prevent accidental brain injuries. Many states have laws requiring that all children under the age of four or less than 40 pounds ride in federally approved safety seats in automobiles. Young children should not sit in a person s lap, stand up in a seat, ride in the back of a pick-up truck, or remain unsecured while riding in a car. Holding a baby is the most dangerous method of transporting. Even in a lowspeed crash, an adult cannot hold onto a child. If the adult is not using safety belts, the baby could be crushed between their body and the dashboard. Infants should ride in a backward-facing, semi-reclined car safety seat. It must be secured to the car s seat by the lap belt. Household baby carriers and car beds do not give adequate protection. Helmets save lives and can prevent 88% of brain injuries. A child need fall from a height of only two feet and hit his head to have traumatic brain injury. A blow to the head against a hard surface can kill a cyclist riding at only 20 miles per hour (an average speed for young cyclists). Brain injuries can occur while riding plastic toys, bicycles, skateboards, or using roller skates and blades, off road vehicles, motorcycles, and while playing sports. Helmets should be worn during all of these activities. To be effective the helmet should fit down onto the head. The straps should be adjusted and fastened so the helmet is no more than one inch above the eyebrows. Helmets are designed to endure one crash. If the foam core is compressed or cracked, the helmet should be replaced. Shaken Baby Syndrome is a form of child abuse that can occur when a baby is shaken/slammed so violently that any competent individuals observing the shaking would recognize it was dangerous. It can result in brain damage leading to mental retardation, speech and learning disabilities, paralysis, seizures, hearing loss and even death. Infants and toddlers are more susceptible to shaking than older children for three reasons: their brain tissue is delicate and more susceptible to damage; their head is disproportionately large; and, their neck muscles are weak. An estimated 3,000 cases of shaken baby syndrome occur each year in the U.S. One shaken baby in four dies as a result of the abuse. The victims range in age from a few days to five years, with an average age of six to eight months. To prevent Shaken Baby Syndrome and other forms of child abuse, a parent should have a plan for times when they are at risk of losing control. This plan should include a way to keep the baby safe, yet provide a way for the parent to regain their composure. A baby can be placed in a crib or other safe place while the parent steps outside or runs the vacuum cleaner to escape the noise. 14

16 Falls increase as babies grow and become more inquisitive and mobile. To protect children from a fall: Keep one hand on the baby while on a dressing table or elevated surface. Use infant seats only in playpens or on the floor. Put safety locks on doors leading to porches, balconies, or decks. Decorate glass doors with decals to make sure the glass will be noticed. Keep top and bottom of stairs blocked off with gates until children are old enough to use the stairs safely. Use adjustable window guards. Do not place furniture or other things that can be climbed under windows. Near drowning affects an estimated 3,000 children each year. Many children have brain damage as a result of a submersion incident. To protect a child from drowning and submersion, caregivers should: Provide constant and complete supervision even when the child has learned to swim. Use pool or spa covers that lock and are child-proof, or use total fencing around pool or spa with gates that are self-closing and self-latching. Keep infants away from toilets or buckets of water. Infants are top-heavy and may fall headfirst into a container of water and drown. Supervise children while they are in the bathtub. Other Causes Dehydration can occur in young children as a result of illness, inadequate liquid intake or excessive heat. Strokes resulting from dehydration can result in permanent brain damage. Reye s Syndrome (pronounced rye ) is a disease believed to be caused by the ingestion of medicines containing salicylate (aspirin). It primarily affects children and teenagers and appears soon after flu-like infection or chicken pox. Its incidence is approximately one per one million individuals and occurs most frequently during the months of January, February and March when influenza is most common. Reye s syndrome rapidly progresses from a fever to brain-damaging delirium in a few hours. Symptoms occur in two stages: Stage 1: continuous vomiting, nausea, loss of energy, signs of brain disorder, such as drowsiness, listlessness and staring. Stage 2: Irritability, aggressive behavior, delirium, disorientation, slurred speech, convulsions, may not recognize parents, possible comatose. Children who survive are often left with neurological abnormalities and mental retardation. There is no cure for this disease, but its incidence can be reduced if children avoid aspirin or any medications containing aspirin. Many over the counter medications contain salicylates, including Pepto Bismol, Excedrin, Anacin, Bufferin, Coricidin, Triaminicin, Alka-Seltzer, Aspergum and Dristan tablets. In place of aspirin, doctors recommend using medication containing acetaminophen, which is found in non-aspirin drugs such as 15

17 Tylenol and Tempra. Since mid-1986, warning labels about Reye s Syndrome have been required on all over-the-counter aspirin products. Lead Poisoning is caused when children consume items containing lead or are exposed to it in their environment. It is especially harmful to children younger than six. Anyone who eats, drinks or breathes something which has too much lead can get lead poisoning. In its initial stages, lead poisoning may produce virtually no symptoms. In later years, children who have been exposed may have brain damage, mental retardation, learning disabilities, behavior problems, anemia, liver and kidney damage, hearing loss, hyperactivity, developmental delays, and other physical and mental problems, and in extreme cases, death. Papers printed with colored inks, such as comic books or newspapers, peeling lead-based paints, and dirt that has been exposed to automobile exhaust all contain toxic amounts of lead. Lead may be in your water; either from the source or from lead solders on pipes. It can be found as dust in the air resulting from scraping leaded paint or opening and closing windows with lead paint in older houses. The symptoms of lead poisoning are constipation, loss of appetite, vomiting, irritability, listlessness, and cramps. It can be misdiagnosed unless the doctor strongly suspects lead poisoning. A blood test is the only way to determine if a child has too much lead. Every child should be tested at 12 months of age, and if resources allow, at 24 months. Screening should start at 6 months if the child is at risk of lead exposure, particularly if the child lives in a home built before 1978 that has peeling paint. Some states require frequent lead screening of children. To decrease exposure to lead poisoning, teach children not to put paint chips or colored papers in their mouths. Teach them to wash their hands frequently and well. Consider lead paint abatement strategies to remove or contain the paint from homes built before Traditional means of paint removal will release lead dust particles. These dust particles remain in the house or in soil, including sandboxes, for as long as ten years. Also, let water run until it feels hot or cold; this will remove standing water, which contains lead from solder on pipes. Poisoning can cause brain damage. Most homes contain multiple potential poisons that are common household materials. These common household substances are potentially dangerous: Alcohol Ammonia Bleaches Detergent Floor and furniture waxes and polishes Gasoline Kerosene Lighter fluid Medicines (including aspirin, acetaminophen and laxatives) 16

18 Lye Oven cleaners Paint thinners and removers Pesticides Toilet bowl cleaners Turpentine Weed killers To prevent poisoning, keep potentially dangerous household materials in child proof, safety locked cabinets. Read labels carefully before giving any medicine. Medication kept in a purse is a frequent source of poisoning. Do not put poisonous products into food containers such as a baby food jar. Do not coax a child into taking medicine by telling him it tastes like candy. Throw away unlabeled and outdated medicine. Keep a bottle of Ipecac Syrup on hand for inducing vomiting. It is available without a prescription. To handle a poisoning, call 911 or local emergency assistance. Use the Syrup of Ipecac to induce vomiting after getting the advice of a doctor, emergency medical professional or poison control center. If the child has swallowed certain caustic substances or petroleum products, vomiting should not be induced. Give half a glass of water or milk to any person who has swallowed a poison, but only if the person is conscious and not having convulsions. Loosen clothing at the child s neck and waist. Keep the child quiet and warm until emergency medical aid arrives. If the child is taken to the emergency room, take the container(s) of suspected poison, also. RESOURCES ON THE INTERNET The Arc s Q&As on Causes and Prevention of Mental Retardation - WIC (Women, Infants and Children)- CDC National Immunization Program Lead Poisoning (National Lead Information Center) - Reye s Syndrome Other related resources - The national organization of and for people with mental retardation and relat developmental disabilities and their families 17

19 PREVENTION Position Statement #15 ISSUE Mental retardation has an impact on all areas of life such as social, educational, health and economics. While knowledge of both the causes and ways to prevent mental retardation has grown enormously, comprehensive programs for prevention are not consistently implemented or used. Comprehensive programs must include biomedical advances, public education, socio-economic interventions, preventive health care and elimination of environmental hazards. POSITION The Arc is committed to reducing the incidence and limiting the consequences of mental retardation through education, research, advocacy and by supporting people with mental retardation, their families, friends and the community. The Arc believes that every person has the right to grow and develop in nurturing environments that are free from abuse and neglect, free from disease, safe from injury and free from the effects of poverty. Prevention efforts must include: prenatal, perinatal and postnatal care, including frequent physical/developmental checks and adequate nutrition as well as available and accessible support services, including genetic counseling, to high-risk populations; education on the risks of exposing the fetus to X-rays, smoking, alcohol and drugs, prescription and non-prescription medications, and sexually transmitted diseases; immunization against contagious diseases prior to pregnancy; mandatory newborn screening programs done within a timeframe that guarantees accurate results and treatment for metabolic disorders such as phenylketonuria, galactosemia and hypothyroidism; mandatory immunization of children for all preventable, contagious diseases; education emphasizing the risks of the use of aspirin with children; education, policies and programs to prevent childhood injuries resulting in mental retardation, including mandatory use of seat belts, safety seats and helmets; removal of environmental contaminants which are known contributors to mental retardation; and enforcement of existing public policy designed to prevent mental retardation. Adopted by Delegate Body, Nov Replaces Position adopted Nov One of a series of position statements reflecting The Arc's vision on issues affecting people with mental retardation and related developmental disabilities and their families. The Arc of the United States, 1010 Wayne Ave., Suite 650, Silver Spring, MD