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MEDICAL CONDITIONS TABLE OF CONTENTS ADHD ASTHMA CANCER CARDIAC DISEASE IN CHILDREN CELIAC DISEASE CEREBRAL PALSY (CP) CYSTIC FIBROSIS (CF) DEPRESSION DIABETES DOWN SYNDROME--TRISOMY 21 HEMOPHILIA HIV/AIDS HYDROCEPHALUS JUVENILE RHEUMATOID ARTHRITIS (JRA) MARFAN SYNDROME MUSCULAR DYSTROPHY (MD) OSTEOGENESIS IMPERFECTA (OI) PRADER-WILLIS SYNDROME RENAL DISEASE REYE’S SYNDROME SCOLIOSIS SEIZURE DISORDERS--EPILEPSY SEVERE ALLERGIC REACTION SHORT BOWEL SYNDROME (SBS) SICKLE CELL ANEMIA SPINA BIFIDA (SB) TOURETTE SYNDROME (TS) TRAUMATIC HEAD INJURY 1 ADHD WHAT IS IT? Attention Deficit Disorder (ADD)/Attention Deficit Hyperactivity Disorder (ADHD) are the name of a group of behaviors found in many children and adults. Children with ADHD have trouble paying attention at school and may be much more active and/or impulsive than usual for their age. This contributes to significant problems in relationships and learning and for this reason children with ADHD are sometimes seem as having behavior problems. WHO GETS IT? ADHD is common, affecting 3-10% of school age children, but it is diagnosed 2 to 9 times more often in boys than in girls. It is considered that girls are under-diagnosed because fewer tend to exhibit the hyperactive behaviors common among boys. ADHD Symptoms can include: Difficulty following instructions Difficulty keeping on task Often loses things needed for school Appears not to listen Seems disorganized Forget things Easily distracted Runs/climbs inappropriately Blurts out answers in class Interrupts people Difficulty staying seated or sitting still Talks too much Is always “on the go” Has trouble waiting turn CAUSES Children with ADHD do not make enough chemicals in key areas in the brain that are responsible for organizing thought. Without enough of these chemicals, the organizing centers of the brain do not work well leading to the above symptoms. ADHD is more common in children who have close relatives with the disorder. TREATMENT No single treatment is completely effective; however, psycho-stimulant medications, with behavioral and cognitive therapies have the greatest controlling influence. PROGNOSIS Children with behavior disorders can be difficult to manage, but can become active, functioning members of society. 2 ADHD (continued) EDUCATIONAL IMPLICATIONS Many students experience the greatest difficulty in school where demands for attention and impulse or motor control are virtual requirements for success. Their poor performance and academic failure usually result from uncompleted tasks, assignments completed but not handed in on time, disorganization, and not following directions. These students do best with a teacher who is knowledgeable about the disorder and willing to problem-solve to help the student overcome his/her difficulties. A few guidelines are: The classroom environment structured and predictable with rules, schedules, and assignments posted and clearly spelled out Set target behaviors Seat the child close to the teacher, away from distracters Behavior management SEE HEALTH CARE PLAN – Behavior Disorder 3 ASTHMA WHAT IS IT? Asthma is a chronic inflammatory disease of the airways. This inflammation causes the airways to narrow periodically and this in turn produces wheezing and breathlessness, chest tightness and cough sometimes to the point where the patient gasps for air. Obstruction to air flow either stops spontaneously or responds to a wide range of treatments, but continuing inflammation makes the airways hyper-responsive to stimuli such as cold air, exercise, and dust mites, pollutants in the air, and even stress and anxiety. In an asthma episode, the muscle tissue in the walls of the bronchi goes into spasm, and the cells lining the airways swell and secrete mucus into the air spaces. Both of these actions cause the bronchi to become narrowed (bronchoconstriction). As a result, the individual with asthma has to make a much greater effort to breathe in air and to expel it. CAUSES Asthma usually begins in childhood or adolescence, but it also may first appear during adult years. When it begins in childhood it often does so in a child who is likely, for genetic reasons, to become sensitized to common “allergens” in the environment. When these children are exposed to house-dust mites, animal proteins, fungi, or other potential allergens they produce a type of antibody that is intended to engulf and destroy the foreign materials. This has the effect of making the airway cells sensitive to particular materials. Further exposure can lead rapidly to an asthmatic response. SYMPTOMS Coughing, wheezing (a high-pitched whistling sound when breathing out,) shortness of breath, chest tightness, pain or pressure. Not every person with asthma has the same symptoms. Symptoms may also vary from one asthma episode to another. CLASSIFICATIONS There are four classifications of asthma severity, as defined without the use of preventative medication: Mild Intermittent- children who have symptoms no more than twice a week with no symptoms and normal airflow between exacerbations. Nighttime symptoms are no more than twice a month. Exacerbations are brief and very in intensity. Mild Persistent- children who have symptoms more than twice a week but less than daily. Exacerbations may affect their activity tolerance. Nighttime symptoms are more than twice a month, but less than two times a week. Moderate Persistent- children who have daily symptoms requiring daily use of an inhaled bronchodilator. They have exacerbations at least two times a week, which may last days and may affect activity tolerance. Nighttime symptoms are more than once a week. Severe Persistent- children with continual symptoms, limited activity tolerance, frequent exacerbations and frequent nighttime symptoms. 4 ASTHMA (continued) TREATMENT There is no cure for asthma. Treatment requires four components: Patient education, environmental control, comprehensive pharmacological (medication) therapy and objective measures to assess severity and monitor the course of therapy. Addressing all four components will promote student wellness and enable functioning at a normal level of activity. The school nurse and/or parent/guardian should list the type of prescribed medication and means of administration, as well as emergency management, in the student’s individualized health care plan. PHYSICAL ACTIVITY Participation in physical activity and school sports helps all students, including students with asthma. Physical activity can help reduce susceptibility to asthma exacerbations. In general, there are no activities that students with asthma should avoid. Physical activity guidelines include: Avoid dehydration Keep medications available, as ordered by the physician Warm up before intensive activities Encourage rest, cool down, and drinking fluids if the student develops cough, wheezing, or shortness of breath. If breathing does not improve with 5-10 minutes of rest, use the inhaler for the first time if not used before exercise. If the prescribed dose does not resolve respiratory distress, see student’s health care plan for continued emergency follow-up directions. Wear an asthma identification tag or ID bracelet. SCHOOL ENVIRONMENT: CREATING AN ASTHMA-FRIENDLY ENVIRONMENT Substances in the environment can act as triggers for a student’s asthma. It is important that school staff be aware of these substances and work to minimize them in the school. Keep air handlers clean and inspected. Ensure that unnecessary odors, allergens, irritants, or pollutants are not added to the school air by avoiding air fresheners, furred or feathered animals, indoor plants in classrooms, and outdoor plants known to be allergens. Minimize the use of portables for classrooms. Student may be permitted to carry and self administer a metered dose inhaler with required signed authorization form. (PCS Form: 2-3060) EDUCATIONAL IMPLICATIONS 1. Facilitate the student’s participation in extra-curricular activities including sports and field trips. 2. Absences for necessary medical visits without penalty and arrange for the opportunity to make up missed schoolwork. 3. Provide assistance with responding to respiratory distress whenever and wherever it is necessary to meet the medical plan of care. SEE: HEALTH CARE PLAN - Asthma 5 CANCER WHAT IS IT? Cancer is a group of cells (usually derived from a single cell) that has lost its normal control mechanisms and thus has unregulated growth. Many different kinds of cancer are known. CAUSE The cause is still undetermined. It has been determined that cancer in children differs markedly from cancer in adults. Childhood cancer tends to occur in tissues that are reproducing at a rapid rate, such as blood, lymphoid, bone, and nerves. TREATMENT Cancer treatments seek to destroy malignant cells while sparing normal ones, to reduce pain, and to induce cure or remission. They include: chemotherapy, radiation, immunotherapy, bone marrow transplantation and surgery. A single primary treatment or a combination of treatments may be used. PROGNOSIS Differs with individual types of cancer, early diagnosis, and treatment. The earlier cancer is detected, the more effective treatment can be and the closer the possibility of a cure. EDUCATIONAL IMPLICATIONS Modern therapy is designed to allow children with cancer to pursue their normal day-today activities, as much as possible. Hopefully, the student is able to attend school regularly. Some treatments may involve school time, cause illnesses, and require the student to rest at home or in the hospital. Like all children, children with cancer need love, support and understanding. The same limits on behavior apply to them as to the rest of the class. Activity restrictions. When restrictions are necessary, efforts should be made to channel energies into other fulfilling activities. Signs and symptoms of health problems and emergency procedures. Students are especially vulnerable to infections (due to chemotherapy.) Notify parents when the student may be at risk for exposure to a communicable disease at school. Self concepts and social isolation may require a referral to the guidance counselor or social worker. SEE: HEALTH CARE PLAN - Cancer 6 CARDIAC DISEASE IN CHILDREN WHAT IS IT? Cardiovascular disorders in children are divided into two major groups, congenital heart disease and acquired heart disorders. Congenital heart disease includes primarily anatomic abnormalities present at birth that result in abnormal cardiac function. Acquired cardiac disorders refer to disease processes or abnormalities that occur after birth and can be seen in the normal heart or in the presence of congenital heart defects. CAUSE Cardiovascular disorders result from various factors, including infection, autoimmune responses, environmental factors and familial tendencies. TREATMENT Depending on the type of heart disease, treatment can include medication, surgery, pacemakers, and even heart transplants. PROGNOSIS Early recognition, diagnosis and treatment improve the prognosis. As advances in treatment of pediatric cardiac care continue to improve, so does the overall prognosis for a cure. EDUCATIONAL IMPLICATIONS Medication needs Nutritional needs (diet and fluids) Fatigue and need for rest periods Bathroom privileges, as needed Increased school absences due to illness and hospitalization Activity restrictions. Request specific information from the student’s parent/guardian and physician. Possible OT, PT referrals. Signs and symptoms of cardiac problems Emergency procedures. SEE: HEALTH CARE PLAN - Cardiac disease 7 CELIAC DISEASE WHAT IS IT? Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate gluten, a protein in wheat, rye, and barley. Gluten is found mainly in foods but may also be found in everyday products such as medicines, vitamins, and lip balms. CAUSE Celiac disease is genetic, meaning it runs in families. Sometimes the disease is triggered after surgery, pregnancy, childbirth, viral infection, or severe emotional stress. SYMPTOMS Symptoms of celiac disease vary from person to person. Digestive symptoms are more common in infants and young children and may include: Abdominal pain and bloating Chronic diarrhea Vomiting Constipation Pale, foul-smelling or fatty stool Weight loss Adults are less likely to have digestive symptoms and may instead have one or more of the following: Fatigue Bone or joint pain Depression Tingling numbness in the hands and feet TREATMENT The treatment for celiac disease is a gluten-free diet. EDUCATIONAL IMPLICATIONS Dietary restrictions Allow unrestricted access to restroom SEE: Health Care Plan: Celiac Disease 8 CEREBAL PALSY (CP) WHAT IS IT? Cerebral Palsy is a broad term used to describe a group of disorders that affect a person’s ability to move and maintain balance and posture. It is due to a nonprogressive brain abnormality, which means that is it does not get worse over time, though the exact symptoms can change over a person’s lifetime. It is characterized by impaired voluntary muscle movement. People with cerebral palsy have damage to the part of the brain that controls muscle tone. Muscle tone is the amount of resistance to movement in a muscle, which keeps the body in a certain posture or position. There are four main types of cerebral palsy: spastic, athetoid, ataxic and mixed. Spastic – stiff and difficult movement Athetoid – involuntary and uncontrolled movement Ataxic –disturbed sense of balance and depth perception Mixed - a combination of these types for any one individual CAUSES Perinatal developmental abnormalities, mother’s illness during pregnancy, premature delivery or lack of oxygen supply to the baby can cause cerebral palsy. In early life, it can be the result of an accident, lead poisoning, viral infection, or child abuse. TREATMENT Cerebral Palsy is a lifelong condition. The treatment goal is to develop maximal independence within the limits of their motor and associated handicaps. Balance and coordination are not normal and are difficult to develop, modulate, and control. Developmental tasks are very difficult and tiring. The brain injury causing cerebral palsy may cause seizures to occur. Medication is helpful to treat seizures. PROGNOSIS The goal is to promote the achievement of independent living. Such preparation results in adults who are independent and self-supporting. EDUCATIONAL IMPLICATIONS Early identification can lessen developmental problems and lead to appropriate intervention. Complicated needs require a team approach to enhance development in all areas. Educators, physical and occupational therapists, social workers, speech-language pathologists, psychologists, and physicians can assist families by providing information and education. Involvement in school activities and adapted physical education will make the student’s school experience as normal as possible. Medication needs Continuing therapy Regular or special education Counseling Community integration opportunities Recreation Advanced technology (Computers and engineering devices). SEE: HEALTH CARE PLAN - Cerebral Palsy 9 CYSTIC FIBROSIS (CF) WHAT IS IT? Cystic Fibrosis is an inherited disease that causes mucus in the body to become thick and sticky. This glue-like mucus builds up and causes problems in the lungs and the pancreas. People who have cystic fibrosis can have serious breathing problems and lung disease. They can also have problems with nutrition, digestion, growth, and development. There is no cure for cystic fibrosis. But with advances in treatment, people with cystic fibrosis are living longer. CAUSE The disease is an inherited disease that is transmitted as an autosomal recessive trait. There is no treatment to prevent this condition. TREATMENT Because cystic fibrosis has no cure, the aim of treatment is to help the student lead as normal a life as possible. The emphasis of treatment depends on the organ systems involved. To combat electrolyte losses in sweat, treatment includes generous salting of foods and, during hot weather, salt supplements. Chest percussion and postural drainage helps keep the lungs clear. To offset pancreatic enzyme deficiencies, treatment includes oral pancreatic enzymes with calories and snacks. The student’s diet should be a normal-to-high in fat to increase density of the diet and supplemented with vitamins A, D, E, and K. Hospitalization can be necessary once or twice a year for maintenance or to prevent serious infections. PROGNOSIS Life expectancy for children with cystic fibrosis is now 37 years old or longer. Long term survival is somewhat better in males and in people whose initial symptoms were restricted to the digestive tract, or those who do not develop pancreatic problems. Many children live to be productive adults who will require lifelong treatment. EDUCATIONAL IMPLICATIONS Requires medications with meals and snacks Dietary needs should be stressed and adhered to The student may sweat profusely and lose large amounts of salt Encourage intake of fluids during activities Bathroom privileges as needed to an increased number of stools Student may tire but encourage participation in physical exercise as fully as possible. May have lengthy and frequent school absences if the disease is severe. Student may carry and self administer pancreatic enzyme supplement with required signed authorization form. (obtained from Health Services Department) SEE: HEALTH CARE PLAN Cystic Fibrosis 10 DEPRESSION WHAT IS IT? A disturbance of mood involving depression or loss of interest or pleasure in unusual activities and pastimes. There is evidence of interference in social and occupational functioning for at least 2 weeks. The child tends to spend more time in solitary activities, especially television viewing, and school work is impaired. Some children become more dependent and clinging; others become more aggressive and disruptive. CAUSE Some states of depression are of a temporary nature (e.g., acute depression precipitated by a traumatic event). This might include a period of hospitalization, loss of a parent through death or separation, or loss of a significant relationship with something (a pet), someone (friend or family member), or a place (move from a familiar home, neighborhood or city). However, the multiple causes of depression are controversial and not completely understood. Current research suggests possible genetic, familial, biochemical, physiological, and social causes. In many, the history identifies a specific personal loss or severe stress that probably interacts with a person’s predisposition to major depression. TREATMENT The management of depression is usually psychotherapeutic and highly individualized. Antidepressant medications may be administered as an adjunct to psychotherapy. These drugs are primarily used to elevate mood and alleviate other symptoms associated with moderate to severe depression. They do not treat the underlying causes of the depression but improve daily functioning. PROGNOSIS Depression is difficult to treat, especially in children, but treatment has become more effective. EDUCATIONAL IMPLICATION Staff should be aware of signs and symptoms of depression: Students may have lowered grades in school due to lack of interest in doing homework or achieving in school. Their affect is one of sadness, dejection, helplessness and hopelessness. The outlook is gloomy and pessimistic and a feeling of worthlessness prevails. Thoughts are slowed, and concentration is difficult. In severe depression, psychotic features, such as hallucinations and delusions, may be evident. Physically, there is evidence of weakness and fatigue. Some individuals may be inclined toward excessive eating and drinking, while others may experience anorexia and weight loss. Sleep disturbances are common. SEE HEALTH CARE PLAN – Behavior Disorder 11 DIABETES WHAT IS IT? Diabetes, the most common disorder of the endocrine (hormone) system, occurs when blood sugar levels in the body consistently stay above normal. It affects more than 23 million people in the U.S. alone. Diabetes is a disease brought on by either the body’s inability to make insulin (type 1 diabetes) or by the body not responding to the effects of insulin (type 2 diabetes). Insulin is one of the main hormones that regulates blood sugar levels and allows the body to use sugar (called glucose) for energy. SYMPTOMS The symptoms of type 1 diabetes often occur suddenly and can be severe. They include: Increased thirst Increased hunger (especially after eating) Dry mouth Frequent urination Unexplained weight loss (even though you are eating and feel hungry) Fatigue Blurred vision Labored, heavy breathing Loss of consciousness (rare) The symptoms of type 2 diabetes may be the same as those listed above. Most often, there are no symptoms or a very gradual development of the above symptoms. Other symptoms may include: Slow-healing sores or cuts Itching of the skin (usually in the vaginal or groin area) Yeast infections Recent weight gain Numbness or tingling of the hands and feet TREATMENT The goal of diabetes management is to keep the blood sugar levels as close to normal as possible. The primary treatment for type 1 diabetes is insulin. The other components of type 1 care include glucose monitoring, meal planning and physical activity. The first treatment for type 2 diabetes is often meal planning for blood sugar control, weight loss and exercising. If these treatments are not enough to bring blood glucose levels down to normal, the next step is taking a medicine that lowers blood glucose levels. PROGNOSIS People with diabetes can live a long healthy life if the diabetes is kept under control. Management of diabetes is life-long. Uncontrolled diabetes can lead to long-term complications such as blindness, kidney disease, amputations and heart disease. SEE HEALTH CARE PLAN - Diabetes 12 DOWN SYNDROME TRISOMY 21 WHAT IS IT? Down syndrome is the most common and readily identifiable chromosomal condition associated with mentally handicapping conditions. These people have an extra copy of Chromosome 21 which changes the normal development of the body and brain. Individuals with Down syndrome are usually smaller than peers, have low to moderate IQs, slower motor skill development, a lower resistance to infections, visual problems, mild to moderate hearing loss, speech difficulty, and heart defects. CAUSE This genetic imbalance is commonly due to a fault in chromosome distribution which occurs in the development of the egg of the sperm or in the first division of the fertilized egg. This extra chromosome changes the orderly development of the body and brain. In most cases, the diagnosis of Down syndrome is made according to results from a chromosome test administered shortly after birth. TREATMENT Children with Down Syndrome are more susceptible to infections; therefore, prompt treatment for even minor illness is advocated. An exercise program combined with a low caloric diet may help control weight and strengthen muscle tone. Atlantoaxial instability (cervical vertebrae mobility) should be evaluated before participating in activities which place stress on the neck. Many of the health related problems can be corrected with therapy, medication, and surgery. PROGNOSIS There is no cure for this birth defect. Life expectancy can be 50 years or more. EDUCATIONAL IMPLICATIONS Children should be enrolled in an infant development/early intervention program. These programs offer special instruction in language, cognitive, self-help, social skills, and gross and fine motor development. There is a wide variation in mental abilities, behavior, and developmental progress. Due to these differences, it is impossible to predict future achievements. It is important for all members of the education team to place few limitations on potential capabilities. Staff should be aware of any heart defect and an increased incidence of visual problems. SEE: HEALTH CARE PLAN - Down Syndrome 13 HEMOPHILIA WHAT IS IT? Hemophilia is an inherited bleeding disorder that affects primarily males in the United States. The disorder results form deficiencies in blood clotting factors and can lead to spontaneous internal bleeding and bleeding following injuries or surgery. These bleeding episodes can cause severe joint damage, neurological damage, damage to other organ systems involved in the hemorrhage, and in rare cases, death. Treating the bleeding episodes involves the prompt and proper use of clotting factor concentrates. CAUSE Hemophilia A and B are inherited as X-link recessive traits. This means that female carriers have a 50% chance of transmitting the gene to each son or daughter. Daughters who receive the gene will be carriers; sons who receive it are born with hemophilia. TREATMENT Hemophilia is a lifelong condition with no cure, but it can be successfully managed with clotting factor replacement therapy. Factor replacement may be administered via intravenous (IV) therapy. Once the clotting factor is infused, it begins to work quickly and helps to prevent joint damage PREVENTING PROBLEMS Problems can be prevented by encouraging healthy behaviors. For example, exercise can strengthen the muscles and decrease bleeding from injuries. Swimming is strongly encouraged because it exercises all the muscle groups without putting stress on the joints The person’s weight should also be managed properly, because excess weight can cause strain in regions of the body. Medications, such as clotting factors being administered on a regular basis can prevent “bleeds”. PROGNOSIS Today, children born with hemophilia no longer have to look forward to crippling complications. Coordinated care by comprehensive team, coupled with advances in medical management, enable children to live more normal lives. EDUCATIONAL IMPLICATIONS Attempt to make the student’s life as normal as possible. Encourage participation in activities which increase socialization. Activity restrictions. Activities requiring extra pressure on joints should be avoided, as should contact sports SEE: HEALTH CARE PLANS - Hemophilia 14 HIV/AIDS WHAT IS IT? Human immunodeficiency virus (HIV) infection causes a broad spectrum of disease and a varied clinical course. Acquired immunodeficiency syndrome (AIDS) represents the most severe end of the clinical spectrum. CAUSE Modes of transmission include sexual contact, especially associated with trauma to the rectal or vaginal mucosa; transfusion of contaminated blood or blood products; and use of contaminated needles. The virus can also be transmitted perinatally from mother to fetus. Risk factors include multiple sexual contacts with homosexual and bisexual men, heterosexual contact with someone who had HIV/AIDS or is at risk for it, present or past abuse of IV drugs, and transfusions of blood products. Prenatal exposure to HIV/AIDS also increases the risk of HIV/AIDS in infants; as does breast feeding, if the mother has HIV/AIDS or is at risk for it. TREATMENT No cure has been found for AIDS. Pharmacologic treatment for HIV disease uses drugs that slow the replication of the virus, drugs that prevent occurrence or the reoccurrence of opportunistic infections, and those that boost the immune system. PROGNOSIS The time between probable exposure to the causative Human Immunodeficiency Virus (HIV) and diagnosis averages 1-3 years. In children, incubation time appears to be shorter, with a mean of 8 months. Patients may be HIV positive and asymptomatic for varying time periods. EDUCATIONAL IMPLICATIONS Standard Precautions should be practiced at all times. No one will always know which students or staff are carrying transmissible diseases. Students who are infected with HIV should attend the school and classroom to which they would be assigned if they were not infected. They are entitled to all of the services, privileges and rights accorded to other students. Decisions about any changes in the educational program of a student who is infected with HIV/AIDs should be considered individually, confidentially, and with competent medical advice. The design of an individual student’s program should be based on educational needs and not the status regarding HIV/AIDS infection. Exclusion or segregation of students solely on the basis of HIV infection is never appropriate. In the event of an outbreak of chickenpox, measles or any other communicable disease the parent/guardian of the student with known HIV/AIDS should be notified. SEE HEALTH CARE PLAN – HIV/AIDS 15 HYDROCEPHALUS WHAT IS IT? Hydrocephalus is the result of an imbalance in the productions and absorption of cerebrospinal fluid within the brain’s ventricular spaces. Occurring most often in early infancy, it can also occur in late childhood or adults. The resulting compression can damage brain tissue. CAUSE Obstruction of the cerebrospinal fluid flow can result from faulty fetal development, infection, tumor, cerebral aneurysm, a blood clot, or an abnormality of the brain or skull which blocks the flow of the fluid. TREATMENT AND PROGNOSIS Without surgery, the prognosis is poor. With early detection and surgery, the prognosis improves but remains guarded. Even after surgery, such complications as mental handicaps, impaired motor function, and vision problems can persist. SIGNS OF SHUNT MALFUNCTION/INFECTION TODDLERS OLDER CHIDREN 1) Headache Same as Toddler, plus: 2) Vomiting, abdominal pain 1) Personality change 3) Seizures 2) Deterioration in school performance 4) Swelling redness, tenderness 3) Decrease in sensory or motor function At shunt on scalp 5) Lethargy 6) Increase in head size (circumference) 7) Fever EDUCATIONAL IMPLICATIONS Attempt to make the student’s life as normal as possible. Be aware of signs and symptoms of complications, i.e. headache. Activity restrictions may be recommended by physician. As student grows may need to have shunt adjusted which will require hospitalization and need for alternative forms of learning, e.g. homebound school. Internal drainage systems with plastic tubes require periodic surgery to lengthen the shunt as the child grows older, to correct malfunctioning, or to treat infection. Approximately one–third of treated children are both intellectually and neurologically normal, while one-half have neurological disturbances. The intelligence is in the low range of normal with more pronounced nonverbal skill deficits. May require OT/PT referrals. SEE HEALTH CARE PLAN – Ventriculo-peritoneal shunt 16 JUVENILE RHEUMATOID ARTHRITIS (JRA) WHAT IS IT? JRA is a chronic inflammatory disease of the connective tissue of the joints. Arthritis refers to joint swelling and loss of function due to pain and swelling. Signs and symptoms of JRA include: fever, skin rash, joint stiffness, swelling with mild warmth, pericarditis, and inflammation of the eye. CAUSE The cause of JRA is unclear, although it has been suggested that an infection or defect in the body’s immune system may be responsible. TREATMENT Successful management of JRA usually involves the use of anti-inflammatory drugs, physical therapy, carefully-planned nutrition and exercise, and regular eye examinations. Both student and parents must be involved in therapy. Splints may also be used (often at night) to maintain good functional position. Surgery is usually limited to soft-tissue releases to improve joint mobility. PROGNOSIS Usually, the prognosis for JRA is good, though disabilities can occur. EDUCATIONAL IMPLICATIONS Fevers and rashes associated with JRA are not contagious but may cause irritability, fatigue, and absences from school. Hospitalization may be necessary. Motor skills --- writing, using scissors, carrying books, changing classes, staying in one position, dressing, eating. Activity restrictions -– rest periods. Signs and symptoms of health problems and emergency procedures. Chronic Illness --- decreased self-esteem, depression and anger. PT/OT referral to promote motor skills. SEE HEALTH CARE PLAN - Juvenile Rheumatoid Arthritis 17 MARFAN SYNDROME WHAT IS IT? Marfan syndrome is a hereditary disorder of connective tissue characterized by abnormal length of the extremities, especially of the fingers and toes, subluxation of the lens, congenital anomalies of the heart, and other deformities. CAUSE Marfan syndrome is caused by a defect in the gene that encodes the structure of fibrillin, and the elastic fibers, the essential components of connective tissue that appears to contribute to its strength and elasticity. Marfan syndrome is present at birth, but may not be diagnosed until adolescence or young adulthood. TREATMENT Management and treatment of Marfan syndrome is best discussed and understood by dealing with body systems. In the skeletal system, curvature of the spine and deformity of the chest represent the most serious problems. Either can be disfiguring or impair the function of the heart and lungs. Both should be routinely evaluated annually by a knowledgeable doctor. Curvature can be corrected with bracing, and sometimes surgery may be necessary. The eyes require careful attention from early childhood. Corrective lenses or contacts may be needed. Because of an increased risk of retinal detachments, injury during work and sports should be avoided. The cardiovascular system attracts much patient and doctor attention. The first line of defense is routine evaluations annually. Irregularities of the heartbeat may require medication. However, if the function deteriorates further, surgical repair becomes necessary. Narrowness of the roof of the mouth and smallness of the lower jaw produce crowding of the teeth and , good dental care and early evaluation by an orthodontist are needed, A balanced, nutritious diet; restriction of salt, cholesterol, and animal fats; and avoidance of smoking improves anyone’s ability to cope with Marfan syndrome. PROGNOSIS There is no cure. Early diagnosis and careful management have greatly improved the prognosis and increased life expectancy. 18 MARFAN SYNDROME (continued) EDUCATIONAL IMPLICATIONS Knowledge of medication needs. Signs and symptoms of health problems and emergency procedures. Activities – limitations and guidelines that promote optimum development, as well as protect the student from harm. All Marfan syndrome patients should avoid lifting heavy objects and contact sports. People with Marfan syndrome should not smoke and avoid extremes of air pressure or rapid changes in pressure. SEE: HEALTH CARE PLAN - Marfan Syndrome 19 MUSCULAR DYSTROPHY (MD) WHAT IS IT? Muscular Dystrophies (MDs) constitute the largest and most important single group of muscle diseases of childhood. They all have a genetic origin on which there is gradual degeneration of muscle fibers, and they are characterized by progressive weakness and wasting of symmetric groups of skeletal muscles, with increasing disability and deformity. In all forms of MD there is insidious loss of strength, but each type differs in regard to muscle groups affected, age of onset, rate of progression, and inheritance patterns. The most common form of MD in children is Duchenne muscular dystrophy. Duchenne affects males almost exclusively. Evidence of muscle weakness usually appears at three years of age. CAUSES Little is known about the cause of any type of MD. The specific type of MD is diagnosed by which gene is defective. Scientists continue to search for the genetic defects that cause other forms of muscular dystrophy. . TREATMENT Treatment of MDs consists mainly of supportive measures. Orthopedic devices, exercise, physical therapy, and surgery to correct contractures can help preserve mobility and independence. Medication can relieve stiffness but not muscle weakness. Family members who are carriers of MD should receive genetic counseling regarding the risk of transmitting this disease. PROGNOSIS Life-span is shortened. There is no cure and no way to arrest the disease. EDUCATIONAL IMPLICATIONS Team approach including parents, doctor, psychologist, physical therapist, and teachers. Activity restrictions. Guidelines that promote optimum development, as well as protect the student from harm. Avoid long periods of inactivity. Social skills, living skills and self-esteem. Signs and symptoms of health problems and emergency procedures. SEE: HEALTH CARE PLAN - Muscular Dystrophy 20 OSTEOGENESIS IMPERFECTA (OI) WHAT IS IT? OI refers to a group of heterogeneous inherited disorders of connective tissue characterized by connective tissue and bone defects. CAUSE Persons with OI appear to have abnormal precollagen that prevents the formation of collagen, the major component of connective tissue. At present there are four types: Type I – Mild bone fragility; blue sclera; normal teeth; presenile deafness (20-30 yrs); autosomal-dominant inheritance. Two-thirds of cases are type I. Type II – Lethal, stillborn or die in early infancy, severe bone fragility; multiple fractures at birth; auto-recessive inheritance. Ten percent (10%) of cases are type II . Type III – Severe bone fragility leads to severe progressive deformities; normal scleral; marked growth failure; most autosomal-recessive; short statue; variable deformity; autosomal-dominant. Type IV – Mild to moderate bone fragility; normal scleral; short stature; variable deformity; autosomal-dominant. Six percent (6%) of OI cases are type IV. TREATMENT The treatment is primarily supportive. Several drugs have been tried but have had limited benefits. Braces and splints help support limbs, prevent fractures and aid ambulation. Physical therapy helps to prevent diffuse osteoporosis and strengthen muscles. Exercises are usually simple ones against light resistance or water exercises with swimming. Sports are encouraged for those with mild disease. Surgery is sometimes used to correct deformities i.e. to insert a rod to provide stability. PROGNOSIS Wide individual variability with early mortality among severely affected infants. The incidence of fractures decreases at puberty with the production of hormones. After adolescence, the likelihood of fracture diminishes, although inactivity, pregnancy, or lactation can enhance the likelihood of fracture. The peak ages for fractures are between 2 and 3, and 10 and 15 years. EDUCATIONAL IMPLICATIONS Careful handling to prevent fractures. Support when turning, positioning and moving, diaper changing (lift by buttocks – not ankles). Activities – limitations and guidelines that promote optimum development, as well as protect the student from harm. Wear protective gear, i.e. helmet. Children with OI have normal intelligence, are highly verbal and learn easily. Social skills, living skills and self-esteem. Signs and symptoms of health problems and emergency procedures. SEE: HEALTH CARE PLAN - Osteogenesis Imperfecta 21 PRADER-WILLI SYNDROME WHAT IS IT? Prader-Willi syndrome is a rare genetic disorder, which affects development and growth. Estimates of its incidence vary; with females slightly more prone than males. Typically the affected child will be small and unusually floppy at birth, with abnormal limb development and disproportionately small hands and feet. Around half of all children with Prader-Willi syndrome will have fair skin, blonde hair and blue eyes, regardless of what their family members look like. The affected child will still reach developmental milestones- such as sitting, crawling and walking- but at a much later stage than normal. The average IQ is around 70. The poor muscle tone that makes sucking difficult for the baby will later contribute to speech development problems. The child may have stunted growth, delayed onset of puberty, scoliosis, kyphosis, diabetes, dental problems, sleep apnea, short tem memory loss, and behavioral problems. A feature of Prader-Willi syndrome is the child’s voracious and insatiable appetite, which often leads to obesity. CAUSES It is a rare genetic disorder. Research indicates that missing genes on chromosome 15 contributed by the father, causes Prader-Willi syndrome. TREATMENT There is no known cure and no means of prevention. Treatment is aimed to ease some of the associated problems such as: weight control problems and behavior problems, learning disabilities, speech and language difficulties, orthopedic treatment for scoliosis or kyphosis, hormone therapy to increase muscle mass and/or sexual development. PROGNOSIS The effects of the syndrome can be minimized; however, the effects continue to be a lifelong problem, and independent living is rarely successful. EDUCATION IMPLICATIONS Weight control problems - avoid food rewards and opportunities to overeat. Increase in behavior problems - pre-plan, avoid arguments, and anticipate. Team approach including parents, doctor, nutritionist, psychologist, and special education teachers. SEE: HEALTH CARE PLAN - Prader Willi Syndrome 22 RENAL DISEASE WHAT IS IT? Chronic renal disease occurs whenever there is irreversible damage to the kidneys. When functioning normally, kidneys dispose of body waste and regulate the body content of essential substances. Common symptoms of early kidney disease include: burning and/or increased frequency of urination, blood in the urine, low back pain, puffiness around the eyes, swollen ankles, high blood reassure, and/or headaches. Chronic renal disease can occur at any age and from many underlying diseases. It can be mild or severe, depending upon the specific disease, and the part of the kidney involved. Frequently, chronic renal disease can be treated by diet and medications, and the progress of the disease can be halted. In some cases, it can progress to end-stage renal disease which requires treatment by dialysis and /or kidney transplant. TREATMENT Treatment must be individualized. It includes diet modifications and medications. Surgery can be beneficial for some conditions. Diet modifications include controlling salt and fluid intake. Medications include diuretics, steroids and blood pressure medications. Treatment for end-stage renal disease consists of dialysis and /or kidney transplant. Dialysis removes waste products and excessive salt or water from the blood stream. This procedure can be done at a dialysis center, at home, or at school using a variety of methods and techniques. It must be accompanied by dietary modifications and medications. Whenever possible, a kidney transplant will be performed. When successful, adequate kidney function is restored and the need for chronic dialysis eliminated. The main problem with kidney transplants continues to be rejection. The drugs used to treat or prevent rejection increase the child’s susceptibility to infections. If the kidney is rejected, dialysis treatments followed by another kidney transplant can be performed. PROGNOSIS Chronic renal disease can be improved and managed through early diagnosis and treatment. Although children and end-stage renal disease require continued medical intervention, many children lead active lives and become productive adults. EDUCATIONAL IMPLICATIONS Medication needs. Important consideration – susceptible to infections, cold. Notify parent/guardian of any exposure to communicable diseases. Activity restrictions. Guidelines that promote optimum development, as well as protect the student from harm. Should avoid heavy lifting. Diet restrictions. Social skills, living skills, and self esteem. Signs and symptoms of health problems and emergency procedures. SEE HEALTH CARE PLAN - Renal Disease 23 REYE’S SYNDROME WHAT IS IT? This is an acute childhood illness which affects all organs of the body, but especially the liver and brain. Reye’s syndrome affects children from infancy to adolescence and occurs equally in boys and girls. It is defined as a two-phase illness because it generally occurs in conjunction with a previous viral infection, such as the flu or chicken pox. The disorder commonly occurs during recovery from a viral infection, although it can also develop 3 to 5 days after the onset of the viral illness. Reye’s syndrome is often misdiagnosed as encephalitis, meningitis, diabetes, drug overdose, poisoning, sudden infant death syndrome, or psychiatric illness. Symptoms include persistent or recurrent vomiting, listlessness, personality changes such as irritability or combativeness, disorientation, delirium, convulsions, and loss of consciousness. If these symptoms are present during or soon after a viral illness, medical attention should be sought immediately. CAUSES The cause of Reye’s syndrome is unknown. However studies have shown that using aspirin or salicylate-containing medications to treat viral illness increases the risk. TREATMENT There is no cure. Successful management, which depends on early diagnosis, is primarily aimed at protecting the brain against irreversible damage by reducing brain swelling, reversing the metabolic injury, preventing complications in the lungs, and anticipating cardiac arrest requiring hospitalization, IV’s monitoring of blood levels, and seizure precautions. PROGNOSIS Recovery from Reye’s syndrome is directly related to the severity of the swelling of the brain. Some people recover completely, while others may sustain varying degrees of brain damage. Those cases in which the disorder progresses rapidly and the patient lapses into a coma have a poorer prognosis that those with a less severe course. Statistics indicate that when diagnosed and treated in its earliest stages, chances of recovery are excellent. When diagnosis and treatment are delayed, the chances for successful recovery and survival are reduced. Unless diagnosed and treated, death is common, often within a few days. EDUCATIONAL IMPLICATIONS Educate parents about Reye’s syndrome. Aspirin and combination products containing aspirin should not be given to children under 18 years of age. Notify parents if student complains of vomiting, fever, sweating, listlessness, irritability, or confusion after viral illness. 24 SCOLIOSIS WHAT IS IT? Scoliosis is an abnormal curvature of the spine. The spine curves away from the middle or sideways. A lateral curvature of the spine, scoliosis may be to the right (more common in thoracic curves) or to the left (more common in lumbar curves). Rotation of the vertebral column around its axis occurs and may cause rib cage deformity. There are three types of scoliosis: congenital, neuromuscular and idiopathic. Idiopathic scoliosis in adolescents is the most common type. Some people may be prone to the curving of the spine. Most cases occur in girls. Curves generally worsen during growth spurts. Scoliosis in infants and juveniles are less common. CAUSE There are three general causes of scoliosis: Congenital scoliosis is due to a problem with the formation of vertebrae or fused ribs during prenatal development. Neuromuscular scoliosis is caused by problems such as poor muscle control or muscular weakness or paralysis due to diseases such as cerebral palsy, muscular dystrophy, spina bifida, and polio. Idiopathic scoliosis is of unknown cause, and appears in a previously straight spine. TREATMENT Treatment depends on the cause of the scoliosis, the size and location of the curve and how much more growing the patient is expected to do. Most cases of adolescent idiopathic scoliosis (less than 20 degrees) require no treatment, but should be checked often, about every 6 months. As the curve gets worse (above 25 to 30 degrees in a child who is still growing), bracing is usually recommended to help slow the progression of the curve. A back brace does not reverse the curve, instead it uses pressure to help straighten the spine. The brace can be adjusted with growth. Bracing does not work in congenital or neuromuscular scoliosis, and is less effective in infantile and juvenile idiopathic scoliosis. Curves of 40 degrees or greater usually require surgery because curves this large have a high risk of getting works even after bone growth stops. A brace may be required to stabilize the spine after surgery, PROGNOSIS The outcome depends on the cause, location, and severity of the curve. The greater the curve, the greater the chance the curve will get worse after growth has stopped. Mild cases treated with bracing alone do very well. People with surgically corrected idiopathic scoliosis also do very well and can lead active health lives. Babies with congenital scoliosis have a wide variety of underlying birth defects. Management of this type is difficult and often requires many surgeries. EDUCATIONAL IMPLICATIONS Physical activity, based on interventions being used. Should avoid vigorous sports. Encourage self-esteem and socialization with peers. Skin integrity (due to braces, etc.) 25 SEIZURE DISORDERS EPILEPSY WHAT IS IT? Seizure disorders are a physical condition that occurs when there is a sudden brief change in how the brain works. When brain cells are not working properly, a person’s consciousness, movement or actions may be altered for a short time. These physical changes are called seizures. Seizures affect people in all nations and of all races. CAUSE There are many causes of seizures, including brain injury, viral infections, elevated fevers, imbalance of body fluids or chemicals, or alcohol or drug withdrawal. Sometimes the cause cannot be determined. A single seizure does not mean that the person has epilepsy. TREATMENT Seizure disorder can usually be treated successfully with consistent use of medication. The goal of treatment is to control the seizure activity with the least number of side effects. Medications can affect the student’s behavior, learning, and sleeping. It is very important to make sure the student is getting the right amount of medicine. Not enough medicine can result in increased numbers of seizures, and too much medicine can increase the chance of side effects. Reporting your observations to parents can be very helpful. With certain types of epilepsy, medication is not effective and surgery may be needed. Another treatment option is vagal nerve stimulation, a recently approved therapy in which an electrical device is implanted in the affected person’s shoulder to periodically stimulate a cranial nerve. For persons with certain types of seizures, a special high-fat, low carbohydrate diet may reduce seizures if other treatments do not work. Types of Seizure Simple partial seizures (formerly known as focal seizures): Characterized by strange or unusual sensations, for example, odors or visual abnormalities. Sudden or restless movement, hearing or vision distortion, stomach discomfort, a sudden sense of fear are all characteristics of this type of seizure, but consciousness is not impaired. Complex partial seizures (formerly psychomotor or temporal lobe seizures): characterized by complicated motor action involving loss of awareness. The person appears dazed and confused - random walking, mumbling, head turning, or pulling at clothing may be observed. These automatisms or repeated idiosyncratic motions cannot be recalled by the person. In children, this seizure should not be confused with the absence seizure described below. 26 SEIZURES DISORDERS (continued) PROGNOSIS With proper treatment, most children with seizures can expect to live full productive lives. EDUCATIONAL IMPLICATIONS Seizures may interfere with the student’s ability to learn. Some students may have additional learning disabilities along with the seizure disorder. The behavior exhibited during seizures can be frightening to others. Due to these attitudes and fears, self-esteem and social acceptance of the student can be affected. The school can assist by providing education to staff and students, training for intervention during a seizure and detection of an emergency situation and implementation of emergency procedures. If the student has the type of seizure characterized by brief periods of fixed staring, he or she may be missing parts of what the teacher is saying. It is important that teachers and school staff be informed about the child’s condition, possible side effects of medication and what to do in case a seizure occurs at school. Students can benefit the most when the family and school work together to promote personal growth and independence in children with epilepsy. SEE HEALTH CARE PLAN - Seizures Disorders 27 SEVERE ALLERGIC REACTION WHAT IS IT? Anaphylaxis is a severe allergic reaction that occurs rapidly and causes a life threatening response involving the whole body. This reaction can lead to difficulty breathing and shock, ultimately leading to death. The reaction is triggered by certain foods or food ingredients, insect stings and medications. CAUSES Insect stings or bites – ants, bees, hornets, yellow jackets, wasps, deer flies, black flies, and yellow flies, snakes. Foods – milk*, eggs*, wheat*, nuts*, fish or shellfish*, soy*, chocolate, pork, chicken, corn, citrus fruits, tomatoes, spices (*most common). Drugs - antibiotics, anesthetic agents, vaccines, dyes used for x-rays. Latex – especially students with Spina Bifida. TREATMENTS Signs and Symptoms – itchy eyes, dry cough, widespread hives, swelling in eyes, face, tongue and throat, wheezing, nausea, dizziness, abdominal pain, vomiting, difficulty breathing and/or swallowing, confusion, loss of cardiovascular tone resulting in blood pressure drop and shock, feeling of impending disaster. Successful outcome depends on a rapid recognition and institution of treatment. (Call 911 immediately.) Administer epinephrine using the EPI-pen or other auto injection device provided by parent/guardian and as ordered by the physician. Stay with child. Check for stinger and remove, if possible. Can use ice on area. Epinephrine is effective for approximately 20 minutes, and a repeat dose may be necessary (for this reason, 911 is called to transport student for further observation and treatment). PROGNOSIS In severe cases, death may occur if emergency treatment is not given. EDUCATIONAL IMPLICATIONS Staff education and training in emergency procedures and protocols. Assist student in avoidance of allergen with pre-planning policies such as class hand-washing at beginning of the day and at lunch if student in class has severe allergy to peanuts or other food products. Avoid areas where stinging and biting insects congregate and nest for students with severe allergies to insect bites and stings Keep trash cans covered so as not to attract insects. Be sure to read labels to identify unsuspected ingredients in food. Direct students not to trade items in cafeteria. SEE: HEALTH CARE PLANS - Severe Allergy 28 SHORT BOWEL SYNDROME (SBS) WHAT IS IT? Short Bowel Syndrome (SBS) is a condition in which nutrients are not properly absorbed due to severe intestinal disease or the surgical removal of a large portion of the small intestine. CAUSES When areas of the small intestine are removed by surgery, or they are missing due to a birth defect, there may not be enough surface area left in the remaining bowel to absorb enough nutrients from food. This condition is particularly likely to develop when one-half or more of the bowel is removed during surgery. Risk factors include diseases of the small intestine that may require surgical intervention, such as Crohn’s disease. Necrotizing enterocolitis is a common cause of short bowel syndrome in infants. TREATMENT Treatment is aimed at relieving symptoms, and may include a high-calorie diet, vitamins and minerals, medications to slow down the normal movement of the intestine, parenteral nutrition. PROGNOSIS The condition may improve over time if it occurs as a result of surgery. There may be a gradual improvement in nutrient absorption. EDUCATIONAL IMPLICATIONS Medication needs. Susceptible to infections. Frequent bowel movements - accommodate toileting. Diet restrictions. Social skills, living skills and self-esteem. Signs and symptoms of health problems and emergency procedures. SEE: HEALTH CARE PLAN - Short Bowel Syndrome 29 SICKLE CELL ANEMIA WHAT IS IT? A congenital hemolytic anemia that occurs primarily in African Americans, sickle cell anemia results from red blood cells becoming sickle-shaped and having a shortened life span. The sickle cells are rigid and tend to become clumped in blood vessels. These cells impair circulation, resulting in chronic ill health, periodic crises, long-term complications and premature death. Symptoms usually appear between one and four years of age, but occasionally appear earlier. The child is pale, tires easily, eats poorly, and may complain of painful swelling in fingers or pain in arms, legs, back, or abdomen. CAUSE Sickle Cell anemia is inherited from both parents. One in every ten blacks in the United States has the sickle cell trait; each child has a 25% chance of having sickle cell anemia. If he inherits only one gene from one parent, he too will be a carrier, and is said to have the “sickle cell trait”. A person carrying the trait usually has no health risks himself. TREATMENT While sickle cell anemia cannot be cured, treatment can alleviate symptoms and prevent painful crises. During crisis periods, medications are used to relieve pain, antibiotics to fight infections, blood transfusions, oxygen therapy, and large amounts of oral or I.V. fluids may be needed. PROGNOSIS The prognosis of sickle cell anemia is affected significantly by the quality of medical care and the child’s and family’s response to the lifelong disease. EDUCATIONAL IMPLICATIONS Frequent school absence. Fatigue Access to fluids throughout the day. Bathroom privileges as needed. Signs and symptoms of impending crisis and emergency procedures. Physical education activities, as tolerated. In severe forms of disease, exercise and temperature changes can initiate a crisis. SEE: HEALTH CARE PLAN - Sickle Cell Anemia 30 SPINA BIFIDA (SB) WHAT IS IT? Spina bifida is a serious birth abnormality in which the spinal cord is malformed and lacks its usual protective skeletal and soft tissue coverings. In most cases, spina bifida is obvious at birth because of malformation of the spine. The spine may be completely open, exposing the spinal cord and nerves. More commonly, the spine abnormality appears as a mass on the back covered by membrane (meninges) or skin. Spina bifida may occur anywhere from the base of the skull to the buttocks. About 75% of abnormalities occur in the lower back (lumbar) region. In rare instances, the spinal cord malformation may occur internally, sometimes with a connection to the gastrointestinal tract. Effects of spinal bifida on various body systems can be mild to severe. Nerve involvement can affect sensation, motor abilities, and/or bowel and bladder control. Some children will walk independently, while others will need assistive devices. Hydrocephalus (water on the brain) can prevent spinal fluid from leaving the brain and being reabsorbed into the blood stream. If untreated, hydrocephalus can cause pressure to build in the brain, eventually causing brain damage. Hydrocephalus is controlled by a surgical procedure called “shunting” which relieves the fluid buildup in the brain. CAUSE Spina bifida may occur as an isolated abnormality or in the company of other malformations. Spina bifida is caused by the combination of genetic factors and environmental influences that bring about malformation of the spine and spinal column. TREATMENT Aggressive surgical and medical management have improved the survival and function of infants with spina bifida. Initial surgery may be carried out during the first days of life, providing protection against injury and infection. Subsequent surgery is often necessary to protect against excessive curvature of the spine, and in the presence of hydrocephaly, to place a mechanical shunt to decrease the pressure and amount of cerebrospinal fluid in the cavities of the brain. Because of weakness or paralysis below the level of the spine abnormality, most children will require physical therapy, bracing, and other orthopedic assistance to enable them to walk. A variety of approaches including periodic bladder catheterization, surgical diversion of urine, and antibiotics are used to protect urinary function. Although most individuals with spina bifida have normal intellectual function, learning disabilities or mental retardation occur in a minority. This may result, in part, from hydrocephaly and/or infections of the nervous system. Children so affected may benefit from early educational intervention, physical therapy, and occupational therapy. Counseling to improve self-image and lessen barriers to socialization becomes important in late childhood and adolescence. 31 SPINA BIFIDA (continued) PROGNOSIS Children with spinal bifida present complex medical problems that can be managed. The child can become an active, functioning member of society. EDUCATIONAL IMPLICATIONS Time and privacy for catheterization. Increased fluid and fiber needs. Assistance with perceptual and special coordination skills. Mobility and accessibility of environment. Temperature precautions. Latex precautions SEE: HEALTH CARE PLANS - Spina Bifida and Ventriculo-peritoneal shunt 32 TOURETTE SYNDROME (TS) WHAT IS IT? Tourette Syndrome (TS) is a multiple neurological disorder. It often starts in early childhood before the child enters school. Symptoms are characterized by tics (which are involuntary body movements and uncontrollable vocalizations and/or verbalizations). The motor manifestations may include blinking, nose twitching, facial grimacing, or shoulder, arm or leg. jerking. The verbal tics may include hissing, snorting, barking, clucking or more explicit verbal outbursts of words and phrases which erupt without warning. In addition to motor and phonetics, as many as 50% of adults and students with TS have recurring thoughts (obsession) and/or repetitive habits (compulsions). Other common behavioral problems associated with TS in childhood involve the regulation of attention and activity. CAUSE Researchers have not established a definite cause. It is thought to be caused by a chemical imbalance in the neurotransmitter system by which the brain regulated movement and behavior. Genetic studies indicate that TS is inherited as a dominant gene that may produce different symptoms in different family members. Males are afflicted about three times more than females. Only about 10% of the children will have symptoms severe enough to ever require medical attention. TREATMENT Because tic symptoms do not often cause impairment, the majority of people with TS require no medication for tic suppression. However, effective medications are available for those whose symptoms interfere with functioning. There is no one medication that is helpful to all people with TS, nor does any medication completely eliminate symptoms. Effective medication is also available to treat some of the associated neurobehavioral disorders that can occur in patients with TS . PROGNOSIS Although TS can be a chronic condition with symptoms lasting a lifetime, most people with the condition experience their worst symptoms in their early teens, with improvement occurring in the late teens and continuing into adulthood. As a result, some individuals may actually become symptom free or no longer require medication for tic suppression. EDUCATIONAL IMPLICATIONS 50% of the children with TS have specific learning disabilities, perceptual-motor problems, attention deficit disorders, hyperactive behavior, and abnormalities of psychoeducational testing. Medication needs. Social skills, self-esteem, peer interaction. Behavior modification, moderately structured classroom. Recording device and/or computers for reading and writing problems. A safe place for “time out”. Opportunity for physical movement, possible need for PT/OT referrals. SEE: HEALTH CARE PLAN - Tourette Syndrome 11/11 33 TRAUMATIC HEAD INJURY WHAT IS IT? Traumatic head injury is an insult to the brain caused by an external physical force that may produce a diminished or altered state of consciousness. This results in impairment of cognitive abilities or physical functioning. It can also result in the disturbance of behavioral or emotional functioning. These impairments can be either temporary or permanent and cause partial or total functional disability or psychosocial maladjustment. CAUSE Traumatic head injury can be sustained in a number of ways, but most frequently is the result of vehicular accidents or a severe blow to the head. TREATMENT Initial treatment focuses on the maintenance of life. The neurological and respiratory systems as well as control of bleeding are the first concerns. If breathing is affected, a tracheostomy and/or ventilator may be used. Medication and/or surgery will be used to control brain swelling and intracranial pressure. When medically stable but in coma, treatment varies depending on the effects of the injury. Common effects include seizures, motor impairments, anger, agitation and confusion. Long-term recovery can continue for many years. Memory, social skills, and attention are often affected. Treatment includes cognitive rehabilitation, improvement of judgment, attention and social skills, and the development of cued and self-monitoring systems. PROGNOSIS Not all individuals who sustain severe head injuries survive, and only a small percent of those who survive recover completely. Moderate to mild head injuries can impact life outcome greatly and are often not effectively treated. Recovery is affected by the uniqueness of each individual and the complexity of diagnoses; no one program or method can be prescribed. Many survivors require a lifelong plan and support to function in the community. EDUCATIONAL IMPLICATIONS Medication needs. Team approach including parents, doctor, psychologist, other health care agencies involved, i.e. counseling, developmental services, physical and occupational therapists, school nurse, and teachers. Activity restrictions. Guidelines that promote optimum development, as well as protect the student from harm. Social skills, living skills and self-esteem, peer interaction. Signs and symptoms of health problems and emergency procedures. Behavior modification, structured environment, presents level of developmental functioning. SEE: HEALTH CARE PLAN - Traumatic Head Injury 34