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Transcript
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
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