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CHALLENGED CHILD AND IMPLICATIONS OF NURSING

I. INTRODUCTION
The term, handicap, refers to an inability to achieve the full potential or fulfill a
role that is normal for that individual as a result of disease, impairment or
disability. It is the effect of the conditions, e.g. inability to participate in
competitive sports like hockey, cricket or skating in post-polio lameness or social
isolation resulting from mental retardation, deaf-mutism or epilepsy. Disease on
the other hand, simply refers to a specific health problem like cleft palate, arthritis
or congenital heart disease. Impairment refers to any loss or abnormality of
psychological, physiological or anatomical structure or function like autism,
impaired vision or loss of a limb in an accident. Disability refers to an inability to
carry out certain activities considered normal for the individual’s age, sex, etc. as a
result of impairment. The sequence of events leading to a handicap includes insult
(injury or disease) then impairment then disability and finally handicap (win).
Handicapped children refers to those with presence of an impairment or other
circumstances, those are likely to interfere with normal growth and development or
with the capacity to learn. Primary handicap condition leads to secondary handicap
conditions, e.g. blindness leads to economical handicapped situation. The child
may have single or multiple handicap condition. Major causes of handicapped
conditions in children re congenital anomalies, genetic disorders, poliomyelitis and
other communicable diseases, perinatal conditions, malnutrition, accidental injury
and sociocultural factors.
II. DEFINITION
1. IMPAIRMENT: Impairment refers to any loss or abnormality of
psychological, physiological or anatomical structure or function like autism,
impaired vision or loss of a limb in an accident.
- Sudhakar
2. DISABILITY: Disability refers to an inability to carry out certain activities
considered normal for the individuals age, sex, etc. as a result of impairment.
- Rimple sharma
3. HANDICAP: Handicap is defined as a disadvantage for a given individual
resulting from an impairment or a disability, that limits and prevent the
fulfillment of a role, which is normal for that individual, depending on age,
sex, social and cultural functions.
- WHO

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4. HANDICAPPED CHILDREN: Handicapped children refers to those with
presence of an impairment or other circumstances, those are likely to
interfere with normal growth and development or with the capacity to learn.
- Wongs
III. ETIOLOGY OF PEDIATRIC HANDICAP
I. Physical (orthopedic): Children affect with Congenital bony defect,
Sequelae of fractures, arthritis, Residual rickets, Chondrodystrophies,
Amputation due to accidental injury are some causes for physical
problems.
II. Neurologic: Some children may affect with, mental retardation,
behavioral or learning disabilities, post-polio residual paralysis (PPRP),
postmeningitis, encephalitic sequelae. Other than this some neurological
conditions like cerebral palsy, epilepsy, convulsive disorders,
degenerative disorders of central nervous system may cause neurological
handicap in children. The birth defects such as hydrocephalus, spina
bifida also may cause some times.
III. Sensory: Visual problems such as blindness (partial or complete) or
refractory errors and auditory impairment like deaf, dumb, mutism,
partial hearing loss may be a reason. Then dysarthria, stuttering,
dysphonia, stammering may affect the speech in the child.
IV. Chronic systemic diseases: Heart disease (both congenital and
acquired), bronchial asthma, diabetes mellitus, malabsorption syndrome,
muscular dystrophy may be another causes.
V. Social: Some social problems such as child abuse and neglect, drug
addiction, orphan may also affect..
IV. CAUSES OF HANDICAPS
A baby may be either born with handicaps or acquire it, later in life due to any
of the following reasons:
A. Preconceptual factors
1. Genetic and chromosomal factors: Diseases that are transmitted
genetically may be autosomal dominant, autosomal recessive or sex-linked.
An alteration in genes and chromosomes due to any defect or mutation, can
initiate the process of malformation that may lead to physical or mental
disability.

B. Antenatal and intranatal factors


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1. Asphyxia: Lack of oxygen supply to the fetal brain during gestation, due to
placental factors may lead to serious mental defects in fetus. Prolonged and
difficult tabor may worsen the condition of neonate.
2. Birth trauma: Prolonged labor and difficult instrumental delivery may
cause cerebral damage. In case of breach delivery, hyperextension of head or
stretching of vertebral column may give rise to spinal cord injury that may
cause physical impairments in the baby.

C. Postnatal factors

1. Biochemical disorders: In the neonatal period, baby is at high-risk of


hypoglycemia, hypocalcemia or kernicterus which can cause cerebral
damage.
2. Infections: Infections like meningitis, encephalitis, poliomyelitis, etc. result
in neurological and physical defects and disability.
3. Trauma: Cerebral contusion, cerebral hemorrhage and head injuries after
road traffic accidents can lead to neurological deficits in the person. Road
traffic accidents may also lead to crush injuries of limbs, leaving the person
crippled and handicapped.
4. Nutritional deficiencies: Nutritional deficiencies like Vitamin A deficiency
and Vitamin D deficiency can lead to night blindness, skeletal deformities,
etc.
5. Maternal factors: Maternal factors leading to handicaps in babies are Rh
incompatibility, Medications given to the mother during first trimester of
pregnancy. Some other conditions such as Multiple pregnancies, Forceps
delivery, premature rupture of membrane, Cord prolapse, Maternal
Hypertension or diabetes etc.
V. TYPES OF HANDICAPS
A) PHYSICAL HANDICAPS
1. Blind: Visual impairment, also known as vision impairment or vision

loss, is a decreased ability to see to a degree that causes problems not


fixable by usual means, such as glasses. Some also include those who
have a decreased ability to see because they do not have access to glasses
or contact lenses. Visual impairment is often defined as a best
corrected visual acuity of worse than either 20/40 or 20/60. The
term blindness is used for complete or nearly complete vision loss. Visual
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impairment may cause people difficulties with normal daily activities
such as driving, reading, socializing, and walking.
2. Deaf: Hearing loss, also known as hearing impairment, is a partial or
total inability to hear. A deaf person has little to no hearing. Hearing loss
may occur in one or both ears. In children, hearing problems can affect
the ability to learn spoken language and in adults it can create difficulties
with social interaction and at work. In some people, particularly older
people, hearing loss can result in loneliness. Hearing loss can be
temporary or permanent. Hearing loss may be caused by a number of
factors, including: genetics, ageing, exposure to noise, some infections,
birth complications, trauma to the ear, and certain medications or toxins.
3. Dumb: It is a speech disorder in which a person lacks the ability to
speak. Trauma or injury to Broca's area, located in the left inferior frontal
cortex of the brain, can cause muteness.
4. Crippled: A cripple is a person with a physical disability, particularly
one who is unable to walk because of an injury or illness.
B) MENTAL HANDICAPS
It includes children with

1. Mental retardation: Intellectual disability (ID), also known as general


learning disability and mental retardation (MR), is a
generalized neurodevelopmental disorder characterized by significantly
impaired intellectual and adaptive functioning. Once focused almost entirely
on cognition, the definition now includes both a component relating to
mental functioning and one relating to an individual's functional skills in
their daily environment. As a result of this focus on the person's abilities in
practice, a person with an unusually low IQ may still not be considered to
have intellectual disability.

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2. Cerebral Palsy: Cerebral palsy (CP) is a form of chronic motor disability
which is non-progressive, non-fatal and yet incurable and results from
damage to the growing brain before or during birth or in postnatal period. It
is the most common cause crippling in children. Though mental retardation
is associated in about 25 to 50% cases of CP, it is, by no means, an essential
feature of the clinical picture.

C) SOCIAL HANDICAPS

1. Orphans: An orphan is someone whose parents have died, are unknown, or


have permanently abandoned them. In common usage, only a child who has
lost both parents due to death is called an orphan. Death or disappearance of,
abandonment or desertion by, or separation or loss from, both parents can
also called an orphan. An orphan does not have any surviving parent to care
for them.

2. Neglected or abused children: Child abuse or child


maltreatment is physical, sexual, and/or psychological maltreatment
or neglect of a child or children, especially by a parent or a caregiver. Child
abuse may include any act or failure to act by a parent or a caregiver that
results in actual or potential harm to a child, and can occur in a child's home,
or in the organizations, schools or communities the child interacts with.
Neglect is a form of abuse where the perpetrator, who is responsible for
caring for someone who is unable to care for themselves, fails to do so. It
can be a result of carelessness, indifference, or unwillingness.

3. Children of divorced or step parents: A separation or divorce is a


highly stressful and emotional experience for everyone involved, but
children often feel that insecurity in their life. At any age, it can be
traumatic to witness the dissolution of your parents marriage and the
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breakup of the family. Inevitably, such a transitional time doesn’t happen
without some measure of grief and hardship.

4. Delinquents: Juvenile delinquency, also known "juvenile offending", is


the act of participating in unlawful behavior as minors (juveniles, i.e.
individuals younger than the statutory age of majority). Most legal
systems prescribe specific procedures for dealing with juveniles, such
as juvenile detention centers and courts, with it being common that
juvenile systems are treated as civil cases instead of criminal, or a hybrid
thereof to avoid certain requirements required for criminal cases.
Depending on the type and severity of the offense committed, it is
possible for people under 18 to be charged and treated as adults.

VI. DIAGNOSIS/ ASSESSMENT OF HANDICAPS

Common features which may be helpful in identifying disabilities are:

 Deviation from normal behavior is the first indicator of physical, mental


or neurolog1cal impairment

 Absence of normal reflexes

 Feeding problems

 Lack of movements or uncoordinated movements

 Abnormal posture of newborn.

VII. MANAGEMENT OF HADICAPPED CHILD

1. Disability intervention/limitation

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The aim is to safeguard against or, at least, halt the progression of the disease
process from impairment to disability and handicap. This can be achieved by two
major strategies,
I. Medical intervention during impairment, the earliest stage.
II. Social and environmental intervention in terms of dependence and social
cost for the disability and handicap, the later stages.
2. Disability Prevention
Disability prevention relates to all the three levels of prevention, namely:
1. Primary prevention by reducing the occurrence of impairment through
vaccination as in poliomyelitis.
2. Secondary prevention by disability limitation through suitable treatment as
in rheumatoid arthritis.
3. Tertiary prevention by preventing the transition of disability into handicap as
in rehabilitation through psychosocial, vocational and medical components.
Handicapping conditions of children can be prevented by improvement of maternal
health and adequate care during periconceptional, prenatal and intranatal period
along with preventive measures during infancy, childhood and adolescents.
The primary prevention can be achieved by the following measures:
 Genetic counseling: Optimum maternal age for producing normal babies is
between 20 to 30 years, this information should be explained to the couples
along with prevention and different aspects of genetic and chromosomal
problems
 Genetic screening of ‘at-risk’ people to prevent inherited diseases like
chromosomal or sex linked congenital anomalies
 Reduction of consanguineous marriages by creating health awareness
 Universal immunization coverage, especially for poliomyelitis and mumps,
measles, rubella (MMR)
 Improvement of nutritional status of mother and children, especially for girl
child, the future mother
 Prevention of iodine deficiency and folic acid deficiency conditions in
periconceptional period
 Essential care in antenatal, intranatal and neonatal periods. Prevention of
maternal and neonatal infections, birth injuries, asphyxia,
hyperbilirubinemia, etc.

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 Avoidance of teratogenic agents in antenatal periods and special care of
high-risk mothers and children
 Medical termination of pregnancy of malformed fetus
 Improvement of health awareness about the preventive measures of
handicapped conditions in children by elimination of causes like
malnutrition, accidental injuries, etc.
VIII.REHABILITATION OF THE HANDICAPPED CHILDREN
Rehabilitation of handicapped children should be approached by combined and co-
ordinated use of medical, social, educational, psychological and vocational
measures for training and retraining the children to the highest possible level of
functional ability. It includes all measures to reduce the impact of disabled and
handicapped conditions to achieve social integration by active participation of the
individual in the community.
Process of rehabilitation should involve the following aspects:
 Medical rehabilitation includes restoration of functions by prosthesis,
artificial limbs, etc.
 Social rehabilitation includes restoration of family and social relationship by
replacement in the family
 Educational rehabilitation includes specialized training and educational
facilities, e.g. Braille for blind, sign language for deaf and dumb
 Psychological rehabilitation includes restoration of personal dignity and
confidence during the period of growth and development and in adult life
 Vocational rehabilitation includes restoration of the capacity to earn a
livelihood. This can be achieved by community participation and social
legislation for the handicapped individual. The community needs to offer
employment opportunities in shops, factories and other business
establishment to the handicaps.
The handicapped child needs to be trained for an independent living with special
training and education. In India, there are more than 150 schools and institutions
for the handicapped. These include day-care centers, special school, (for blind,
deaf and dumb), vocational training centers, special hospitals for crippled children,
etc. These available welfare services of Government of India provide support
services to the handicapped individuals and enabling the families to assume a large
share of rehabilitation within the family cycle. Non-governmental organizations
(NGO) are also working along with government institutions for training, vocational

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guidance, counseling, manpower development, research, assistance for supply of
aids and appliances to the handicapped and dissemination of information.
The Ministry of Welfare, government of India has introduced a comprehensive Bill
in the parliament known as ‘Persons with disabilities’ (equal opportunities,
protection of right and full participation) Bill, 1995. It deals with preventive and
promotional aspects of rehabilitation.
The Children Act, 1960, provides for the care, protection, maintenance, welfare,
education and rehabilitation of socially handicapped children.
The following National Institutes are working for the specific disabilities to
provide care and welfare services in various aspects of the handicapped.
National Institute for Orthopedically Handicapped, Bonhooghly, Kolkata
National Institute for Mentally Handicapped, Secunderabad
National Institute for the Visually Handicapped, New Delhi and Dehradun
Ali Yavar Jung National Institute for the Hearing Handicapped, Mumbai
National Institute for Rehabilitation Training and Research, Cuttack.
Rehabilitation of the handicapped aims at training and retraining of the individual
to the highest possible level of functional ability through combined and
coordinated use of medical, social, educational and vocational measures. The
eventual goal is to reduce the fallout of disabling and handicapping conditions,
enabling the individual to actively participate in the mainstream of the community,
the so-called social integration’. The process of rehabilitation involves restoration
of function (medical rehabilitation), restoration of capacity to earn livelihood
(vocational rehabilitation), restoration of the family and social relationship (soda l
rehabilitation) and restoration of personal dignity and confidence (psychological
rehabilitation). Naturally, a multitudes of subdisciplines are required to participate
in this process, including physiotherapy, occupational therapy, speech therapy,
audiology, psychology, education, social work, vocational guidance and placement
services.
Services for the handicapped must incorporate therapeutics, education and social
and emotional support to the family. Nothing short of community participation will
make these services effective. The areas of community participation, include case
reporting and referral to rehabilitative services, raising funds for maintenance of
these services and advisory role for planning and administration. In addition, the
community should act as a ‘pressure group’ for promoting social legislation for the

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disabled. The community needs to offer employment opportunities in shops
factories and other business establishments to the disabled.
Central to all welfare programs is awareness creation in the society about the
abilities of a child with a handicap. There are many myths about the handicapped.
IX.NATIONAL WELFARE SERVICES FOR HANDICAPS
The following institutes are set up by the Government of India as premier institutes
in their respective fields to cater to the needs of the handicapped in the area of
education, development of manpower, training, vocational guidance, counseling,
research, development of suitable service models and low-cost aids and appliances:
a. National Institute for Orthopedically Handicapped, Kolkata.
b. National Institute for Mentally Handicapped, Hyderabad.
c. Ali Yavar Jung National lnstitute for the Hearing Handicapped, Mumbai.
d. National Institute for the Visually Handicapped, New Delhi.
e. Institute for the Physically Handicapped, New Delhi.
f. National Institute for Rehabilitation Training and Research, Cuttack.
Management of handicapped children requires multidisciplinary approach. Early
diagnosis and treatment of the particular cause of handicapping condition along
with disability limitation and rehabilitation should be promoted. The aim of
management is to safeguard against or halt the progression of the disease process
from impairment to disability and handicap. The approaches of management
should include the following aspects:
 Careful history, thorough physical examination and necessary investigations
for early detection of handicapped conditions are important
 Regular medical supervision and developmental assessment help to identify
the abnormal condition early in initial stage by maternal and child health
(MCH) or school health services
 Treatment of particular handicapped condition by medical or surgical
management eg. cataract, otitis media, leprosy, accidental injury, rickets,
congenital amomalies, etc.
 Correction of deformity, e.g. visual or hearing problems by spectacles or
hearing aids
 Physiotherapy and exercise to improve physical conditions
 Occupational therapy according to the child’s ability and that should be
provided with music, painting, weaving, woodwork, pottery, etc.
 Speech therapy to improve communication ability

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 Prosthetics, e.g. provision of artificial limb in a child with amputed leg
 Special care for mentally handicapped children with love, warmth, patience,
tolerance, discipline and avoidance of criticism
 Counseling and guidance to the parents and family members for
continuation of care of the children with emotional, educational and social
support
 Referral for welfare services (Government NGOs) for assistance of aids and
appliances, for special training and education, rehabilitation and support
services like pension, scholarship, special allowances, etc.
X.NURSING MANAGEMENT OF PHYSICALLY HANDICAPED CHILD
 Nursing personnel play a vital role to assist the family members to cope with
the crisis situation for the handicapped condition. Planning and providing
care to the handicapped children (especially physically and mentally
handicapped) in health care institutions and community are important
nursing responsibilities, including parental involvement and community
participation.
 Assisting the family to strengthen effective relationship and bondage to
prevent children from becoming socially handicapped. Nurses are
responsible for creation of awareness in the society about the prevention of
handicaps, the abilities of child with a handicap condition and the
potentialities present in him/her.
 Nursing care for the physically and mentally handicapped children in
hospital and home should emphasize on the following aspects.
Adolescent Health Transition Project recommends
 By age 14, ensure that a transition plan is initiated and that the
individualized education plan (IEP) reflects post high school plans
 By age 17, explore health care financing for young if needed, notify
the local division of vocational rehabilitation by the autumn before
the teen is to graduate from high school of the impending transition.
Initiate guardianship procedures, if appropriate
 Notify the teen that all rights transfer to him or her at the age of
majority. Check the teens eligibility for Supplemental Security
Income (SSI) the month, the child turns 18. Determine if the child is
eligible for SSI work incentives
 The youth is attending college, contact the college campus student
disability service program

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 By age 21, ensure that the young adult has registered with the
Division of Developmental Disabilities for adult services, if
applicable.
Prior to moving to adult care (with an adult medical specialist), ensure that the
adolescent understands the treatment rationale, symptoms of worsening condition
and in particular danger signs. Teach the adolescent about when to seek help from
a health professional. Introduce the teen to the medical insurance process. At
transition, coordinate a seamless transfer by providing a detailed written plan to the
care coordinator or advanced practice nurse ( after verbal collaboration).
After the transition, serve as a consultant to the adult office in relation to the teens
needs. Consult with a transition services coordinator or other service agency as
available in the local community.
X.CHILDREN WITH CEREBRAL PALSY
Introduction
Cerebral palsy (CP) is a form of chronic motor disability which is non-progressive,
non-fatal and yet incurable and results from damage to the growing brain before or
during birth or in postnatal period. It is the most common cause crippling in
children. 1hough mental retardation is associated in about 25 to 50% cases of CP, it
is, by no means, an essential feature of the clinical picture. The other handicaps
that the patient may have are epilepsy, orthopedic deformities, partial or complete
deafness and blindness, psychologic disturbances. etc. Cerebral palsy is a common
cause of childhood disability. According to conservative estimates, prevalence rate
of CP is in the vicinity of 4 per 1,000 live births. Since mild caiesare likely to be
missed in surveys, the prevalence of CP may well be higher than this estimate.

Definition
It is defined as ·a group of non-progressive, but often changing motor impairment
syndrome, secondary to lesions or anomalies of brain arising in early stages of its
development.
Etiology
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1. Genetic and chromosomal factors do not operate here.
2. Among the postnatal factors, hypothyroidism cultural influences and PEM
have nothing to do in the etiology of CP, Cerebral anoxia, often
accompanied by intraventricular and subependymal hemorrhages followed
by Physical birth trauma to the brain, kernicterus and congenital
malformations of brain was believed to account for a large chunk of cases of
CP.
3. Birth asphyxia, earlier believed to be a leading cause of CP, is, in fact an
uncommon etiologic factor in this entity. Current thinking is that roots of
pathogenesis of CP may well be in the developmental biology.
4. Adverse intrauterine factors like developmental malformations of brain and
intrauterine infections account for some cases. Significant perinatal damage
has been reported in 8 to 10 percent of cases. Genetic factors contribute in
about 2 percent cases. Although birth asphyxia was earlier considered as an
important cause of CP, it is now suggested that asphyxia may be a
consequence rather than cause of the processes that lead to CP.
5. Preterm birth is a major etiological factor. The underlying pathological
lesions in these babies are periventricular leukomalacia (PVL) and
periventricular hemorrhagic venous infarction (PINI). Ultrasonographic
detection of hypoechoic periventricular areas has been found to be a strong
predictor of later development of motor dysfunction in these preterm babies.
6. In majority of the cases of CP, the cause is unknown. Some important causes
of acquired CP, include CNS infections viz. meningoencephalitis,
hyperbilirubinemia, cerebrovascular accident and head trauma.
Pathophysiology
As CP is an umbrella term used for a wide variety of conditions, the pathology
accordingly varies widely. Some correlations, however exists with the type of CP.
PVL is characteristically seen in preterms with spastic diplegia. Cerebral injury in
the region of the middle cerebral is frequent in hemiplegic CP indicating antenatal
hypoperfusion. Children with spastic quadriplegia, secondary to severe hypoxic
ischemic events, often have multicystic encephalomalacia and cortical/subcortical
atrophy. Bilirubin of basal ganglia is seen in dyskinetic CP secondary to
kernicterus. Cerebellar lesions are found in hypotonic and CP. Developmental
malformations may be found in any type of CP.
Classifications of CP

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I. Classification based on motor deficit and distribution of handicap
i. Spastic CP (pyramidal CP): Spastic cerebral palsy is the type most
frequently encountered in clinical practice. The classical form of
spasticity of both upper, as well as lower limbs, legs being more severely
affected than the arms (diplegia rather than quadriplegia). In some case,
the picture may be that of hemiplegia, monoplegia or triplegia.
ii. Extrapyramidal CP: Besides spasticity, deep tendon reflexes are brisk
and ankle clonus may be positive. Also, plantars may be extensor. Sudden
lifting of the child may produce visible adductor spasm and even
“crossing of the legs” the so-called scissoring, which is characteristic of
CP.
iii. Atonic CP ( cerebellar CP): Cerebral palsy of this type can be
diagnosed fairly early in infancy. Delay in attaining motor milestones and
persistence Moro, grasp, tonic neck and other primitive reflexes after the
age of 3 months should arouse suspicion.
iv. Mixed CP: This is the combination all other classifications. In this type
child may show all other symptoms of CP.
II.Classification based on patient’s status about functional capacity
Class I: No practical limitation of activity
Class II: Slight to moderate limitation of activity.
Class III: Moderate to gross limitation of activity.
Class IV: Inability to carryon any useful physical activity.
III.Classification based on patient’s status about therapeutic needs
Class I: Not requiring any treatment.
Class II: Requiring minimal bracing and minimal therapy.
Class III: Requiring bracing and services of a cerebral palsy team.
Class IV: Requiring long-term institutionalization and treatment.
Clinical features
Cerebral palsy can be subdivided into several types based on predominant
motor pattern. Classification based on physiological characteristics (qualitative)
and extent of involvement or topography of motor deficits (quantitative).

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1. Spastic Cerebral Palsy: Cerebral palsy is the most common form and
accounts for 70% to 75% percent of cases. It is characterized by upper motor
neuron signs, viz. clasp knife hypertonia, exaggerated deep tendon reflexes
and extensor plantar responses.
2. Spastic Quadriplegia: Spastic quadriplegia patients are severely disabled.
All four limbs are affected with upper limbs being equally or more affected
than lower limbs. Majority of the patients have microcephaly, severe mental
retardation, pseudobulbar palsies, growth failure, visual and hearing deficits
and often epilepsy. Hypertonicity leading to arching of the back and
scissoring of legs is frequently seen. Hip subluxation or dislocation may
occur because of severe spasticity. Walking is markedly delayed and
generally the child has toe walking, because of tendo-Achilles tightening.
Arms are internally rotated, elbows extended or lightly flexed and hands
fisted. Later flexion contractures develop at ankles, knees and elbows.
3. Spastic Diplegia: the lower limbs are involved more than upper limbs.
Intellectual involvement is minimal. Growth of lower limbs may suffer,
whereas upper torso grows normally. It is characteristically seen in preterm
babies with PVL.
4. Spastic Hemiplegia: Spastic hemiplegia refers to involvement of one side
of the body. The arm is usually more severely affected than the leg; For
reasons not clear, right sided involvement is more frequent than left. Milder
cases are often missed by the parents and even by the doctors.
5. Dyskinetic Cerebral Palsy: Dyskinetic cerebral palsy includes the dystonic
and choreoathetoid fonns. The child has severe motor disability, with
persistent neonatal reflexes. Asymmetric tonic 11.. eek response (ATNR) is
prominent and postural reflexes appear late. Infants are usually hypotonic
with marked head lag, drooling of saliva and feeding difficulties. Athetosis
generally manifests after 1 Year of age. Flaying of fingers, overflow
movements and facial grimacing are prominent. These are exaggerated with
intention and emotion. Standing and walking are delayed. Intelligence is
often preserved, but because of severe physical and communicative
disabilities, children may appear to have mental retardation.
6. Ataxic Cerebral Palsy: Ataxic cerebral palsy is an uncommon form of CP.
These infants are hypotonic and inactive. Walking is delayed. The gait is
ataxic and wide-based. Cerebellar signs are present, nystagmus is, however,
rare. Ataxia may also be associated with spasticity (ataxic diplegia).

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7. Hypotonic Cerebral Palsy: Hypotonic CP is extremely rare. In most cases,
it may represent an evolving form of dyskinetic or spastic CP. Other causes
of hypotonia should be excluded.
8. CNS: Variable degree of mental retardation; behavioral problems and
seizures
9. Eyes: squint retinopathy of prematurity (ROP)-cataract, coloboma-
refractive errors and perceptual errors, blindness (partial or complete).
10. Ears: : Deafness (partial or complete )-receptive auditory aphasia
11. Speech: Aphasia-dyslalia and dysarthria
12. Sensory: spatial disorientation-astereognosis
13. Gastro intestinal tract: Constipation-incontinence
14. Teeth: malocclusion, caries
15. Miscellaneous: Feeding difficulties-drooling and recurrent infections.
Assessment and diagnosis
A detailed history and physical examination with special reference to neurological
and developmental status, language and learning disability, hearing and visual
function evaluation and psychometric and sensory deficit is vital. Attempts must be
made to rule out muscular dystrophy, degenerative disease or spinal cord tumor.
In order to localize the site and extent of the structural lesions or accompanied
congenital malformations, electroencephalography (EEG) and computerized
tomography (CT) scan may be done.
1he diagnosis of CP is essentially clinical. A detailed prenatal, natal and postnatal
history and a careful physical and neurodevelopmental examination is needed. In
severe and long-standing cases, the diagnosis of CP is not difficult. Early diagnosis
during evolving stages and diagnosis of cases required experience. Repeated
examinations over a period of time may be required to ascertain the non·
progressive nature of the disorder and to exclude slowly the progressive
neurodegenerative disorders. Neuromuscular, spinal disorders and other causes
need to be excluded in children with dyskinetic, hypotonic and ataxic forms of CP.
The clinical pattern of CP evolves over a period of time. A hypotonic child may be
found to have spasticity or dystonia on follow-up.
Some observations and signs that we have found useful for prediction and early
identification of CP are:
 Decreased spontaneous motility
 Stereotyped abnormal movements
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 Constant fisting after 2 months of age
 Reduced head circumference or fall in its growth
 Delayed social smile
 Excessive extensor tone, dystonia
 Primitive reflexes persisting beyond 6 months
 Persistent ATNR
 Delayed appearance of postural reflexes and developmental milestones
 Persistent asymmetry in posture, movement and reflexes
 Associated signs like roving eyes, no visual following, nystagmus,
persistent squint and lack of auditory response.
Investigations
In preterm infants, ultrasound is useful for picking up PVL and PHVI. The extent
of these lesions correlates with the prognosis. In straight forward established cases
of CP, investigations not generally needed for making a diagnosis. When the
etiological factors are not clear, neuroimaging or other genetic or metabolic tests
may be required to identify the underlying etiopathological mechanisms and to rule
out any progressive neurological disease which may in the beginning appear as
static encephalopathy.
Management of child with Cerebral Palsy
1. Physiotherapy
Physiotherapy is used to promote normal movement patterns, inhibiting the
abnormal ones and prevent contractures and deformities. Several methods have
been used, but there evidence to support the superiority of one over the other.
Popular. An individualized approach suitable to the child’s needs should be used.
Physiotherapy forms the cornerstone of management of CP. The subject is trained
in relaxing the spastic muscles, encouraged to do active exercise to establish
movement pattern and taught rhythmic contractions and relaxation muscles. For
assisting them to stand and walk, walking calipers are prescribed. In order to
maintain the proper sleep posture (knee, foot and hand), night splints are used.
Occupational therapy involves the positive application of certain repetitive
movements of legs, hands and fingers to relax the spastic muscles. They are also
trained for some occupation when they grow up, so that they turn out to be
economically self-sufficient.

[17]
An-occupational therapist trains the child for daily activities like feeding, bathing,
dressing, toilet training, etc. the activity is broken into its components and these are
taught one by one in the required sequence. Training for sensory-perceptual-motor
coordination is also provided.
2. Speech Therapy: Children with problems in speech and hearing require the
services of an audiologist and a speech therapist. A home-based management
program in which parents are taught the correct method of handling lifting
the child and carrying out specific exercises, is emphasized. Multisensory
stimulation is provided through peg board, blocks, toys, etc. to enhance
coordination and sensory-perceptual integration. These techniques are
incorporated into the pattern of daily life of the family.
In addition to therapies, some children with CP also require adaptive
and mobility devices like standing frames, walkers, tricycles and
wheelchairs. Simple low-cost aids can made available indigenously,
according to the child’s needs. Occasionally splints, casts and calipers may
be required to maintain normal postures and to prevent deformity.
SURGICAL MANAGEMENT
Neurosurgical procedure of selective dorsal rhizotomy (in which dorsal rootlets
from L2 to S2 levels are selectively cut), is useful in some children with
predominant lower limb spasticity.
Surgical/orthopedic therapy is targeted at correcting the deformities and stabilizing
the joints.
Gratifying results have been obtained by the procedure, selective posterior
rhizotomy, in children with spastic CP involving primarily the lower limbs. In this
surgical procedure, posterior rootlets of the cauda equine are stimulated
electrically, whereas abnormal ones are sectioned. Rehabilitative therapy needs to
be continued to compliment the positive outcome of the surgery.
MANAGEMENT OF ASSOCIATED PROBLEMS
Various members of the team are involved in the management of associated
problems. The clinical psychologist help with management of behavior problems
using behavior modification techniques, psychotherapy, family counseling, etc.
The audiologist and ENT specialist takes care of hearing and speech problems by
providing hearing aids. The ophthalmologist provides remedies for visual problems
corrective glasses, squint surgery, etc.
[18]
1. Drugs: Anticonvulsant drugs are required for control of seizures, which are
of various types and frequently difficult to control. Selection of an
appropriate anticonvulsant drug is important.Other drugs include L-dopa and
trihexyphenidylfor severe extrapyramidal sympnsneelphenidate for
hyperactivity and aggressive behavior and atropine or benztropine for
sialorrhea, antireflux drugs of gastroesophageal reflux used on an individual
basis. There is role for so-called brain tonics.
The major aim of treatment in cerebral palsy is to achieve maximum
possible functional ability and skill in keeping with his developmental age.
This is primarily achieved through physiotherapy, surgical corrections and
occupational therapy. Spasticity may warrant use of drug therapy with
diazepam, dantrolene sodium or baclofen, hypotonia with strychnine,
athetosis with chlordiazepoxide or levodopa, dystonia with carbamazepine
or trihexyphenidyl and epilepsy with anticonvulsants.
2. Prevention: Better obstetric and neonatal care prevents birth trauma,
asphyxia and neonatal jaundice and thus, much of CP. It has recently been
suggested that future developments targeted at enhancing perinatal care may
have only marginal effect on the prevalence of CP. It may be worth-while to
direct research to the area of developmental biology as well. Early and
prompt detection of CP cases and adequate planning for management may
help indirectly by reducing residual neurologic, psychosocial and other
handicaps and making child’s life comfortable.
3. Parental Counseling: Interaction of the health care provider with the
parents is very important. Ongoing efforts are needed to ensure parental
acceptance of the problem and their participation in prolonged management
programs. Considerable understanding and insight are required for proper
counseling. Simple and honest explanations with emphasis on the positive
aspects of the child should be provided. Parents also need to be explained
about long-term treatment, along with practical short-term goals. It is also
important to help remove the feeling of guilt and instill positive attitudes. As
the child grows older, he or she needs appropriate schooling or special
training according to his or her abilities. Guidance to the parents should be
provided on these issues. The ultimate goal of management is to help the
child to achieve his or her optimal developmental potential and to integrate
him or her as a functional member in the society.
XI. MENTALLY CHALLENGED CHILD

[19]
Introduction
Mental retardation refers to a functional state in which significant limitations in
intellectual status and adaptive behavior (functioning in daily life) develop before
the age of 18 years. Up to 3 percent of the population may be designated as
mentally retarded. The term ‘mental retardation’ and the more acceptable ,phrases
such as ‘intellectual disability”, learning difficulty, mental subnormality refer to a
significantly subaverage mental development from birth or early childhood. To use
the term as a symptom and not a diagnostic entity, as the condition does not relate
to a single cause, but indicates a deficiency or lag in cognitive development, along
with or deviant patterns in other streams of development and adaptive behavior.
Toe condition represents a lifelong impairment, with the persons affected showing
diminished intellectual capacity throughout their lives.
Definition
1. Mental retardation is defined as significantly subaverage general
intelligence, with onset during early developmental period and concurrent
deficits in adaptive functioning.
2. It is defined as the Coexisting deficits in at least two adaptive skills:
communication, community use, functional academics, health and safety,
home living, leisure, self-care, self direction, social skills and work
Classification
There is no completely satisfactory classification that can encompass the wide
spectrum of presentation of MR. The pitfalls in the assessment of IQ in a young
child are many and developmental pediatricians and behavioral scientists prefer to
use the related and more appropriate measures of developmental quotient (DQ) or
the social quotient (SQ) in which importance is given to the acquisition of socially
relevant skills.
4 categories of intellectual disability based on IQ levels are
1. IQ levels 70 to 85 are considered borderline
2. mild mental retardation with 1Q range of 50-70
3. severe mental retardation with an IQ below 20-34
4. profound mental retardation below 20
Pathophysiology

[20]
Prenatal errors in central nervous system development may be responsible or an
insult or damage to the brain may occur in the prenatal, perinatal or postnatal
period from a variety of causes. Motor problems such as hypotonia, tremor, ataxia
or clumsiness, visual motor problems or other issues may occur concomitantly
with MR. When a learning disability or sensory processing impairment is also
present, functioning at a higher intellectual level may be prevented.
With evidence supporting the knowledge that even those with severe mental
retardation can become at least partly independent in looking after themselves
through early intervention, special education, loving care, supervision training,
care providers are averse to accepting the older functional classification with the
categories of untrainable, trainable, educable and slow learner.
Epidemiology
Mental retardation is the second most common neurodevelopmental disability in
children. The prevailing controversies regarding terminology, difficulties in
ascertainment due to a misinterpretation of definition and underreporting due to the
stigma attached to the label in many parts of the world not withstanding most
available estimates suggest that there will be about 3 percent of cases with MR.
A large population study in 2 to 9-year-old Bangladeshi children found an age-
specific prevalence of 2 percent. Other age-specific studies report an increasing
prevalence from the pre-school years to adolescence, perhaps due to additional
acquired causes such as trauma, infection. The relative risk increases with
decreasing socioeconomic status. A large community based study in Pune, India,
reported a 29 percent lowbirth-weight (LBW) incidence and identified, among
other population attributable risk factors, malnutrition of pregnant mother
adolescent girls as an important determinant.

Etiology
Tue symptom-complex of MR does not relate to a specific cause and is often
attributable to multifactorial genetic and environmental factors. Anything that
damages and interferes with the growth and maturation of the brain can lead to
MR.
Catogory Type examples
[21]
Prenatal (causes before Chromosomal disorders Down syndrome, Fragile
birth) X syndrome, Prader-Willi
syndrome, Klinefelter
syndrome
Single gene disorders Inborn errors of
metabolism-galactosemia,
phenylketonuria,
mucopolysaccharidoses,
hypothyroidism, Tay-
Sachs disease
Neurocutaneous
syndromes-tuberous
sclerosis,
neurofibromatosis.
Brain malformations-
genetic microcephaly,
hydrocephalus,
myelomeningocele
Other dysmorphic
syndromes-Laurence-
Moon-Biedl syndrome
Other conditions of Rubinstein taybi
genetic origin syndrome
De Lange syndrome
Adverse maternal / Deficiencies-iodine
environmental influences deficiency and folk acid
deficiency
Severe malnutrition, in
pregnancy
Substance abuse-alcohol
(maternal alcohol
syndrome), nicotine and
cocaine during early
pregnancy
Exposure to other harmful
chemicals such as
pollutants, heavy metals,
abortifacients and harmful
medications such as
thalidomide, phenytoin
[22]
and warfarin sodium in
early pregnancy
Maternal infections-
rubella, syphilis,
toxoplasmosis,
cytomegalovirus and
human immunodeficiency
syndrome (HIV)
Others-excessive
exposure to radiation and
rhesus (Rh)
incompatibility
Perinatal (around the time Third trimester (late Complications of
of birth) pregnancy) pregnancy
Diseases in mother-heart
and kidney disease and
diabetes
Placental dysfunction
Labor (during delivery) Severe prematurity, very
low-birth-weight, birth
asphyxia
Difficult and/or
complicated delivery
Birth trauma
Neonatal (first four weeks Septicemia, severe
of life) jaundice, hypoglycemia
Postnatal (infancy and Brain infections-
childhood) tuberculosis, Japanese
encephalitis and bacterial
meningitis, head injury
Chronic lead exposure
Severe and prolonged
malnutrition
Gross understimulation

Neuropathology
There are no specific neuropathologic correlates of MR. A variety of changes
reflect the heterogeneous nature of the disorder. They include:

[23]
 Malformation syndromes from failure of induction of mesoderm and
neuroectodem
 Disorders of cell migration, proliferation and differentiation, dendritic
arborization
 Postnatal destructive changes secondary to metabolic insult, infection or
trauma
 At times the gross accompanying changes may be obvious as in
lissencephaly, holoprosencephaly, etc.
 In a majority, no significant structural changes can be demonstrated
 Postmortem studies using special techniques such as electron microscopy or
Golgi method may reveal abnormal synaptic development and dendritic
arborization in a few.
Clinical Features
There is no uniform clinical feature as mental retardation is a symptom or a
disability associated with a variety of conditions as mentioned above. Expected
clinical features include
 Microcephaly or occipitofrontal circumference 2 standard deviation (SD)
below the mean
 MR of prenatal causes may be associated with some of these findings on
examination, viz. growth retardation, cataract, skeletal anomalies,
multisystem involvement (congenital heart disease, seizures,
hepatosplenomegaly etc.
 Muscle weakness or hypotonia, craniofacial features, hearing loss, focal
neurologic abnormalities and behavioral alterations are common in both
prenatal and postnatal insults
 A family history of miscarriages or learning difficulties in affected family
members may be elicited in some children with mental handicap associated
with X-linked disorders and autosomal dominant disorders ( e.g.
neurocutaneous syndromes, fragile X syndrome).
Assessment and Diagnosis
Establishing an accurate etiological diagnosis is not always possible, nevertheless
the diagnostic process is absolutely necessary for accurate genetic counseling and
rehabilitative planning. Quite often, a detailed developmental history including
prenatal, perinatal, neonatal history and developmental patterns during early
infancy may be suggestive of diagnosis. In an older, school-going child, scholastic

[24]
performance and learning behaviors must be enquired about. A history of
consanguinity, family history of similar problems and contributory illness provide
clues to the diagnosis.
History
A meticulous history should include Reasons for parental concern (delayed speech,
poor mobility, bizarre behavior, etc.), Maternal illnesses, obstetric characteristics,
Status of the infant at delivery and the clinical course in hospital, Milestones of
development in the fine motor, gross motor, personal, social, language and
cognitive areas, evidence of regression and recent patterns of dissociated
development, Self-help capability and activities of daily living (ADL) such as
feeding, toileting, Behavior.
Clinical Evaluation
a. General physical examination and a standard developmental screening
inventory is a prerequisite to further diagnostic developmental evaluation
b. One or more standard developmental scales such as infant scales, Gesell’s
developmental schedules, Vineland maturity scales, Wechsler Intelligence
Scale for Children (WISC) and Goodenough Draw-a-man test, coupled with
psychological testing may not only help to diagnostic formulation in terms
of maturation and development (IQ/DQ), but also give the levels of function
and adaptation. This evaluation also forms the basis for the special education
needs as well as indicates the child’s social and vocational adequacy to plan
effective management.
c. Associated impairments such as visual, auditory problems and seizures may
require careful evaluation.

Investigations
Investigations are generally prescribed to elicit etiological diagnosis. There is a
limited role for investigations beyond infancy. The first contact work-up should
ideally include testing for specific conditions, e.g. T4, thyroid-stimulating
hormone (TSH) (hypothyroidism), toxoplasma, rubella, cytomegalovirus herpes
simplex virus (TORCH) antibodies, magnetic resonance imaging (MRI)/ CT
scan of brain, genetic and metabolic tests for conditions such as aminoacidemia,
chromosome studies (Down and other chromosomal disorders such as fragile
X,etc.).

[25]
Differential Diagnosis
 Child may, wherever possible, be referred to an experienced
neurodevelopmental pediatrician to confirm the diagnosis by ruling out
conditions such as autism, attention deficit and hyperactivity disorder
(ADHD) and specific learning disabilities (SLD) such as dyslexia.
 The pediatrician or the primary care physician should keep in mind the
fact that MR is not a mental illness
 The major characteristic of mental retardation is delay in cognitive
development and is present from childhood, whereas the major
characteristic of mental illness is disturbance in the mental functions of
thinking, feeling and behavior with onset later in life after a phase of
normal development.
Management of Child with Mental Retardation
The overall management consists of skill building and countering undesirable
behaviors. Behavioral management with a consistent approach should be adopted
with meaningful goals and meet the objectives of effective therapy and educational
programs. An individual rehabilitative program is best developed in an
interdisciplinary staffing conference involving parents, clinical psychologists,
social workers, occupational therapists, speech pathologists and pediatricians.
However, children in resource-pool settings may benefit from community-based
and family-centric management with the key care provider approach, which is also
cost-effective and sustainable in the developing world.
Prevention
Prevention at the primary level is possible by efforts to reduce the contributory
illness and determinants of MR. Good prenatal services and obstetric care, good
nutrition and administering measles, mumps and rubella (MMR) vaccine to all
girls, fortification of food with iodine, iron, folic acid and general awareness
campaigns for promoting health seeking behaviors, as well as screening for early
identification, can go a long way in decreasing the prevalence of MR in children.
Therapeutic Management
The primary goal of therapeutic management of children with MR is to provide
appropriate educational experiences that allow the child to achieve a level of
functioning and self sufficiency needed for existence in the home, community,
work and leisure settings. The child’s conceptual, social, practical and intellectual

[26]
abilities will drive school placement and the focus of the educational experience.
The student’s success is also dependent upon community and family influences.
The majority of mentally retarded individuals require only minimal support and
these individuals are able to achieve some level of self-sufficiency. Only a few
children and adults with MR require extensive support.
Nursing Management
 Perform developmental screening at each health care visit to identify
developmental delays early. Elicit the health history, determining the mental
and adaptive capacities of the child’s parents and other family members.
Obtain a detailed pregnancy and birth history. Document sequence and age
of attainment of developmental milestones. Note history of motor, visual or
language difficulties. Assess the child’s health history for risk factors such as
preterm or post-term birth, LBW, birth injury, prenatal or neonatal infection,
prenatal alcohol or drug exposure, genetic syndrome, chromosomal
alteration, metabolic disease, exposure to toxins, head injury or other
trauma, nutritional deficiency, cerebral malformation and other brain disease
or mental health disorder. Note history of or concomitant seizure disorder,
orthopedic problems speech problems or vision or hearing.
 For the child with known MR, assess language, sensory and psychomotor
functioning. Determine the child’s ability to toilet dress and feed himself or
herself. Ask the parents about involvement with school and community
services and support.
 On physical examination note dysmorphic features consistent with certain
syndromes. Evaluate the newborn or metabolic screening results. CT MRI of
the head may be performed to evaluate the brain structure. Thyroid function
tests may be ordered to rule out thyroid problems leading to developmental
delay.
 It is important for the nurse to continue the child’s usual home routine.
Follow through with feeding and motor supports that the child uses. Ensure
that the child is closely supervised and remains free from harm. Allow
parents time to verbalize frustrations or rears. For some families, the
caretaking burden is extensive and lifelong; arrange for respite care as
available.
 Support the child’s strengths and assist the child and family to follow
through with therapy or treatment designed to enhance the child’s
functioning. Assist with the development e child’s IEP as appropriate.

[27]
 As medicine and scientific technology have advanced, the number of
children surviving with health problems at require long-term interventions
has increased significantly. Children are now living with conditions that
require high-tech treatments for survival. Children with special health care
needs as those who have or are at risk for a chronic physical, developmental,
behavioral or emotional condition beyond needs generally required by
children.
 In addition to the direct effects of their special needs, these children and
their families are often inadequately insured; have financial needs, have
unmet family support needs or have difficulty obtaining the specialty care
that the child requires. Children with special health care needs generally
require more intensive and diverse health services, as well as coordination of
those services, than do typical children. It can be challenging for family of a
child with special needs to navigate the system and obtain all of the services
their child requires.

XII. SUMMARY
Disability refers to an inability to carry out certain activities considered normal for
the individual’s age, sex, etc. as a result of impairment. The sequence of events
leading to a handicap includes insult (injury or disease) then impairment then
disability and finally handicap (win). Handicapped children refers to those with
presence of an impairment or other circumstances, those are likely to interfere with
normal growth and development or with the capacity to learn. Primary handicap
condition leads to secondary handicap conditions, e.g. blindness leads to
economical handicapped situation. The child may have single or multiple handicap
condition. Major causes of handicapped conditions in children re congenital

[28]
anomalies, genetic disorders, poliomyelitis and other communicable diseases,
perinatal conditions, malnutrition, accidental injury and sociocultural factors.
XIII. CONCLUSION
The term, handicap, refers to an inability to achieve the full potential or fulfill a
role that is normal for that individual as a result of disease, impairment or
disability. It is the effect of the conditions, e.g. inability to participate in
competitive sports like hockey, cricket or skating in post-polio lameness or social
isolation resulting from mental retardation, deaf-mutism or epilepsy. Disease on
the other hand, simply refers to a specific health problem like cleft palate, arthritis
or congenital heart disease. Impairment refers to any loss or abnormality of
psychological, physiological or anatomical structure or function like autism,
impaired vision or loss of a limb in an accident. Disability refers to an inability to
carry out certain activities considered normal for the individual’s age, sex, etc. as a
result of impairment.

XIV. BIBLIOGRAPHY
1. Basavanthappa BT. (2015). Child Health Nursing. 1st Edition. New Delhi.
Jaypee brothers publications; 867-886.
2. Ghai. O.P. The text book of Essential pediatrics. 7 th edition, CBS
publishes&distribbuters Pvt Ltd,23-41

[29]
3. Gupte Suraj. The text book of Short textbook of pediatries. 10th edition.
Jaypee publications, 31-61

4. Sharma Rimple .The text book of Essentials of pediatric Nursing. 2 nd


edition, Jaypee publication,49-71

5. Gupta Piyush. the text book of PG text book of pediatrics Volume 1.The
health science publisher, 701-736

6. Marlow. R. Dorothy, Reding A. Barbara, The text book of “Pediatric


Nursing: 6th edition saunders an infants of Esevier, 547-598

7. Yadav Manoj, The text book of “chld Health Nursing, 2013 edition PV
books publishers,69-132

8. Varghese Susamma, Susmitha Anupama. (2015). Text book of Pediatric


Nursing. 1st Edition. New Delhi: Jaypee publications,41-42

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