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Running head: CEREBRAL PALSY IN CHILDREN

Cerebral Palsy in Children


Lauren Katz
Loma Linda University
June 6th, 2016

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Abstract

Cerebral Palsy is a muscular disorder that affects millions of children a year. Most
children are diagnosed during infancy or preschool years by a brain scan, an
Electroencephalogram (EEG) and/or other laboratory tests. While there is no cure for this
disease, there are many types of physical therapy and medications that help with muscle stiffness
and movement. A family that is supporting a child with cerebral palsy can sometimes feel alone
and isolated, especially siblings. Many families also struggle with the financial burden of this
disease and as well as the grief that their child may never be normal. Because these stressors
are very common, there are many resources for families including websites and support groups.
Families are a childs main advocate so it is up to them to be a voice for their child and promote
their independence.

CEREBRAL PALSY IN CHILDREN

Cerebral Palsy in Children


Cerebral palsy (CP) is a chronic muscle condition that globally affects thousands of
children every year. A childs life is greatly affected by this diagnosis, for it can lead to lack of
mobility, speech and muscle control. Feelings of helplessness and lack of control over their own
lives can lead a child to having poor quality of life if not supported by their family unit. Families
who have a child with cerebral palsy can sometimes struggle with day-to-day life and are
required to exert a lot of emotional and physical energy to care for their child. With the help of a
multidisciplinary health team and a strong support system, families affected by CP can still lead
productive and fulfilling lives.
Explanation of Cerebral Palsy
Cerebral palsy is a disorder that occurs in a persons movement, muscle tone or posture
(Mayo Clinic Staff, 2016). It affects about 2 out of every 1000 children but the effects range in
severity (Lindsay, 2016). Signs of the disease are exhibited through stiff or floppy limbs and
trunk, exaggerated reflexes, abnormal posture, difficulty walking, and involuntary movements.
These side effects usually happen together and can include any combination (Mayo Clinic Staff,
2016). In addition to the listed symptoms, other effects occur such as excessive drooling or
difficulty swallowing, seizures, inability to perform precise motor motions, lack of coordination,
delays in speech development or difficulty talking or favoring one side of the body over another
(Mayo Clinic Staff, 2016). There are varying levels of the cerebral palsy and the abilities of a
person with this disability differ greatly. Some children are never able to walk, verbally
communicate or eat without assistance. Many times a child is bound to a wheelchair or may need
crutches or a walker to be mobile.

CEREBRAL PALSY IN CHILDREN

Pain and fatigue are often associated with this disease and it is difficult to manage.
Because children with cerebral palsy cannot control their muscle movements, they often tighten
up their bodies and put enormous strain on themselves. Pain was reported most commonly in the
hips, bladder, back and upper limbs (Hayles, Jones, Harvey, Plummer, & Ruston, 2015). While
the muscle rigidity usually does not worsen with age, if it is not treated early on, it could worsen
with time and cause even more discomfort (Mayo Clinic Staff, 2016). Some studies have
suggested that intense pain and pain anxiety could lead to social and behavioral problems for
children with cerebral palsy (Lindsay, 2016). Many families are not aware of these outcomes and
therefore are not able to address them.
While a child with CP may be physically limited, most of the time they are cognitively
developing and functioning at their age level (Lindsay, 2016). Many times children with cerebral
palsy are dismissed in the school setting due to their physical appearance when in reality they are
able to understand content just like any other child. Incorporating a child with this disease into
school funtions can be difficult because they require so much one-on-one attention. Some
children are not able to even hold a pencil or may need special supports to help them perform
basic motor functions. Many of these child are often not included in activities in and out of
school, which leads to a low quality of life and lack of stimulation (Hayles, Jones, Harvey,
Plummer, & Ruston, 2015). Some children who are not actively receiving support are bullied and
left out of social circles. This can lead to depression and extreme unhappiness as well as
isolation. So many of these children long to be normal but are not supported by their peers or
family so they miss out on many life events (Hayles, Jones, Harvey, Plummer, & Ruston, 2015).
Children with these special needs require a strong advocate and many times caregivers are
unable to do so due to lack of support and information regarding cerebral palsy.

CEREBRAL PALSY IN CHILDREN

One of the most common struggles a child with cerebral palsy faces, is nutrition. This is
attributed to the difficulty in swallowing and sucking. As an infant, one of the first signs that an
infant may have cerebral palsy is that they are unable to breast feed due to their inability to suck
(E. Schwab, personal communication, May 8, 2016). Children with cerebral palsy are at a greater
risk than the general population in regards to being overweight or underweight (Vieira Pinto et
al., 2016). This is often due to the fact that many children with cerebral palsy are sedentary due
to their physical condition and are not able to be physically active or are not stimulated
physically by their caregivers. It is recommended that children have moderate-to-vigorous
physical activity for 90 minutes a day (Ryan, Forde, Hussey, & Gormley, 2015). It has been
found that children with CP are more sedentary than children who do not have CP. This lack of
physical activity can lead to other health problems such as high blood pressure and metabolic
dysfuntion (Ryan, Forde, Hussey, & Gormley, 2015). Many caregivers do not realize that a child
with cerebral palsy needs to participate in daily physical activity just like any other normally
developing child so in turn, the child with cerebral palsy suffers. It was found in a study that
children who were identified as having spastic (stiff muscles and exaggerated reflexes) side
effects struggled more with oral functioning. This was due to having difficulties cooperating with
caregiver who was feeding them or they did not understand the reproducibility of movements
involved with feeding (Vieira Pinto et al., 2016). As a result, children with better oral facial
functional performance were able to gain and regualte their weight more easily because they
were able to feed with more ease.

CEREBRAL PALSY IN CHILDREN

Diagnosis and Treatment


Common Diagnostic Tests
It is very difficult to quickly diagnosis a child with cerebral palsy because the diseases
symptoms mirror those of many other common diseases and disorders. Many health providers
are not fully aware of the early indicators of cerebral palsy, which makes early identification
very difficult (Hubermann, Boychuck, Shevell, & Majnemer, 2016). A child must be observed
over time, beginning in infancy and then they will usually be diagnosed in the toddler or
preschool years (Hubermann, Boychuck, Shevell, & Majnemer, 2016). Brain scans are
commonly used to see if there is damage or abnormal development in a childs brain (Mayo
Clinic Staff, 2016). These tests include magnetic resonance imaging (MRI), cranial ultrasounds
and computerized tomography (CT) scans (Mayo Clinic Staff, 2016). If a child is experiencing
seizures (very common in children with cerebral palsy), another test that can be utilized is an
electroencephalogram (EEG). This will measure the electrical activity in a childs brain and can
lead to the diagnosis of epilepsy, which can be a sign that a child has CP (Mayo Clinic Staff,
2016). In addition to the listed tests, a child can also be assessed on by specialists to identify
other impairments that are associated with CP. These include vision, hearing, speech, intellectual
disabilities, developmental delays and movement disorders (Mayo Clinic Staff, 2016).
Specific Treatments
There is no cure for cerebral palsy but there are many treatments and therapies that can
provide comfort and quality of life for children with the disease. A child can participate in
physical, occupational, speech and language, and recreational therapies that can improve
functional abilities such as walking, talking, swallowing and emotional well-being (Mayo Clinic
Staff, 2016). There are also surgical procedures that may help to decrease muscle tightness or

CEREBRAL PALSY IN CHILDREN

bone abnormalities that are a result of spasticity. Orthopedic surgery can make short muscles
longer and decrease pain as well as make it easier to use a walker or crutches (Mayo Clinic Staff,
2016). A surgeon can also sever nerves, which will reduce pain and relax the muscles.
Unfortunately, this can cause numbness so it is only utilized in severe cases (Mayo Clinic Staff,
2016).
A common recreational therapeutic technique that is used is hippotherapy or therapeutic
horseback riding, which involves using the movement of riding a horse or the environment to
meet specific therapeutic goals (Angsupaisal et al., 2015). These sessions are usually one-on-one
between a therapist and a child with CP and it has been shown to help a child improve their
posture, gross motor skills and overall mental state (Angsupaisal et al., 2015). This theraputic
practice helps children to gain independence and control over their body while doing an activity
that is enjoyable. Another type of this therapy is called adaptive riding. This is defined as
horseback riding that is adapted for people with disabilities (Angsupaisal et al., 2015). It is
usually done in groups and is more of a recreational activity. Therapists provide minimal
guidance in order to provide a child more independence. Both types of therapy are proven to be
successful and can be utilized depending on a childs abilities (Angsupaisal et al., 2015).
Psychosocial Issues
Family Stressors
Because many children with cerebral palsy are not able to walk, they become reliant on
caregivers to help them in their everyday lives. Independence is difficult to achieve because they
are unable to regulate their bodily functions such as going to the bathroom and feeding
themselves. This can put a large amount of stress on families because they are responsible for
helping their child complete these everyday tasks. Many families do not have the support of their

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relatives and friends so it makes it very difficult for them to incorporate their child with CP into
their lives outside of the home (Lindsay, 2016). It is emotionally and physcially exhausting for a
caregiver to take a child with cerebral palsy out of the home because most of the time they need
a device to help with walking and talking, which makes for extra work when transporting.
Children may need to be lifted in and out of the car and their wheelchair so going anywhere is a
task and takes multiple people to complete. Many families are unable to go on vacations because
their child with CP needs an array of medical equipment and supports to sustain life (Lindsay,
2016). This can cause sadness among caregivers and feelings of isolation.
Isolation of a caregiver can make a caregiver extremely unhappy and dissatisfied with
life. Sometimes a caregiver can blame this on their child with cerebral palsy, which can lead a
family to feel disconnected. While isolation can be brought on by inability to take a child out of
the home, it can also be brought on by a lack of acceptance within a persons community
(Lindsay, 2016). Cerebral palsy is a disorder that cannot be hidden and is very physically visible.
Outsiders may often stare or not understand a persons condition, which causes caregivers to feel
uncomfortable in public (E. Schwab, personal communication, May 8, 2016). This can lead to
poor quality of life for not only the caregiver but also the child with cerebral palsy. Families may
not include their child in outings and this is upsetting to the child (Lindsay, 2016). It was found
that children who were able to participate in events outside the home were more well-adjusted
and able to gain autonomy (Lindsay, 2016). Without the guidance of medical staff, families may
not be able to find a routine that works for them and thir child with special needs, which can lead
to devastating consequences.

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Financial Stressors
Having a child with cerebral palsy can be extremely costly for families and it is difficult
for many of these families to provide for their children with special needs. A child with CP not
only requires mobility devices but home modifications, adapted toys/leisure items, transport,
paid caregivers and equipment for bathing/dressing/toileting (Bourke-Taylor, Cotter, & Stephan,
2014). A study was done in Australia that evaluated the average costs for having a child with
cerebral palsy. It was found that a familiy pays an estimated 5.2 million dollars for a child with
CP (Bourke-Taylor, Cotter, & Stephan, 2014). In additon to this amount, caregiver must also pay
separately for technology and equipment that helps a child with CP participate in home and
school activites. Most families are not prepared for the financial burden of having a child with
cerebral palsy, which can lead to a high amount of stress. Families can be torn apart due to
financial struggles and it puts strain on their relationships with one another. Unfortunately, many
families cannot finacially provide for their children with cerebral palsy so the child with special
needs suffers. Without having special devices and technology, they cannot participate in many
activities in and out of the home (Bourke-Taylor, Cotter, & Stephan, 2014). This makes it
difficult not only for the child, but for the caregiver because their quality of life is very low. If a
family is not able to adapt their life for their child with special needs, they usually stay in the
home with the child which can lead to isolation and neither the caregiver or the child is able to
participate in life events.
Sibling Stressors
Siblings of children with cerebral palsy can face many challenges. They can sometimes
feel like they are not receiving the same amount of attention from their parents as their ill sibling
and as though they have to grow up quicker because they are exposed to such heartache at an

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early age. An interview was conducted with Eliana Schwab, whose brother, David was
diagnosed with cerebral palsy as a toddler and later died at 17 due to complications with
pneumonia. Eliana said that she was extremely close to David her entire life, despite him being
nonverbal and unable to walk. She stated that she was never involved with his caregiving
because her parents were in the medical field and they were also able to afford additional
caregivers (E. Schwab, personal communication, May 8, 2016). David was always included in
their family outings and her parents were constantly striving to improve his quality of life. Her
father would take him out of his wheelchair every night and cuddle with him and provide him
with physical attention (E. Schwab, personal communication, May 8, 2016). Many of her
extended family members did not support her parents in their efforts to maintain a normal
lifestyle because they did not understand why they would take this sick boy out of the home
(E. Schwab, personal communication, May 8, 2016). They believed that he was in some sort of
pain and that he should not be transported all over. Some family members did not understand
that his level of cognitive development was on track for his age because of his physical
appearance. It pained her to see people stare at him and think that he was stupid. People would
not speak directly to him and talk to her or her parents because they didnt think he could
understand what they were saying. She stated that the most difficult part of it all was when
people did not treat him like a human and wrote him off because he did not look like everyone
else (E. Schwab, personal communication, May 8, 2016).
Eliana said that she never thought much about David dying because she always believed
that people with cerebral palsy could lead long lives despite their disabilities. She was very
shocked when he passed and she felt cheated out of having a sibling for the rest of her life (E.
Schwab, personal communication, May 8, 2016). To this day, she wonders what life would be

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like if he were still alive and what modern technology could have done to help his condition. She
said that because of having a brother with a disability, she feels like she has more compassion
and empathy for others and has dedicated her life to providing early intervention to families with
disabled children (E. Schwab, personal communication, May 8, 2016). Eliana had always wished
that people would put the same value on David as they did her because she knew what his true
capabilities were. Now as she works with other families with disabled children, she knows that
they all members of a family are important and they should all be treated like so (E. Schwab,
personal communication, May 8, 2016).
Grief Surrounding Cerebral Palsy
Many families have to go through a grieving process when a child is diagnosed with
cerebral palsy. Families will have to come to terms with the fact that their child will not
necessarily develop like other children their age and they may never be able to do some things
that other children can. It is very difficult for families to accept that their lives will be different
because of their disabled child. Some people would view this as a negative but families who take
this challenge on and are positive, usually have better outcomes for their family.
One of the most difficult things for families to accept is that their child may never be
fully independent and will rely on caregivers to help them live their everyday life. A lot of times
the caregiver ends up being a parent or sibling and they can become very consumed with taking
care of the child with CP. Some caregivers may have to quit their job or give up leisure activities
in order to be there for the child with CP, which can be upsetting and further isolating for the
caregiver. It takes a massive amount of energy for a caregiver to give a child full quality of life
and it sometimes means that they have to sacrifice their own needs and desires for the sick child.

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Another issue that families have to address is facing the judgment and ridicule of society.
Some people are not aware of what cerebral palsy actually entails so they often stare and treat a
child with cerebral palsy differently. Unfortunately, society is not always accepting of people
who are different because they lack the understanding and knowledge as to why that person is
different. Caregivers will have be strong and confident in their abilities to care for a child when
they are out in public because there will always be people who do not understand the childs
illness. This makes a caregiver vulnerable to outside judgments and opinions on a daily basis,
which can become exhausting. If not addressed, a caregiver could become overworked and not
have a high quality of life.
Resources for Families
Support Groups
Support groups for siblings, parents and the child themselves can be utilized. For parents,
there is a group called Parent to Parent USA. This was a group founded by a mother whose
daughter has Down syndrome and she wanted to create a place for parents of disabled children to
come together and support one another (Parent to Parent USA, 2013). This is a program that
spans across the entire United States and is currently growing. Each group is led by a parent with
a child with a disability and they facilitate conversation among all of the group members (Parent
to Parent USA, 2013). It is helpful for parents to connect with other parents experiencing the
same challenges because they can understand each other on a level that a medical professional
cannot. The group gives confidence to parents that they can care for their child and allows them
to know that they are not alone. Attending this group can help parents to feel less isolated and be
around people that can relate to their day-to-day struggles (Parent to Parent USA, 2013).

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Siblings also need to be provided with support groups and one very commonly attended
is the Sibling Support Project. This group also spans throughout the United States and caters to
brothers and sisters of children with disabilities and health issues. Sibshops are available for
young children, teens and adults can come together to do different activities and share their
stories with other siblings who can relate to their struggles (Sibling Support Project, 2016). Many
times, caregivers do not realize that healthy siblings are greatly affected by their ill sibling and
therefore do not receive support. By attending a SibShop, a sibling can feel connected to others
and share their feelings and concerns (Sibling Support Project, 2016). When a child is able to be
open about their life and how having an ill sibling feels, they can have greater success in all
aspects of their lives.
Jacks Helping Hand is an organization in San Luis Obispo, California that provides
therapeutic activities and camps for children and families that are affected by an illness or
disability. One program in particular, is called Little Riders and it is an adaptive horseback riding
program for children with disabilities. This program caters to children with both physical and
cognitive disabilities and it is a way for children to socialize and feel confident (Little Riders,
2016). From horseback riding, children with cerebral palsy can improve their balance and
strength as well as their mobility (Little Riders, 2016). Many children with CP are not able to
participate in social environments so Little Riders creates a sense of belonging among their peers
and gives them the opportunity to be with other children (Little Riders, 2016).
Websites
There is a multitude of websites for families affected by cerebral palsy but a main one is
www.cerebralpalsy.org. On this site, families can look up anything about the disease and read
stories of other families who have succeeded in living a full life despite having a child with CP.

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There are links and phone numbers to lawyers and medical professionals who can help to
provide financial and medical support to a child with CP. One very important part of the website
is The Cerebral Palsy Blog. This is a blog that is updated weekly with a new topic for caregivers
about cerebral palsy. Readers of the blog can comment and provide support to one another as
well as answer ask and answer questions. The blog covers topics ranging from different activities
to do with a child with CP to different technologies that are useful and how families can deal
with unwanted judgment. The entire site offers ways to be a strong advocate for a child and cow
to combat all of the challenges that come along with the diagnosis of cerebral palsy.
Role as a Child Life Specialist
As a child life specialist, a person can make a family affected by cerebral palsy feel
accepted and cared for. It is important that a specialist treats the child with CP as an equal
member in a family and can help to put value on their role in their family (E. Schwab, personal
communication, May 8, 2016). It is important that a child life specialist communicates with the
family to help clear up confusions and misunderstandings about their childs diagnosis. A
specialist can provide sibling support by explaining cerebral palsy to them and allowing them to
express their fears and concerns regarding their sibling with cerebral palsy. Specialists can also
provide interventions and teachings geared toward siblings so that they can understand cerebral
palsy in a way that makes sense to them. They can also explain to a sibling how they can be
supportive of their sibling with CP and how they can be involved with their treatment. A
specialist can help a family to function as a whole by clearing up misconceptions and by
providing a safe place for families to come together to talk about their concerns. Cohesion and
understanding between the family and the multidisciplinary medical staff can be created by a
child life specialist in order to ensure a more supportive environment for all involved.

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Conclusion

Cerebral palsy can change a child and a familys lives in multiple ways and it takes much
support and understanding for all involved. Each case of cerebral palsy is different and as a
result, the care and treatment plan for each child will differ as well as the psychosocial stressors
for the family. A disease like this can either tear a family apart or bring them closer so medical
professionals, family and friends must learn how to provide support and care for families
struggling with cerebral palsy. This can be accomplished with resources including websites,
blogs, books and support groups for family and friends to attend in order for them to continue
having meaningful and supportive relationships with each other. A child with cerebral palsy
deserves to have a high quality of life and to be involved with their family and peers. It takes
much effort, time and dedication but it is always possible for a child with CP to have a happy and
fulfilling life with the help of their loved ones.

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