Physical Therapy Management of a 6-Year-Old with Pre-existing Tuberous Sclerosis and

Left-Sided Hemiparesis following Right Hemispherectomy for Intractable Epilepsy

Author: Jennifer Millisor, SPT

Research Advisor: Rochelle Bourassa, PT, DPT, CLT-LANA, CWS

Doctoral Program in Physical Therapy

Central Michigan University
Mount Pleasant, Michigan

April 12, 2021

Submitted to the Faculty of the

Doctoral Program in Physical Therapy at
Central Michigan University
In partial fulfillment of the requirements of the
Doctorate of Physical Therapy

Accepted by the Faculty Research Advisor

Rochelle Bourassa, PT, DPT, CLT-LANA, CWS

Date of Approval: April 12, 2021
 ABSTRACT
Background and Purpose
Intractable epilepsy is a common clinical manifestation seen in children with tuberous

sclerosis, a rare genetic condition causing benign tumor growth throughout the body.

Hemispherectomy surgery is a viable treatment route for these children when antiseizure

medications prove to no longer be effective. Children with a history of intractable epilepsy who

undergo a hemispherectomy are left with significant functional weakness, severely impaired

mobility, and hemiparesis or hemiplegia. Guidelines for physical therapy management of these

children in an outpatient setting is scarce. The purpose of this case report is to document the

effectiveness of possible treatment interventions to guide physical therapy management of low-

level functioning pediatric patients in the outpatient setting following a hemispherectomy.

Case Description
A 6-year-old Caucasian female presented to a specialized outpatient pediatric clinic with a

referral for left sided hemiparesis following a right hemispherectomy for management of

intractable epilepsy. The child was dependent in all ADL’s, wheelchair bound, non-verbal, and all

functional mobility tasks prior to receiving surgery.

The child was seen twice weekly for treatment session lasting 45 minutes to 1 hour in

duration. Interventions focused on strength and mobility through the primary use of therapeutic

exercise, therapeutic activity, transfer training, balance training, gait training, and manual therapy.

Outcomes

The duration of this case report documented the child’s progress over 16 weeks; however,

she was still receiving therapy after completion of this case report. At week 16, the child required

decreased assistance with transfers, could ambulate 426 feet in a Rifton© pacer gait trainer in 6
minutes, and was able sit unsupported on static and dynamic surfaces with contact-guard assist

only indefinitely. The child’s mother subjectively reported improvements in participation and

alertness.

Discussion
Children who undergo a hemispherectomy for management of intractable epilepsy may

benefit from receiving skilled physical therapy intervention in the outpatient setting to address

functional mobility, strength, balance, and gait efficiency. Future research should be conducted to

evaluate the ideal frequency and intensity of physical therapy interventions, as well as on specific

evidence-based intervention protocols to guide management to improve the effectiveness of

rehabilitation in the pediatric population.

Background and Purpose
The primary diagnoses impacting the child in this case report includes tuberous sclerosis

and intractable epilepsy, however it is important to note that the primary referral for physical

therapy was for left sided hemiparesis following a right hemispherectomy for management of

intractable epilepsy. Although tuberous sclerosis and intractable epilepsy are not the primary

reasons for physical therapy intervention in this case, it is important that the reader understand

the rarity of these diagnoses as they directly pertain to the child’s course of treatment and

resultant need for physical therapy. The rarity and management of these diagnoses will be

discussed below.

Tuberous Sclerosis

Tuberous sclerosis (TSC) is a rare genetic condition that causes benign tumor growth

throughout the body, specifically the brain, eyes, kidneys, lungs, and most commonly, the skin.

The condition is caused by a mutation in the TSC1 or TSC2 genes. A mutation in these genes leads

to increased cellular proliferation in a variety of different tissue types throughout the body.1

Overall clinical presentation of the condition can vary greatly depending on the rate of cellular

growth in that certain individual. The autosomal dominant mutation that causes TSC occurs in an

estimated 1 in every 6,000 births; while most occur from a random mutation, a small percentage

of genetic mutations are inherited.2 In this case report, the child inherited the genetic mutation

from her father who also had tuberous sclerosis. One of the most common clinical manifestations

of TSC is epilepsy as it is estimated that between 75-94% of individuals with TSC experience

some extent of epileptic seizure activity in their lifetime.3

Epileptic Syndromes and Classification

1
 Epileptic activity in children is often classified as intractable or refractory epilepsy.3

Intractable and refractory are often used interchangeably to describe an epileptic disorder that

fails to be controlled following trials of at least two different antiseizure medications.4

Additionally, epileptic disorders can also be characterized to be with or without status

epilepticus. Status epilepticus (SE) is defined as “a continuous seizure lasting more than 30 min,

or two or more seizures without full recovery of consciousness between any of them.”5 Once a

child’s epileptic disorder is considered to be intractable, a widely accepted method of medical

management is surgical intervention, specifically hemispherectomy surgery.6

A hemispherectomy is a surgical procedure in which one hemisphere of the brain is

surgically removed with the purpose of reducing or resolving intractable seizure activity that is

coming from a single cerebral hemisphere.7 Estimated admission rates for pediatric patients

receiving a hemispherectomy in 2009 was 2.2 children per every 100,000.8 This was the most

recent data that the author was able to find when performing a literature review.

Outcomes. Complete seizure reduction following a hemispherectomy can range from 50%- 88%

based on the underlying pathology of the seizure activity. 9 Although it should be noted that some

children do not experience a complete reduction of seizure activity, 88%-100% of children are

likely to have a reduction of 75% or greater in seizure frequency.9 The likelihood of improved

motor function is positively correlated with seizure reduction.10 The use of a hemispherectomy

for the management of intractable epilepsy is supported in literature as outcomes regarding

seizure control are very positive.4,7,9,11

The child was a good candidate for a case report because of her multiple rare diagnoses

and complex clinical presentation. There is little known in the literature on how these

complexities and severe functional limitations respond to therapy intervention due to the rarity of

2
the conditions. When considering the plan of care for this child, it should be noted that

intervention strategies were selected based upon her impairments and functional limitations

rather than her diagnoses due to the limited applicable literature available.

Despite the supported use of hemispherectomy surgery for the management of intractable

epileptic syndromes in the pediatric population discussed previously, to the authors knowledge,

there is minimal evidence of effective physical therapy intervention strategies post

hemispherectomy in this population once they are referred to an outpatient setting for care.

Physical therapy management recommendations that were discovered during the literature

review were specific to the acute care evaluation and management of the child immediately

following surgery or were too advanced for the child’s current level of functional mobility at the

time the outpatient physical therapy evaluation was performed.

The purpose of this case report aims to document the effectiveness of possible treatment

interventions to guide physical therapy management of low-level pediatric patients in the

outpatient setting following a hemispherectomy.

Prior to preparing this report, assent was obtained from the child and consent was

obtained from the child’s mother to proceed. All information contained in this case report meets

the Health Insurance Portability Accountability Act requirements of the clinical agency for

disclosure of protected health information. This case report was completed under the direction of

the Department of Physical Therapy and with the oversight of the College of Graduate Studies at

Central Michigan University and in accordance with procedures approved by the Institutional

Review Board at Central Michigan University.

Case Description

3
Patient History and Systems Review
History of current problem. The child is a 6-year-old Caucasian female who was referred to

outpatient pediatric physical therapy following a right hemispherectomy. The child had

undergone surgery 19 days prior to the evaluation. The child was receiving therapy services at

the same facility prior to surgery for impairments related to frequent epileptic seizures. The child

was born at full term via vaginal delivery without any complications. Symptoms began days after

birth when the child started experiencing frequent seizure activity. During the first week after

birth the parents became concerned when the child would become upset for prolonged durations

and could not be consoled. The family sought physician consultation and the episodes were

subsequently diagnosed as seizures. Pharmaceutical management of the seizure activity was

found unsuccessful during the child’s first 5 years of life and the child’s epilepsy then became

uncontrollable. At the age of 6, the child’s parents, along with the recommendation of the child’s

doctors, elected the child undergo a right occipital and temporal lobectomy with insular resection

in attempt to control the epileptic activity. Unfortunately, this procedure was not successful and a

complete right hemispherectomy was performed 12 days later. The child remained in the hospital

for 22 days prior to being discharged to outpatient physical therapy. To the child’s parents and

doctor’s knowledge, the child had not experienced any seizure activity since the

hemispherectomy surgery.

Past medical history. Current medical history, of significance to this case, includes multiple

neurological conditions and impairments. At the age of 2 years old, the child was diagnosed with

tuberous sclerosis, a rare genetic condition that results in benign tumor growth throughout the

body.1 Additional diagnoses strongly related to tuberous sclerosis include intractable epilepsy

with status epilepticus, intractable partial epilepsy with impairment of consciousness, refractory

4
epilepsy, and intractable Lennox-Gastaut syndrome (LGS) without status epilepticus. LGS is a

rare childhood form of epilepsy in which a child experiences multiple different types of seizures,

delayed cognitive development, and slow spike wave activity on an electroencephalogram.12 The

child has also been diagnosed with hemiplegic cerebral palsy, global developmental delay,

oropharyngeal dysphagia, and autism spectrum disorder. In addition, the child had a gastrostomy

tube (G-Tube) for all feedings. A review of the child’s medications at the time of this case report

can be found in table 1.

Prior level of function. According to the mother, the child was non-ambulatory but was able to

statically sit up on her own and independently scoot across the floor on her buttocks prior to her

hemispherectomy surgery. The child’s mother reports that her seizure activity had been

increasing over the last few weeks before her surgery and that she had demonstrated a decline in

her ability to weight bear in the lower extremities and thus, had difficulty in functional mobility.

At that point, the child required maximum assistance in all transfers and demonstrated poor

endurance with functional tasks. She was also non-verbal with the exception of occasional single

syllable words or letter sounds. The child was receiving speech language therapy, occupational

therapy, and physical therapy prior to surgery.

Home environment/Lifestyle. At the time of initial evaluation for the most recent episode of care,

the child lived at home with her parents and younger sister. Durable medical equipment and

orthotics utilized included bilateral hinged AFO’s, a Rifton© pacer with a saddle seat and

bilateral upper extremity supports, an activity chair, an upper extremity mobilizer when

necessary, and a wheelchair. A Rifton© pacer is a piece of adaptive equipment used for gait

training with individuals who require additional assistance to walk. The child’s mother acted as

the primary caregiver, assisting the child in all functional mobility tasks and activities of daily

5
living including feeding, bathing, dressing, personal hygiene, and transfers. The family did not

own a wheelchair accessible vehicle and the parents had to manually transfer the child into and

out of her wheelchair for travel. The family has plans for the child to begin mainstream

kindergarten about one and a half months post hemispherectomy; she would be provided with a

paraprofessional throughout the entire school day.

Patient goals. The mother’s goals for her daughter were to gain enough strength and mobility to

allow for more independence at home.

Clinical Impression #1

Upon referral to outpatient physical therapy and completion of the chart review and

subjective portion of the evaluation, it was clear that the child would likely benefit from skilled

physical therapy services and a formal evaluation would be necessary. Based on the information

collected at that time, it was expected that the child’s most relevant impairment would be her

lack of mobility. It would be important to objectively assess the amount of assistance the child

required for a variety of transfer tasks as well as her sitting and standing endurance and balance

reactions to determine if she would be safe if left alone in either of those positions. Limited

flexibility, especially in her hamstring and hip flexors, was also expected to be impaired due to

the amount of time she spent sitting in her wheelchair throughout the day. It would be important

to assess lower extremity range of motion and flexibility because of the impact that would have

on her ability to achieve an upright standing position and subsequently allow for gait training

moving forward in therapy. Also, based on the child’s observed posture in sitting, left

hemiparesis was apparent. It should be noted that the hemiparesis was present prior to surgery as

a result of her frequent seizure activity. Going forward, monitoring the amount of voluntary

muscle strength the patient had in the left upper and lower extremity be an important factor in

6
monitoring progress and functional outcomes. One of the largest barriers to therapy hypothesized

at this time was that the child was non-verbal, had difficulty following commands, and cognition

and awareness to her situation was unclear.

Examination

The initial examination was performed by the primary physical therapist at the facility

and the information reported in this section was taken from her examination findings. The

examination occurred 19 days post-op right hemispherectomy at pediatric outpatient clinic. The

child arrived to the evaluation in a wheelchair being pushed by her mother. Bilateral lower

extremities were being supported by foot plates, her trunk was supported by a chest strap and

seat belt around her waist. The child’s left upper extremity was hanging down by her side. The

child’s understanding of the environmental context was unclear. The patient was non-verbal,

however based on her vocalizations and facial grimacing, she appeared to be experiencing pain

and discomfort.

Tone. A formal assessment of tone was assessed by moving the child’s joints passively through

the available range of motion (ROM) at various speed to assess for any occurrence of increased

resistance to movement. The presence of resistance to movement when the extremity was moved

at an increase velocity indicates the presence of spasticity. The assessment method utilized was

described by O’Sullivan in Physical Rehabilitation 6th Edition.13 The child’s upper and lower

extremities, as well as her trunk were generally hypotonic, more notable in the left upper and

lower extremity compared to the right. No spasticity appeared to be present at that time.

Resistance to knee extension in bilateral lower extremities was due to the presence of hamstring

contractures rather than spasticity.

7
Range of Motion. A ROM assessment utilizing protocols outlined by Loubert et al14 were

attempted, however, the child’s cooperation and ability to maintain a position for moderate

durations likely negatively impacted the reliability and validity of the measurements that were

taken. Therefore, the true reliability and validity of the ROM procedures used with this child are

undetermined as standardized positioning was not used. With the exception of hip extension, hip

abduction, and ankle dorsiflexion, the child’s passive ROM bilaterally was observed to be within

functional limits (WFL), Hip extension was lacking 6 degrees from neutral on the left and 5

degrees on the right. Bilaterally, her hip abduction passive ROM was measured at 30 degrees

bilaterally. Passive left ankle dorsiflexion was 18 degrees and passive right ankle dorsiflexion

was 12 degrees. Active ROM was visibly limited, likely due to low tone and muscular weakness.

Please see table 2 for a summary of ROM findings.

Muscle Length and Flexibility. Hip flexor flexibility was assessed with the child in side-lying

using a modification of Ely’s Test to specifically target the iliopsoas. Modification of Ely’s test

was indicated due to the child’s inability to maintain the standard testing position. The child

demonstrated poor tolerance to lying supine and had difficulty relaxing the contralateral lower

extremity in order to fully assess for hip flexor tightness. The modified procedure performed is

as following. With child lying supine on the uninvolved side, and knee of the test limb extended

as much as possible, the therapist then moved the limb into hip extension until end range of

motion was felt. A goniometric measurement was then taken to determine how many degrees of

hip extension could be achieved. The reliability and validity for the testing procedure performed

is undetermined as positioning was modified due to the child’s inability to perform standardized

protocols. At the hip, the child lacked 5 degrees of hip extension from neutral on the right and 6

degrees of hip extension from neutral on the left. The child’s hip flexor muscle length

8
measurements were the same as her hip extension ROM measurements, indicating the presence

of possible muscle or joint contracture. These findings are concurrent with the fact that the child

remained in a wheelchair for much of her day with bilateral hips flexed at 90 degrees. Bilateral

hamstring length was taken utilizing the supine 90/90 method described by Starkey et al in

Examination of Orthopedic and Athletic Injuries.15 Inter-rater reliability of hamstring length

testing procedures identified by Starkey et al was >0.90 is considered to be very reliable.15 Test-

retest reliability is also very reliable at 0.90.16 Concurrent validity of the supine 90/90 test, also

referred to passive knee extension (PKE), to the straight leg raise (SLR) is .66 indicating that a

large popliteal angle with PKE correlate with a greater SLR measurement.16,17 She was able to

achieve 130 degrees of knee extension on both the left and right lower extremities indicating a

significant limitation in hamstring flexibility and a positive supine 90/90 test bilaterally.

Similarly, these findings are consistent with the child sitting her wheelchair for the majority of

the day with knees in a flexed position. Gastrocnemius length was assessed by placing the knee

into extension and then passively dorsiflexing the ankle until end range.15 Although Starkey et

al15 describes the testing position as prone, it was modified due to child’s decreased tolerance for

prone positioning due to the placement of a G-tube. The inter-rater reliability of gastrocnemius

testing is considered very reliable at 0.75.15 The child achieved 8 degrees of dorsiflexion on the

right ankle and 5 degrees on the left ankle. Please see table 2 for a summary of muscle length and

flexibility findings.

Functional Strength. Performing specific manual muscle testing utilizing standardized positions

described by Reese18 was not appropriate for this child as her cognitive status limited her ability

to follow directions and perform muscle activation upon command.12 Gross functional strength

observations were recorded. In general, the child’s functional strength was significantly

9
decreased in her lower extremities, upper extremities, and trunk. The child’s ability to hold her

head up was unaffected. When indicating the amount of assistance needed during functional

transitions, classification criteria outlined by Fairchild et al was used.19 Refer to Table 3 for

definitions of classification criteria terminology used throughout this case report. When

performing a standing pivot transfer from the wheelchair to a 17-inch therapy bench, she

required maximal assistance as she was not able to assume upright trunk posture. From that same

17-inch therapy bench, she was encouraged to perform a sit to stand. Maximal assistance was

required, and the child was only able to maintain in the standing position for approximately 7

seconds before initiating sitting. In standing, she also relied on the therapist to support her trunk

as she had little to no activation of lumbar extensors. When completing a floor transfer,

transitioning from standing to the floor, the child had very poor eccentric control and relied on

the therapist for maximum assistance. Once on the floor, the child was able to perform a floor to

sit transition from supine to sitting using her right upper extremity only. In, a circle sitting, the

child demonstrated poor muscular endurance and was only able to assume the position for 20-30

seconds prior to leaning back to rest of the therapist for support. Pull to sit and rolling to and

from supine were also assessed. Depending on the child’s motivation, the assistance required to

perform a pull to sit ranged from minimum to maximum assistance. The child was not observed

rolling from prone to supine, however, she was independently able to roll from supine to prone.

At the time of evaluation, the therapist determined that it would not be safe to assess the child’s

ability to perform quadruped because of the high level of assistance she expected the child would

require.

Posture. Although a formal postural assessment was not performed, observations made in sitting

and standing are as described. In sitting, the child had significant rounding of the shoulders and

10
showed a tendency to circle sit with a preference for bilateral hip external rotation and abduction.

She was unable to assume a long sitting position with an upright trunk as a result of poor

hamstring flexibility, impaired core strength and low tone. In standing, with maximal assistance

provided for weight bearing, the child assumed a significantly crouched posture and was unable

to assume bilateral hip and knee extension causing her center of gravity to sit posterior at the

hips. This led to difficultly in performing an anterior weight shift when trying to stand.

Balance and Postural Reactions. Sitting balance was assessed on a swing with the therapist

sitting behind the child assisting her as needed. Mild perturbations were experienced upon

initiation of anterior/posterior swinging movement. The child demonstrated poor sitting balance

and was only able to maintain the position for 30 seconds. At the time of assessment, there were

no standardized balance assessments that were appropriate for the child to perform as her

functional abilities at that time would have resulted in a floor effect. A floor effect occurs when

the skills on the assessment are too difficult for the individual to perform to any extent.20

Gait. Although improved gait and mobility were goals of the family, at the time of evaluation,

the child was not appropriate for a gait assessment as she was unable to maintain an upright

trunk for greater than 30 seconds or weight bear on bilateral lower extremities without maximum

assistance. As the child progressed, she would be reassessed for appropriateness to begin gait

training with a Rifton© pacer within in the clinic. At that time, a 6 Minute Walk Test (6MWT)

would be performed to determine her baseline. The 6MWT has been proven safe to be used with

children and shows excellent test-retest reliability when used with school aged children with

cerebral palsy.21,22 The 6MWT when used with adult patients following hemiplegic strokes has

excellent test-retest reliability and adequate inter-rater and intra-rate reliability.23 A 6MWT was

performed on week 8 when the child demonstrated that she was able to maintain upright trunk

11
posture in sitting without assistance and could continuously propel herself forward independently

in a Rifton© pacer. A Rifton© pacer is piece of safe patient handing equipment, specifically a

gait trainer, that is often used with individuals of all ages who require additional assistance with

walking. The child was initially able to ambulate 253 feet upon completion of the 6MWT. At 3

minutes 30 seconds the child began to propel herself with only her right lower extremity, letting

her left lower extremity drag behind her. She began to perform reciprocal stepping again at 4

minutes and 45 seconds and continued until the end of the test. Multiple 3-5 second pauses were

taken throughout, likely due to distraction rather than fatigue. The child’s gait mechanics showed

significant bilateral hip external rotation causing her to push off the medial border of her foot.

Additionally, gait speed and step length were inconsistent and varied throughout the duration of

the assessment. For female children aged 6-8 years old, the average distance for ambulation is

1880.6 ft ± 227ft.21 Compared to age and sex norms, it is indicated that the child in this case

report had a significant gait impairment and poor cardiovascular endurance.

Clinical Impression #2
Based upon findings of the objective portion the evaluation, additional data was collected

that further verified the child’s need for skilled physical therapy services. The cause of the left

sided impairments documented in the examination portion of the evaluation were a direct result

of the child’s recent right hemispherectomy surgery. In addition, weakness of the right side of

the body was likely related to the long-term seizure activity the child had experienced over the

course of her life. Collectively, the culmination of both led to significant functional weakness

and severely impaired mobility. The impairments identified in the examination portion of the

evaluations are impacting the child’s functional ability to sit, stand, walk, and transition in and

out of various functional positions without assistance. These functional impairments directly

12
impact the child’s ability to participate in age-appropriate play and freely engage in exploration

of her environment. In addition, the child’s current status is placing significant physical and

emotional strain on the mother as she is the primary caregiver.

In conjunction with the family’s goals for their daughter and the findings of the

examination, it was determined that functional mobility and strength would be the focus of selected

interventions; specifically utilizing transfer training and developmental postures. When

appropriate, the mother requested that gait training also be included in the child’s plan of care; the

therapist agreed as ambulation and upright mobility is widely supported and provides benefits

including weight bearing and skeletal loading, improved lower extremity alignment, increased

range of motion and contracture prevention, tone management, and increased alertness. Trunk and

head control, postural endurance, and generalized strength are also positively impacted by use of

a gait trainer. Independent mobility also can provide positive psychological benefits such as self-

efficacy. 24 Additionally, saliency and task specific practice would be important for neuroplasticity

as the child worked toward improved gait efficiency.25 It was also clear the range of motion and

muscle flexibility, especially of the lower extremities, would need to be addressed for the child to

achieve improved mobility during transfers as well as efficient gait mechanics. In addition,

interventions to address balance and sitting endurance would also benefit the child and her family

as it would help to reduce the overall supervision required, allowing the child to safely be left alone

at times such as floor play.

This child was given a fair physical therapy diagnoses due to the uncertainties surrounding

what realistic functional improvements may actually result following therapy and the duration of

time it would take for them to be seen considering her functional impairments prior to surgery.

Her other diagnoses such as cerebral palsy, autism spectrum disorder, and tuberous sclerosis may

13
also have unknown effects on her prognosis. Predicting the physical therapy prognosis of this child

proved difficult because the neuroplastic process is not fully understood in individuals who have

undergone a hemispherectomy. In the case of someone with a hemispherectomy, the principles of

neuroplasticity apply, however, reorganization and neuroplastic changes are solely dependent on

the remaining brain hemisphere to compensate and carry out motor function of the hemiparetic

side.10 Therefore, the full extent of functional return is very individualized. A positive factor to the

child’s rehabilitative prognosis was that she had a complete resolution of seizure activity following

surgery; therefore, the likelihood of her experiencing a return of motor function was greater than

if she had continued to have seizures.10

Further clinical decision making based upon the objective findings led the clinical

instructor and physical therapist student to select intervention strategies often used with patients

following a stroke, as the child’s clinical presentation was comparable. Although limited, there is

evidence in support of using pre-existing intervention strategies utilized with patients with stroke

or cerebral palsy with children following hemispherectomy surgery.26

Prior to beginning therapeutic intervention, written and verbal consent was obtained from

the child’s mother regarding the plan of care.

Interventions

Specific interventions provided to this patient will now be described. Interventions

included in the child’s plan of care consisted of therapeutic exercise, therapeutic activity, gait

training, neuromuscular re-education, manual therapy, pharmaceutical management, orthotics

and assistive devices, and a home exercise program. The child was seen for 1-hour long therapy

sessions, twice weekly, typically on Tuesday and Friday. The child had continued to receive

physical therapy services beyond the time of completion of this case report. The child’s mother

14
was present for all physical therapy sessions and assisted the clinical instructor and physical

therapist student in keeping the child engaged and participating in each exercise.

Therapeutic Exercise. Due to the child’s impaired cognitive status, muscular strengthening was

primarily performed using developmental postures; specifically, quadruped, side sitting, short

kneeling, tall kneeling, and half kneeling during play. Once in these positions, the clinical

instructor would engage and encourage the child while the physical therapist student provided

manual assistance and facilitation. Therapeutic exercises were structured in a circuit format with

each position being held for 30 second to 1-minute intervals for 3-4 repetitions with 1-2 minute

breaks between each circuit. In addition, kicking activities, with the child sitting on a 17in

therapy bench, were also utilized to encourage strengthening of the quadriceps bilaterally. Other

lower extremity strengthening exercises included the use of a Rifton© therapy tricycle and sit-to-

stands. According to the Rifton© website, a tricycle can be used for lower extremity

strengthening, reciprocal leg motion patterning, balance, spatial perception for stepping, and

recreational purposes.27 When on the tricycle, the child required trunk support with a chest strap,

a seat belt around her waist, a circular resistance band at the knees to help pull bilateral lower

extremities into a neutral alignment, and hand straps to assist in holding her left upper extremity

on the handlebar. Sit-to-stands were performed with assistance ranging from moderate assistance

to bilateral hand-held assistance. The child’s upper extremities were supported and blocking of

the left knee for buckling was utilized. Assistance level often depended on the child’s motivation

to participate or fatigue level on that specific day.

Therapeutic Activity. Intervention strategies addressed under therapeutic activity included

transfer training and floor mobility. A variety of transfers were performed each session and were

selected based upon what the mother had identified as difficulty at home. Transfer training

15
addressed modified standing pivot transfers to both the left and right from one 17-inch therapy

bench to another. To perform a modified standing pivot transfer, the child would be prompted to

stand, take 2-4 side steps, and then pivot her bottom to another bench positioned at a 90-degree

angle to her left or right. This modification was selected to encourage greater participation from

the child when transferring. Floor transfers from the 17-inch therapy bench to the floor mat, and

floor to stand transfer from the floor mat back to the wheelchair or therapy bench were also

performed. Floor mobility including scooting across the ground was also practiced and aimed to

improve the child’s independence in navigating through her environment when on the floor at

home or at school. Prepositioning of the lower extremities of bilateral lower extremities was

utilized along with minimal to moderate assistance by the physical therapy student for successful

scooting to occur.

Neuromuscular Re-education. Balance training began with short sitting on a therapy bench and

ring sitting on the floor mat with no perturbations. Progression to short sitting on a swing and

crisscross sitting on a wobble board with minimal to moderate anterior/posterior and lateral

perturbations was performed when the child demonstrated that she was able to perform static

sitting independently indefinitely. Contact guard assistance (CGA) was provided for safety during

all dynamic balance training. Utilization of bilateral upper extremity support was required when

on the swing. Crisscross sitting on the wobble board unsupported with CGA by the therapist was

also implemented.

Gait Training. The child was first placed in the Rifton© pacer gait trainer at her fourth appointment

following the initial evaluation, when she demonstrated that she was able to perform a sit to stand

with only hand-held assist and was also able to take 3-5 steps with moderate assist of 1 additional

person. The child also showed interest toward using the gait trainer contributing to the clinical

16
instructor’s decision that the child was ready to progress her walking. The child owned a medium

sized Rifton© pacer with a saddle seat and bilateral upper extremity support. The child’s family

agreed to bring the gait trainer to the outpatient therapy clinic for the duration of her therapy as it

was too large to use at home. Over ground and treadmill training with the child in a Rifton© pacer

gait trainer were both utilized. When over ground training was performed the child ambulated on

rubber, carpet, and tile flooring for straight stretches with 1-2 turns. Treadmill training was

performed with the Rifton© gait trainer secured on the standing rails of the treadmill. All four

wheels of the gait trainer were locked into place and the emergency stop key for the treadmill was

engaged. In addition, the child’s mother was also at the head of the treadmill and was directly

controlling the speed; she was also available to press the stop key manually if necessary. The

clinical instructor and physical therapy student were on either side of the child providing manual

facilitation for appropriate stepping mechanics. Treadmill training was initiated at speeds between

0.5-1 mph as this speed allowed for proper facilitation of gait mechanics and stepping by the

clinical instructor and student physical therapist. Although studies show that training benefits do

not vary largely based on speed, treadmill training at faster speeds, 2.0 mph, do have the best carry

over of gait speed to overground walking long term.28 Despite this evidence, faster speeds were

not appropriate for this child as she would not have been able to initiate stepping movements that

quickly. After treadmill training was performed 2-3 times, it was noted that the child’s willingness

to participate was less as compared to when performing over ground training throughout the clinic.

Therefore, over ground gait trainer became the primary method of gait training as she remained

more engaged throughout and showed increased effort in stepping.

Manual Therapy. Manual stretching was performed during at least one of the two appointments

the child had weekly. Hamstring stretching was performed with the child in a supine 90/90 position

17
or in a half-tailor sitting with the therapist sitting posterior the child to encourage upright trunk

posture throughout the stretch. Half-tailor sitting is a position in with an individual is sitting on

their bottom with one lower extremity extended and slightly abducted while the other lower

extremity is externally rotated and abducted at the hip with the knee flexed and foot parallel to the

contralateral thigh. The child tolerated stretching in the half-tailor position the best while engaging

in a toy or singing. Tolerance to stretching varied from session to session. Although the child could

not verbally express that she was in pain, beginning on week 13, she consistently began to show

reluctance in allowing people to handle both her left upper and lower extremity, as well as

displaying facial grimacing and vocalizations that the mother identified as discomfort. In

conjunction with feedback from her neuromuscular specialist, it is believed that the child was

likely experiencing a new onset of nerve pain. This has a negative impact on the amount and

quality of stretching performed.

Pharmaceutical Intervention. During weeks 13-16, tolerance to manual stretching and handling of

the left upper and lower extremities continued to decrease as well as the amount of weight she was

willing to place on her left lower extremity during transfers. The clinical instructor and the child’s

mother both reached out to the child’s neuromuscular specialist to discuss possible solutions as the

discomfort was beginning to negatively impact the child’s weight bearing status and functional

mobility. It was recommended that the child receive Botox injections in bilateral lower extremities

upon recommendation of her neuromuscular specialist with the intention of increasing muscle

length and decreasing any potential pain she was experiencing. The injections were planned to be

given on week 18 but ended up being postponed to week 20. Expectations were discussed with the

child’s mother to increase the frequency and intensity of bilateral stretching to 3-4 times a day for

approximately 5 minutes on each lower extremity to facilitate a greater increase in muscle length

18
and flexibility due to the physical therapy treatment session following the Botox injections being

cancelled due to the holiday season.

Orthotics and Assistive Devices. Over the course of treatment, a wheelchair assessment was

completed, and the child was fitted for a new Rouge XP wheelchair with single arm drive from Xi

Mobility, and a large sized Rifton© pacer gait trainer as she had experienced a growth spurt and

no longer appropriately fit her current equipment. At the time of completion of this case report,

both pieces of equipment had been ordered, although the child had not yet received either. The

child was also re-casted for a new set of bilateral articulating ankle foot orthoses. Following

consultation with the orthotist, it was decided to add check straps to bilateral orthoses as well. The

purpose of these orthoses was to provide the child with added support and stability to prevent

calcaneal eversion and forefoot adduction when the child was weightbearing during standing

transfers and ambulation.

Home Exercise Program. The child and her family were provided with a home exercise and

stretching program that included hamstring stretching, transfer training, and floor mobility.

Transfer training techniques and alternatives were discussed in depth as the mother was typically

alone in the home with the child and would need to do all transfers on her own. These exercises

were selected because the child and her mother would be able to safety perform them at their

home without assistance from additional assistance and would help to improve transfer

efficiency overtime. Additionally, the child’s home had limited space and did not allow for

adequate space for use of the gait trainer.

Outcomes

19
 Over the 16-week course of treatment, the child’s progress was reassessed every 4 weeks.

Upon completion of this case report, the child was still receiving skilled physical therapy twice

weekly for 45 minutes to 1-hour in duration each session.

Muscle Length and Flexibility

From the initial time of evaluation to re-assessment on week 16, the child gained 21

degrees of hamstring flexibility in the left lower extremity and 32 degrees in the right lower

extremity. Results for hamstring length progression over the course of treatment can be found in

Figure 1. Functionally, increasing hamstring flexibility allowed the child to achieve more typical

gait mechanics. Specifically, the quality of gait components such as terminal knee extension,

terminal hip extension, step length, heel strike, and heel off all improved. Also, an increase in

hamstring length also allowed the child to assume a more upright posture when standing as she

was no longer significantly limited in knee extension.

Functional Strength

Quantitatively, the child made minimal progress in some areas and greater progress in

others. However, qualitatively, the child showed significant improvements in the overall quality

of her movements. Subjectively, the child’s mother reported improved ease in performing the

transfers at home as an increase in the child’s level of participation. Quantitative progress made

in the amount of assistance required for functional transitions and transfers can be found in Table

5.

Qualitatively, the child progress was as follows. When performing a modified standing

pivot transfer, the child needed moderate assistance, specifically to the left due to her left

hemiparesis. To the right, the child was able to complete the transitions with minimal assistance.

20
Assistance was needed for maintenance of upright trunk posture, weight shifting, and for step

placement of the left lower extremity. The areas in which the child made the most progress was

in her ability to perform sit- to-stand followed by static standing. At initial evaluation, the child

needed maximal assistance to perform a sit to stand from a 17-inch bench. Upon completion of

the case report, the child required only 2-hand held assistance with blocking at the left knee to

prevent buckling from the physical therapy student and frequent tactile cueing at the glutes by

the primary physical therapist for sustained bilateral hip extension. Standing was able to be

maintained for 30 seconds to 1 minute. The child made no progress in performing a floor transfer

as she continued to require maximal assistance at the conclusion of this case report. Although no

progress was made functionally, the mother did report that the child participated more during the

transfer by using the American sign language sign for “down” when she wanted to move to the

floor and by using bilateral upper extremities, primarily her right, to hold on to the individual

who was performing the transfer with her. When sitting on the floor, the child was able to

maintain sitting indefinitely and was able to weight shift in all directions to reach for toys and

people around her with no loss of balance or signs of fatigue. The child could perform an assisted

sit to quadruped with moderate assistance but only is broken up into a transition from sitting to

kneeling and then kneeling to quadruped. Table 5 provides a summary of these outcomes.

Posture.

Overall posture remained the same throughout the course of treatment. The child’s sitting

posture continues to show a posterior pelvis tilt with significant external rotation and abduction

of bilateral lower extremities; thoracic kyphosis also remained present. In standing, her hips sat

posterior to her center of gravity, and she struggle to maintain neutral positioning at the hips as

she typically was slightly flexed at the trunk requiring support by the physical therapist.

21
However, she did respond better to tactile cueing for hip extension which did allow her to

assume a more upright trunk posture when prompted.

Balance and Postural Reactions.

The child was able to maintain static short sitting for the duration of a 1-hour therapy

session with no postural sway. She was able to maintain dynamic short sitting on a swing with

CGA for safety while moderate medial/lateral and anterior/posterior perturbations were being

applied with no signs of fatigue for 5 minutes. Increased balance and postural reactions allowed

the child to be safely left alone when sitting on the floor at home and engaged in play. This was

an improvement compared to the onset of therapy when she was only able to maintain sitting

independently for 30 seconds and on static surfaces only.

Gait

Upon re-assessment of the 6MWT, the child improved her performance by 172 ft over

the course of 8 weeks. Over the course of those 8 weeks, improvements were seen in the

consistently of reciprocal stepping and utilization of her left lower extremity. The child’s

motivation to participate, gait speed, and cardiovascular endurance also improved as she was

able to complete an entire therapy session without presenting with any observational signs of

fatigue such as shortness of breath or redness of the cheeks.

Goals

Refer to Table 4 for a list of the child’s goals throughout the course of this case report

and the weeks in which she accomplished them.

Discussion

22
 This purpose of this case report aimed to document the effectiveness of possible

treatment interventions to guide physical therapy management of low-level pediatric patients in

the outpatient setting following a hemispherectomy. Literature on generalized motor outcomes

following hemispherectomy is greater than the evidence on physical therapy protocols for

management of this population. Expected motor outcomes can be predicted, however, the

rehabilitative course of treatment to get there is currently based purely on upon research specific

to patients with other chronic neurological conditions, primarily stroke and traumatic brain

injury. This case report aimed to provide the physical therapy profession with possible

intervention strategies to guide the treatment of low-level pediatric patients who have undergone

hemispherectomy surgery for intractable epilepsy or other neurological diagnoses.

This case report suggests that children who undergo hemispherectomy surgery may

benefit from receiving skilled physical therapy intervention. Intervention strategies resulting in

positive functional improvement included the use of developmental postures for improving the

strength prior to more advanced weight bearing activities such as standing and ambulation, gait

training with a Rifton© pacer gait trainer on a treadmill and overground for improved mobility,

pharmaceutical management for increased ROM, and adaptive equipment such as a Rifton©

tricycle for therapeutic exercises and motor planning.

A true comparison of the results in this case report to those discussed in other studies is

difficult. Research regarding motor outcomes varies largely upon the etiologic cause of the

intractable seizure activity that lead to a child undergoing a hemispherectomy. A majority of the

literature discusses motor outcomes specific to improvement or worsening of a child’s

hemiparesis post hemispherectomy. There is little available, to the authors knowledge, that

discusses specific quantitative outcomes such as strength, gait performance, and balance of these

23
children following physical therapy intervention. The utilization of developmental postures, gait

training, and balance training did result in objective improvements for the child in this case

report. Although quantitatively progress appeared minimal, the quality and consistency of the

child’s movements improved largely. The child’s mother also reported improvements

participation, alertness, and engagement. It is unclear whether the increases in participation,

alertness, and engagement are from improvements in mobility or directly related to the reduction

in seizure activity; however, research does show positive correlations between increased mobility

and quality of life, including participation and social engagement. 29

Limitations

One of the biggest questions in this case report is that whether or not the child herself felt

that she had made any progress over the course of treatment. All outcomes in this case report

were objectively observed and documented by the physical therapist and clinical instructor or

subjectively reported from the mother of the child. Presumptions were made based upon facial

expressions, vocalizations, participation, and the mother’s interpretations of what the child’s

behaviors meant to guide progress or regression of interventions. A significant limitation noted

in this case report is also the frequency of physical therapy. Due to the child’s insurance

coverage and the distance that her family lived from the outpatient clinic, the child and her

mother were only able to come to therapy twice weekly despite recommendations for 3-4 weekly

sessions. Research shows that in order for neuroplasticity to occur, therapy must be performed

frequently and at a high intensity25 and unfortunately, these recommendations were not able to be

completely met in the physical therapy management of this child. Another important

consideration is that although the child did make notable progress in various areas throughout her

course of treatment, the improvements seen in postural endurance, sitting balance, and core

24
strength may not be solely a result of physical therapy intervention as the child was also

receiving outpatient occupational therapy for 2 hours weekly along with school occupational and

physical therapy. It should be noted that carry over of the results of this case report to other

children with intractable epilepsy and/or hemispherectomy should be done with caution as

clinical presentation and impairment severity largely carries and spectrum of achievable

functional outcomes is broad.

Future Research

Further research addressing the specific frequency and intensity of physical therapy

intervention with this population should be completed. This information would be invaluable in

the rehabilitation of children post hemispherectomy. Specific guidelines and protocols may be

difficult to establish based upon the wide variety of clinical presentations seen in children who

undergo a hemispherectomy for management of intractable epilepsy, however, it would provide a

guideline for therapists to reference when treating individuals matching the appropriate criteria.

25
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28
Table 1
Medications and Administration Instructions
Medication Administration instructions
albuterol 1 puff every 4 hours PRN via inhalation mask

cannabidiol 2.5 mL BID

cetirizine 5mg by g-tube daily

vitamin D3 1000 units by g-tube daily

diazepam 7.5mg-12.5mg rectally PRN

clonazepam 0.125 mg PRN

everolimus 5mg

felbamate Alternate 300mg and 450mg BID

fluticasone propionate 1-2 sprays daily

glycerin suppository 1 suppository PRN

lansoprazole 1 capsule (30mg) daily

lysine 250mg by g-tube

midazolam 9mg divided between nostrils PRN for seizures longer than 3
minutes

multivitamin with iron 1 tablet daily

oxcarbazepine 5.5mL BID

perampanel 4mg by t-tube

taurine 500mg

vigabatrin 750mg orally QID

† PRN = as needed, BID = two times a day, QID = four times a day
Table 2
Range of Motion, Muscle Length and Flexibility Findings at Initial Evaluation
Range of Motion (passive) Right Left

Hip Flexion WFL WFL

Hip Extension -5 degrees (from neutral) -6 degrees (from neutral)

Hip Abduction 30 degrees 30 degrees

Hip Adduction WFL WFL

Hip Internal Rotation WFL WFL

Hip External Rotation WFL WFL

Knee Flexion WFL WFL

Knee Extension WFL WFL

Ankle Dorsiflexion 12 degrees 18 degrees

Ankle Plantarflexion WFL WFL

Muscle Length/Flexibility Right Left

Hip Flexors -5 degrees (from neutral) -6 degrees (from neutral)

Hamstrings 130 degrees 130 degrees

Gastrocnemius 8 degrees 5 degrees

† WFL= within functional limits

Table 3
Terminology for Transfer or Ambulation Assistance19
Level of Assistance Definition
Dependent The patient required total physical assistance from one or
more persons to accomplish the activity safely, special
equipment or devices may be used.

Maximal assistance The patient performs ≥75% of the activity; assistance is

required to complete activity

Moderate assistance The patient performs 50-74% of the activity; assistance is

required to complete activity.

Minimal assistance The patient performs 25-49% of the activity; assistance is

required to complete activity.

Contact guarding assistance The caregiver is positioned close to the patient with
hands on the patient or a gait belt; patient requires
protection during the performance of the activity.

Standby (supervision) assistance The patient requires verbal or tactile cues, direction, or
instructions from another person positioned close to, but
not touching, the patient to perform the activity safely
and in an acceptable time frame; the assistant may
provide protection in case the patient’s safety is
threatened.

Assisted The patient requires assistance from another person to

perform the activity safely in an acceptable time frame;
physical assistance, verbal or tactile cues, direction, or
instruction may be used

Modified independent The patient performs 25-49% of the activity; assistance is

required to complete activity.

Independent The patient can perform a transfer without any type of

verbal or manual assistance
Table 4
Short Term and Long-Term Goals
Short Term Goals: Goal Met
1. Child will maintain short sitting posture for at least 2 minutes without upper Week 4
extremity support and no more than CGA to promote functional sitting for
ADL’s and play activities.

2. Child will perform a sit to stand transition with bilateral hands held and Week 8
minimum assist to promote lower extremity strength for functional mobility.

3. Child will independently maintain short sitting posture for at least 2 minutes on a Week 12
dynamic surface without upper extremity support to promote functional sitting
for ADL’s and play activity.
4.
5. Child will perform a standing pivot transfer from various surfaces with no more Week 16
than min assist bilaterally to promote functional transitions and ability to assist
parents in transitioning into/out of adaptive equipment.
6.
7. Child will perform tall kneeling activity at a bench for a total of 5 minutes with Week 16
no more than CG to promote hip extension strengthening for standing and
walking.

8. Child will achieve 150 degrees of bilateral hamstring length in the supine 90/90 NM
position to promote improved functional mobility with gait and transfers.

9. Child will demonstrate neutral to slight external rotation of bilateral lower NM

extremities during at least 50% of time spent in gait trainer wit no more than mod
assist to promote gait efficiency.

Long Term Goals:

1. Child will be able to walk forward 10 feet while in a gait trainer and provided Week 12
with moderate assistance to promote mobility and explore her environment.

2. Child will be able to maintain standing for at least 2 minutes at a support surface NM
with upper extremities supported ad up to CGA to promote LE strength and
endurance during transfers.

3. Child will perform a sit to stand transition with bilateral hands held and min Week 16
assist for at least 2 minutes to promote lower extremity strength and functional
mobility during transfers.

† Goals described above are those set for the child throughout her entire plan of care
a
NM= goal not met during the course of the case report
Table 5
Outcomes for Functional Transitions/Transfers and Required Assistance
Transition Initial Week 4 Week 8 Week 12 Week 16
Standing pivot Maximal Moderate Moderate Moderate Minimal
transfer
Sit to/from Maximal Moderate Moderate Minimal Assisted
stand
Floor to sit Assisted Independent Independent Independent Independent

Sit to quadruped NT Dependent Maximal Maximal Moderate

Short kneeling NT Maximal Moderate Minimal Assisted

to tall kneeling
Floor transfer Maximal Maximal Maximal Maximal Maximal

Supine to prone Independent NT NT NT NT

† NT= not tested

 Hamstring Length (in degrees)
170

160 162
154
150 151
145 145
Degrees

140
137 137
133
130 130

120

110

100
Initial 4 8 12 16
Progress (by week)

Right Hamstring Left Hanstring

Figure 1
Hamstring length is shown here over the course of treatment. The x-axis represents performance
at each progress period reassessment and is reported in weeks.
 6 Minute Walk Test Perfomrance (in feet)
450
426
400
Distance walked (in feet)

350
300 292
250 253
200
150
100
50
0 0 0
Initial 4 8 12 16
Progress (by week)

6MWT

Figure 2
The 6 Minute Walk Test was performed with a Rifton© pacer with a saddle seat and bilateral UE
support. No assistance was provided by the physical therapist or physical therapist student for
forward propulsion. The distance that the child walked was reassessed every 4 weeks during
progress reports.