Epilepsy Surgery Handbook
care The skill to heal. The spirit to
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INTRODUCTION
Introduction Who is referred to the Epilepsy Surgery Program? ou want us to consider Y brain surgery?! hat can epilepsy surgery do W to help my child? Who benefits from surgery?
Introduction Your child has been referred to the Comprehensive Pediatric Epilepsy Center at Florida Hospital for Children because his/ her seizures have not responded to more than two antiseizure medications (AEDs). We understand that having your child “fail” several of these medications and continue seizing can be very difficult. Families tend to worry about potential injury, changes in their child’s cognitive function and side effects from increasing doses of medication. In the pages that follow, we will try to explain why your child is here and what we may be able to do for him/her. INTRODUCTION | 3
severity for a month to several months or even a year or two, but that the benefits will not be long-lasting. When medical treatment with anti-seizure drugs fails, epilepsy surgery may be a good treatment option rather than trying more anti-seizure drugs. This is what an epilepsy surgery evaluation is all about.
You want us to consider brain surgery?! We know that the thought of epilepsy surgery can be a scary and big decision for your family. Our dedicated epilepsy surgery team is here to help you through this process. The first step in the process will be testing and gathering more information about your child and his/her Comprehensive Pediatric Epilepsy Center Team A glossary has been included in the appendices, to help explain epilepsy and surgical terms. Please refer to it as you read along to help you better understand the details of the epilepsy surgical process.
epilepsy. After results are returned and reviewed by our team experts, then your child may be considered as a surgical candidate in the second step of the process. The third step would be the determination of a specific surgical procedure to best help your child. We realize that your child and entire family may have thoughts, concerns and questions throughout this several-month process, and we are ready and willing to
Who is referred to the Epilepsy Surgery Program?
help you.
Epilepsy is called “intractable” or “drug resistant” when a child has
one hemisphere of the brain, left or right, but not both. This is called
failed two anti-seizure medications that have been maximized by
seizure lateralization. The location of the seizure focus, or center, must
increasing doses to a therapeutic level. It does not include medications
be identified in one or more lobes of that hemisphere.
that may have been stopped due to drug reactions, allergies or intolerable side effects.
Surgery for intractable epilepsy is a voluntary or elective procedure. It can be considered when seizures are thought to be coming from
Most families, as we have discussed, consider surgery when they have failed at least two anti-seizure medications (AEDs). The seizures are
Research shows that children with intractable epilepsy will continue
usually frequent enough and/or severe enough to greatly affect the
to “break through” other AED drug treatment regimens after a short
child’s ability to function at his/her best.
or long “honeymoon period.” This means that a particular medication or combination of medicine may help your child’s seizure frequency or
4 | INTROD UCT I ON
INTRODUCTION | 5
What can epilepsy surgery do to help my child? E
May reduce the risk of falls or injuries from seizures
E May
aid in your child’s development, helping him/her in school and
in everyday activities of life
Who benefits from surgery? Surgery may prove a beneficial option for children with: E Simple
partial seizures
E Partial
partial seizures
seizures with
secondary generalization E “Drop”
seizures
Usually the best surgical outcomes happen when the test results show seizure activity in only one hemisphere and in a specific lobe(s) or location(s) of the brain. The goal of the epilepsy surgery team is to remove the area(s) of seizure focus without creating any motor or language problems for your child. By “motor” we mean the movement of your child’s arms, hands, legs and feet. “Language” refers to your child understanding what is said to him/her as well as being able to speak in words. 6 | INTROD UCT I ON
How does the Epilepsy Center for Kids work? eet the Epilepsy M Surgery Team Physicians Social Work Pastoral Care Physical Rehabilitation Facilities
PROGRAM OVERVIEW
E Complex
Program Overview
Program Overview The Epilepsy Center for Kids is part of the Comprehensive Pediatric Epilepsy Center practicing at the Walt Disney Pavilion at Florida Hospital for Children. Our epilepsy surgery team works hard to stop or lessen your child’s seizures with surgical treatment. We also hope to improve the quality of life for your child and family.
How does the Epilepsy Center for Kids work? Our expert team will create an individual treatment plan for your child. It is a step-by-step plan that is designed specifically for your child. The epilepsy surgery team will work hard to be there for your PROGRAM OVERVIEW | 9
child and family through all steps of the process. We consider you and
The epilepsy surgery team knows that having a child with intractable
your family part of our team and will work with you to obtain the best
epilepsy affects the whole family. Each team member will treat your
outcome for your child.
child’s needs, and those of your family, with compassion and respect.
Our experienced team will handle your child’s medication needs and seizure control following the initial visit to the Epilepsy Center for Kids. We will assist you with medicine changes, medication refills and problems with seizure control throughout the evaluation, surgery and post-operative period. During these few months, we will maintain contact with your child’s neurologist. Three to six months after surgery
Our team will listen to your concerns and work together to provide the best care for your child. The goals of our team are to: E Provide
the highest quality of care for your child
E Coordinate
and follow-up with us in the clinic, you can arrange to resume care
E Address
with your child’s primary neurologist. If you need to find a neurologist,
E Attend
the team will make every effort to assist you. If surgery is not an option for your child, our team will meet with you and explain the test results. We will also offer you other possible treatment choices for your child’s specific seizure disorder.
Meet the Epilepsy Surgery Team E Epileptologist
(pronounced “epi-lep-TALL-o-gist”): pediatric
neurologist who specializes in epilepsy E Neurosurgeons E Neuroradiologists
E Physician
assistants, nurse practitioners and registered nurses
E EEG/MEG
technologists
E Child
primary physicians as needed There are members of our team who will support you and your family through this process. Here is a list of support team members, along with a description of their roles and how you can reach them. They include social workers, holistic health specialists, massage therapists and Pastoral Care chaplains.
Physicians
surgery, Dr. Baumgartner is one of our leading experts on seizures, seizure-related conditions neurosurgeon, he works in close collaboration with
workers
10 | PRO G R AM OVE RVIEW
with your child’s school, your work and your child’s
and epilepsy. As a board-certified pediatric
care attendants
Life Specialists
E Communicate
Specializing in minimally invasive and traditional
E Pharmacist
E Speech/physical/occupational
to your scheduling needs
Surgical Director of the Comprehensive Pediatric Epilepsy Center
E Pathologists
E Social
your questions and concerns
Jim Baumgartner, MD
E Neuropsychologists
E Patient
your child’s care
other members of our team to treat children and therapists
adolescents, reducing the frequency and severity of seizures and in many cases, eliminating them entirely. PROGRAM OVERVIEW | 11
Dr. Baumgartner is highly regarded in the field of pediatric neurosurgery and has established a legacy of successfully treating his young patients using the most recent advances and proven treatments in medicine, including surgeries that leave little to no scarring. This includes the use of state-of-the-art diagnostic and surgical technologies such as the 3T MRI that allows the brain to be scanned in real time during surgery. Known as the “Operating Rooms of the Future” these surgical suites increase the accuracy of the procedures and produce more positive patient outcomes. Dr. Baumgartner treats a wide range of disorders and conditions, including petit mal, grand mal, tonic, myoclonic, atonic and partial seizures. Education and Experience After earning his medical degree from the University of Michigan in
Jim Baumgartner, MD, in the “Operating Rooms of the Future”
Ann Arbor, he served his surgery internship and neurosurgery residency at the University of California, San Francisco. He also completed his
advanced technologies, such as the 3T MRI, which can provide real-
fellowship in pediatric neurosurgery there.
time feedback of the brain during surgery, greatly improving outcomes.
Ki Hyeong Lee, MD, MS
Education and Experience
Medical Director of the Comprehensive Pediatric Epilepsy Center
Dr. Lee is a graduate of Seoul National University College of Medicine in Korea, where he earned his medical degree. He went on to serve his pediatrics internship and residency at the Medical College of Georgia
One of the leaders in pediatric epilepsy and seizure
in Augusta. Dr. Lee served his epilepsy research fellowship at the
diagnosis and treatment in the country, Dr. Lee
prestigious Mayo Foundation and his clinical neurophysiology fellowship
directs a team of specialists at the Comprehensive
at the Medical College of Georgia. He also served a stroke fellowship
Pediatric Epilepsy Center to treat a wide range of epilepsy and seizure-
at Seoul National University Hospital and was associate professor at
related diseases and conditions. Through his efforts and those of his
the University of Cincinnati’s Department of Neurology and Pediatrics
colleagues, many of our patients are able to live a seizure-free life.
before coming to Florida Hospital for Children.
Dr. Lee is a renowned expert in epilepsy and has successfully treated hundreds of children, either reducing the incidences of seizures or eliminating them entirely through groundbreaking approaches to the diagnosis and treatment of these disorders. Many of these utilize highly 12 | PRO G R AM OVE RVIEW
PROGRAM OVERVIEW | 13
Social Work Coming into the hospital can be stressful. Some of the questions we hear from families include: E “Where E “Do
will my spouse and I sleep during my child’s hospital stay?”
we have the finances to make this trip?”
E “Will
anyone be there to provide emotional support?”
E “Can
someone help me with paperwork to allow for time off from
work?” E “Is
there someone who can help us talk to the school?”
The team’s social worker can help you with these and other questions that may come up during your child’s hospital stay. The social worker is trained to: E Listen E Find
to your needs and concerns and offer support
resources for use when your child is hospitalized and also near
your home after your child is discharged E Serve
as an advocate for you and your family
Our social worker will first meet with you early on in the epilepsy surgery evaluation process. He/she will continue to support your family during your child’s admission for testing, surgery and recovery after surgery.
Pastoral Care
traditional medical treatment. As a result, Florida Hospital is a leader in whole-person health—mind, body and spirit. Each of our compassionate and caring chaplains is a trained professional, an integral member of Florida Hospital’s healing team. They are not only sensitive to the medical, emotional and spiritual needs of our patients, but their family and friends as well. Our chaplains invite meaningful and healthy use of an individual’s spiritual beliefs and resources in the midst of an illness or crisis. Pastoral Care is fully integrated into the treatment program at Florida Hospital. Our chaplains: E Receive
referrals from physicians and nurses
E Participate E Enter
in interdisciplinary care conferences
their services into the medical record
E Provide
support to patients, family and staff 24 hours every day
E Provide
a bridge to community clergy as needed
At the core of Pastoral Care is our belief in a God who cares and wants to support us in our daily walk. As representatives of God, our chaplains stand ready to assist you in your walk. We can provide assistance 24 hours a day, seven days a week. Just ask your nurse for assistance or call the hospital operator and ask for the chaplain on call.
Physical Rehabilitation
Chaplain Services
The physical rehabilitation team will evaluate your child at some
We believe prayer and spiritual guidance can have a profound impact
including physical therapy, occupational therapy, speech-language
on healing and helping individuals in time of need. To provide comfort
therapy and recreational therapy. They can give you a realistic picture
and support, Florida Hospital has chaplains on duty 24 hours a day,
of what the loss of function will mean for your child and your family.
seven days a week. Our chaplains understand the importance of
Following surgery, these specialists will help you arrange outpatient
faith and prayer for healing, and spiritual interventions complement
therapies to continue at home. In some instances, your child may
14 | PRO G R AM OVE RVIEW
point during your admission. They will discuss possible therapies,
PROGRAM OVERVIEW | 15
need to participate in an off-site inpatient rehabilitation program. Inpatient rehabilitation may be needed to help your child gain strength and function in his/her motor, speech and/or functional abilities. A dedicated team of physical therapists, recreational therapists, occupational therapists, physical therapists, nurses, social workers and
The First Step: Clinical Evaluation What will happen at the first office visit? What if surgical evaluation is recommended for my child?
others will assist your child to meet his/her goals. You will be part of a
Phase One Evaluation
team meeting to plan for your child.
Hospital Admission for Hospital Evaluation
Downtown Orlando (Pediatrics)
Celebration
615 East Princeton Street, Suite 104
400 Celebration Place,
Orlando, FL 32803
Suite C200
(407) 303-1575
Celebration, FL 34747
East Orlando 7975 Lake Underhill Road, Suite 345 Orlando, FL 32822 (407) 303-8626 16 | PRO G R AM OVE RVIEW
(407) 303-4003
CLINICAL EVALUATION
Florida Hospital for Children Outpatient Pediatric Rehabilitation Facilities
The First Step: Clinical Evaluation What will happen at the first office visit? Prior to your initial visit, a member of our nursing staff will get a detailed history regarding your child. During the initial office visit, the epileptologist and/or nurse practitioners will ask you questions and examine your child. We will: E Compile
a complete past medical, family and seizure history for
your child E Review
any testing your child had done before, like EEGs, MRIs,
genetic or metabolic testing You may also meet some other members of the team, including our nurse and social worker. At the end of the visit, the team will talk with you about recommendations for testing and treatment.
What if surgical evaluation is recommended for my child? If surgical evaluation is recommended, a five-day hospital stay will be scheduled in our Epilepsy Monitoring Unit (EMU). This admission is called a Phase One Evaluation. During this evaluation, your child will have a series of tests. These tests will help the team: E Identify E Locate
the type(s) of seizures your child is experiencing
the seizure focus
E Determine
if surgery is a good option for your child and family
Prior to the hospital stay, a member of the epilepsy surgery team’s nursing staff will call you to discuss your child’s seizures and related THE FIRS T S TEP | 19
Phase One Evaluation Neuropsychological Evaluation Neuropsychological testing is ideally done during admission to the EMU. Testing results are necessary before your child’s case can be presented during an epilepsy surgery case conference. Testing is done by the epilepsy team’s neuropsychologist(s), or the program technician. What Will Be Done: A neuropsychological evaluation includes an interview with parents about the child’s history, observation and interview with the child, and cognitive testing. While the child is answering questions, or working on the computer, parents will fill out questionnaires about their child’s development and behavior. A neuropsychological evaluation is like a “school day,” in that children are asked to work individually with the neuropsychologist(s), except for very young children. During the examination, you will be asked to leave the room to minimize distractions while your child is working. anti-seizure medications (AEDs). Depending on how frequent and
Length of Evaluation: The time required to complete testing depends
severe your child’s seizures are, the AEDs may be reduced or stopped
on the child’s age. Typically, it takes between three to six hours for
altogether shortly before your child comes into the hospital. It is very
school-aged children, and it can take one to two hours for those with
important that you feel comfortable with any medication change
significant cognitive challenges or those in preschool.
suggested by the team. As soon as adequate seizures are captured
How We Can Help: We evaluate your child’s brain functioning
during the monitoring, your child will be restarted on his/her AEDs.
by testing abilities such as IQ, language, visual-spatial skills,
If needed, he/she will also be given other anti-seizure medications
memory, problem-solving, motor skills and behavioral functioning.
to help prevent or stop seizures until your child’s regular AEDs are
Understanding where your child is functioning currently may help
working again.
identify brain areas that are involved. The neuropsychologist will work with your physicians to combine results from medical tests, such as brain imaging or blood tests, to help diagnose your child’s problem and help plan interventions. Test findings will help you and your child’s school, therapists and doctors provide treatments and interventions for your child that will meet his or her unique needs.
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THE FIRS T S TEP | 21
Testing is done to obtain a baseline against which to measure the
testing may need to be completed as an outpatient. We will work with
outcome of treatment (new medications and/or surgery). If your child
you and your insurance to provide the most efficient care for your
is determined to be an epilepsy surgical candidate, neuropsychological
child.
testing will be repeated at regular intervals to help monitor your child’s developmental and academic progress.
Video Electroencephalogram (Video EEG)
Testing results will be communicated to you, your primary
Purpose: The video EEG recording is a painless test that records the
neurologist and our team by the neuropsychologist. You will receive
electrical activity associated with seizures.
a neuropsychological report that you can share with school personnel and his/her therapists.
Length of Test: During the week-long hospital stay, generally from Monday to Friday, electrodes will be attached to your child’s scalp
What You Need to Bring: If your child has had a neuropsychological
for video EEG recording in his/her room. He/she will be able to move
evaluation or academic testing in the past, please provide a copy of
about the room and go to the bathroom, but will not leave his/her
the results to our team. A copy of an Individualized Educational Plan
room except to go for scheduled tests.
(IEP), if appropriate, from recent years would also be helpful.
Hospital Admission for Phase One Evaluation The Epilepsy Monitoring Unit (EMU)
Description: E Our
EEG technicians will place a set of electrodes on your child’s
scalp. The EEG technicians continuously monitor your child’s wave patterns and seizures. They will work with the nurses and the epileptologist to capture seizures and regularly evaluate findings. E A
cap is placed over the electrodes after they are attached. The
Your child will be admitted to the EMU for a varying period of time
wires from the scalp electrodes make a “rope” that connects to a
dependent on your child’s individualized care plan. The patient will
small backpack. Wires are also attached to the wall behind your
be in a private room. A parent, guardian or extended family member
child’s bed. Your child can place the backpack on the bed or carry
identified by the parent who is able to identify your child’s seizures
it around the room when he/she needs to get up.
will need to stay with the child throughout the hospital stay. You may
E A
small camera on the ceiling of your child’s room allows us to
find it helpful to have two family members present for all or part of the
record your child’s behavior and movements on a video during
week, so as to provide breaks for one parent. Please notify our office if
seizures. It is helpful when your child is having a seizure if you do
the appointed guardian is pregnant or planning on becoming pregnant.
not block the camera. Please turn on the overhead light during a
Alternate arrangements may need to be made during the period of some
nighttime seizure, and remove any blanket that may be covering
of the testing.
your child to allow our technicians and doctors to see clinical
Testing During the Phase One Evaluation
activity occurring during the seizure. The EEG technicians and
Your child should expect to have any or all of the following procedures
how your child’s actions and behavior are related to the electrical
during his/her stay on the EMU. Depending on insurance, some of the
activity seen on the EEG.
22 | THE FIR S T S T E P
epileptologists will review the recordings of wave patterns to see
THE FIRS T S TEP | 23
Description: MRI is a painless test that uses large magnets, radio waves and a computer to make a detailed picture of structures inside the brain. The team typically uses a special MRI, called a 3T MRI, to increase details and better define structures. A common comparison would be a high-definition television compared to a regular television. Length of Test: MRI testing will take approximately one hour. Other Information: E Because
the MRI creates a strong magnetic field, please inform
us if your child has any health-related metal devices (pacemaker, vagal nerve stimulator, metal plates, oral or body braces). You will E The
nurses and EEG technicians check the electrodes regularly to
make sure none have come loose. If they do, the EEG technicians will replace the electrodes quickly so that the recording can continue. E The
EEG technician removes the electrodes on the morning your
child goes home. You can then wash his/her hair. Other Information: Your child may be sleep-deprived one or two nights
also need to remove any of your child’s jewelry or other metal objects such as barrettes, eyeglasses, dental pieces, hearing aids or body piercings before the test. E During
the MRI, it is important that your child lie very still. The
nurse may give your child a sedative if he/she is unable to lie still on his/her own. This may be given intravenously (through a needle inserted in the arm), or nursing staff may give it by mouth. E You
may accompany your child to the test. The MRI staff will be
during the hospital stay in order to capture clinical seizures. This may
in a room, near your child, and can talk with your child through a
be especially valuable if fatigue or being overtired can bring on your
speaker and be able to hear what he/she says.
child’s seizures. With sleep deprivation, the epilepsy surgery team will encourage your child to nap during the day. Nursing staff, EEG technicians and you will work together to help your child stay awake for the determined time period at night, if needed, to obtain seizure activity.
3T-Magnetic Resonance Imaging (MRI) Purpose: These MRI scans will determine any irregularities in your
Single Photon Emission Computed Tomography (SPECT) Purpose: Ictal/interictal SPECT scans can show areas of increased brain activity (seizures) related to increased blood flow to these area(s). These scans show a bright white or red flare, highlighting area(s) responsible for causing seizures.
child’s brain structure that may help explain his/her seizures. They
Description: This test is completed in two individual parts: the ictal
can be very helpful in locating area(s) of the brain that include the
scan and the interictal scan. These scans are combined to give one
seizure focus or origin. The MRI can also identify any evidence of tissue
final image and result.
scarring, birth malformations, past infections, lesions or tumors.
Ictal SPECT is done while a seizure is occurring.
24 | THE FIR S T S T E P
THE FIRS T S TEP | 25
E Preparation:
Preparations may be necessary if your child needs
E The
radioisotope, technetium, is injected into your child’s vein
sedation, including holding food for several hours prior to the test.
through the IV, between seizures. This procedure may be done
This will be discussed ahead of time to determine what is best for
during the week of testing or as an outpatient, after the Phase
your child and family.
One Evaluation.
E If
there is something that contributes to your child having a
If no seizure occurs during the testing time for the ictal SPECT, your
seizure, our nursing/EEG and Child Life Specialists can try to
child will be sent to get the interictal SPECT scan. In this case, he/she
provide that stimuli during this test (i.e., flashing lights, sounds,
may need to return to the hospital for a second admission to attempt a
physical activity or lack of sleep).
second ictal SPECT. If this is necessary, our scheduler will help arrange
E A
nurse from the EMU will start an intravenous (IV) line in your
child’s arm prior to the test. A nuclear medicine technologist will sit bedside in your child’s room during the entire test. Your child should expect minor to moderate discomfort while the IV is being put in place. E At
this retest if necessary. Length: The interictal SPECT scan typically lasts 30 to 40 minutes.
Positron Emission Tomography (PET) Purpose: Positron Emission Tomography (PET) is a test that measures how the body uses blood sugar (glucose) within brain cells. Blood sugar
the start of your child’s seizure, the technologist will inject a
acts like food for our brain. This test can help our epileptologist see
radioisotope called technetium into your child’s vein through the
chemical changes taking place in the brain and highlight areas in which
IV. This radioisotope will not cause seizures. It will travel to the
seizures may be active.
area of your child’s brain that has the most blood flow. The area of increased blood flow is often related to the seizure focus area. After your child’s seizure is controlled, he/she will have an ictal
Description: E Your
child may need medicine to help him/her lie still on the
scanning table.
SPECT scan. Length of Test: The ictal SPECT test usually takes five to six hours to complete. Most of this time, your child is in his/her room on the EMU, waiting for the seizure to occur. He/she can sleep or do quiet activities in bed. He/she will then be taken to another hospital floor for one of the SPECT scans (ictal or interictal), which will take less than an hour
E He/she
will have EEG leads attached to the scalp prior to the scan
to monitor for seizure activity. E During
the test, a nurse will place a small amount of sugary liquid
into your child’s vein through an IV. E The
PET scanner “maps” an image of the brain, showing where
chemical activity (with the blood sugar) is taking place.
to complete. Interictal SPECT is a baseline study done between seizures as an in- or
Length of Test: The PET scan takes approximately one hour. Your child
outpatient.
will need to keep totally still during this time. A Child Life Specialist
E Preparation:
Your child will be lying comfortably on a table with
his/her head held in a headrest. There is no pain during the scanning. 26 | THE FIR S T S T E P
may be used for preparation and support during this test as needed. Getting Results: E The
PET scan will be reviewed by a physician who specializes in THE FIRS T S TEP | 27
reading the PET scan and the epileptologist. E Final
results of the PET scan will not be available until all Phase
One testing is completed. The data from the PET scan and all the
child is unable to lie still on his own, he/she may be given a slight sedative. E At
the beginning of the test, your child will be drowsy or asleep.
other tests must be compiled and reviewed by the epileptologist
Later in the test, he/she will be awake and asked to perform
and epilepsy surgery team during the epilepsy surgery conference
tasks such as reading from a book, looking at pictures or watching
approximately two to three weeks after all tests have been
videos.
completed.
Magnetoencephalography (MEG) Purpose: MEG is one of the newest, non-invasive tests available for
Getting Results: E The
epileptologist will review the MEG recordings with the
specialists who perform this test. E Final
results of the MEG scan will not be available until all Phase
studying epilepsy and recording brain activity. MEG provides additional
One testing is completed. The data from the MEG scan and all the
accurate and reliable information about location of the brain’s motor,
other tests must be compiled and reviewed by the epileptologist
sensory and language areas. It also can be very helpful in locating
and epilepsy surgery team during the epilepsy surgery conference
area(s) of seizure activity.
approximately two to three weeks after all tests have been
Description: MEG gives an accurate picture of brain activity by measuring small magnetic fields produced by small electrical currents starting inside the brain cells. These magnetic signals cause much less distortion than electrical signals, which can be affected by skull and tissue overlying the brain. Length of Test: It may take up to two hours. Other Information: E For
this test, it is important that your child does not wear any
completed.
Functional Magnetic Resonance Imaging (fMRI) Purpose: The fMRI is an additional test that can be done as an outpatient after the Phase One Evaluation hospital admission. It is not needed for each child being evaluated for epilepsy surgery. A member of the epilepsy surgery team will let you know if this test is needed to complete your child’s evaluation.
metal objects such as watches, necklaces or earrings. If possible,
If a child’s seizure focus, from the results of the Phase One testing,
have your child wear clothing for the test that has no metal snaps
indicates that it may be near his/her motor or sensory area, the fMRI
or zippers.
may be an important test to consider. It can help determine if brain
E If
your child has any health-related metal devices (pacemaker,
VNS, metal plates, oral or body braces), please let a nurse know prior to or at the start of your child’s hospital stay. In cases where metal cannot be removed, the MEG may not be able to be done. E The
room where the MEG test is performed will be quiet. During
the procedure, it is important that your child lie very still. If your 28 | THE FIR S T S T E P
tissue, in the area of seizure focus, can be removed safely without affecting your child’s ability to move his/her limbs, use language or obtain sensory input. Description: To do the fMRI, your child will be asked to follow instructions, identify pictures and read if he/she is able to do so. If a child is too young (i.e., under age six), has significant developmental THE FIRS T S TEP | 29
delay or is nonverbal, this test will not be used.
E Final
results of the WADA test will not be available until all Phase
Length of Test: The test may take two to four hours, but it can vary
One testing is completed. The data from the WADA and all the
depending on how well your child can answer questions and follow
other tests must be compiled and reviewed by the epileptologist
directions.
and epilepsy surgery team during the epilepsy surgery conference
Getting Results: E The
fMRI will be read by a trained radiologist who specializes in
helping children with intractable epilepsy. E Final
results of the fMRI scan will not be available until all Phase
One testing is completed. The data from the fMRI scan and all the other tests must be compiled and reviewed by the epileptologist and epilepsy surgery team during the epilepsy surgery conference approximately two to three weeks after all tests have been completed.
approximately two to three weeks after all tests have been completed. Each of the Phase One tests is necessary for complete assessment of your child’s seizures and very precise determination of the seizure focus. If the epilepsy surgery team is unable to get the needed results on any of these tests, this may require your child’s return to the EMU for an additional hospital stay or for outpatient testing. If your child must return to the EMU, expect these hospitalizations to be between three and five days. We attempt to keep these return stays as brief as possible.
The WADA Test
As research and technology progress in regard to epilepsy surgery, it
Purpose: The WADA test is used for similar purpose as the fMRI. This
may be found that only a few tests are needed to identify the seizure
test is used to provide information regarding seizure focus proximity to
focus. At present, however, the redundancy from each of the tests
key language or memory areas. It may be ordered when a child cannot
just explained is vital to accurately identify the seizure focus and to
perform the fMRI.
develop an exact, personalized plan for your child.
Description: If your child needs this test, we will discuss test specifics
Laboratory Tests
and instructions. Similar to the fMRI, the WADA test requires children to be able to follow simple directions and read. It requires meeting with the interventional radiology team prior to administering the test. This appointment will also involve discussion of the WADA’s risks and benefits. Length of Test: This test may take four or more hours. It can vary depending on how well your child can answer questions and follow directions. Some children may need to stay for almost a full day to complete the test. Getting Results: E The
WADA test will be reviewed by a trained radiologist who
specializes in interventional radiology. 30 | THE FIR S T S T E P
In some patients, various blood tests may be performed for metabolic or genetic workup to either exclude a diagnosis or in an attempt to find the underlying cause of their epilepsy. The blood for these tests can usually be obtained during your admission or trip to the office.
Epilepsy Surgery Conference Once your child has completed all of the necessary tests of the Phase One Evaluation, the epilepsy surgery team will carefully and completely review the data collected. Within a few weeks after completing this extensive evaluation, your child’s history and test results are presented at the epilepsy surgery conference. Approximately 20 to 25 medical professionals including epileptologists, THE FIRS T S TEP | 31
neuropsychologists and social workers gather at this conference to discuss children with intractable epilepsy and your child’s specific case. Our goal as an outcome of this conference is to provide you with the most accurate, specific and individualized plan for your child. You will receive a phone call from a member of the epilepsy surgery team following the conference to set up an appointment to meet with the physicians to obtain your child’s results. Specifics of the testing, notification of the surgical candidacy or discussion of the results will not be talked about over the phone in order to minimize any chance of
Surgical Options and Evaluation: Explanation and Considerations Phase Two Evaluation: Multi-step Epilepsy Surgical Procedures
miscommunication or misunderstanding.
One-step Epilepsy Surgery Procedures
During this appointment, you, your child and any family members
Corpus Callosotomy
will meet with members of the epilepsy surgery team to discuss your
Functional Hemispherotomy
child’s: E Complete
Phase One Evaluation results
E Recommendations E Surgical
from the epilepsy surgery conference
procedure, details, risks and benefits
The epilepsy surgery team and other specialists will have time during your meeting to address any questions/concerns/fears you may have. You are encouraged to talk with the epilepsy surgery team nurses, email us or set up an additional clinic appointment. We will be happy to answer your questions or discuss specifics regarding the surgical recommendations.
Vagal Nerve Stimulator Surgery Returning Home
SURGICAL OPTIONS
neurosurgeons, nurse practitioners, nurses, radiologists,
Surgical Options and Evaluation: Explanation and Considerations The following sections have information about the different types of epilepsy surgery. If your child is a surgical candidate, epilepsy surgery may involve a multi-step procedure or a one-step procedure. The physicians will explain details and rationale for a particular type of surgery. Due to the complex nature of the test results and plan, specifics will not be discussed prior to your child’s clinic visit following the epilepsy surgery conference.
Phase Two Evaluation: Multi-Step Epilepsy Surgical Procedures A Phase Two Evaluation may be suggested as your child’s best surgical option for seizure freedom or seizure reduction. Unlike Phase One Evaluation, Phase Two Evaluation does involve surgery. You may expect to be in the hospital for seven to 10 or more days. The neurosurgery team will be able to give you a more specific approximation for your child and family.
Step One of Phase Two Evaluation: Electrode Grid Placement Description: The first part of a Phase Two Evaluation involves a detailed surgical procedure in the operating room. The neurosurgeon and the epileptologist work together to place electrodes on the brain surface, close to where the seizure focus is suspected based on the Phase One test results. SURGICAL OPTIONS AND EVALUATION | 35
Invasive testing, during surgery, may be necessary for your child to
have a conference with the epileptologist and neurosurgeon to
confirm the seizure focus and identify seizures prior to any surgical
review the plan. You and your child, if your child is old enough,
resection. Results from Phase Two testing will be compared with the
will have the final decision regarding surgical resection for your
results of those compiled from Phase One testing. You can expect the
child’s epilepsy.
electrode grids that were placed on your child’s brain during surgery to remain in place for several days or more. This helps to monitor electrical activity on your child’s brain. Following the grid placement, your child will go to the Intensive Care Unit (ICU), where the epilepsy surgery team will start to monitor electrical activity received from the electrode grids. They will also monitor his/her clinical seizures to specifically define and confirm the area of the seizure focus. The implanted electrodes will remain in place until they are surgically removed during a second surgery, as described below. The goal of the second surgery is to remove the electrode grids and to remove your child’s seizure focus. He/she will not go home with the electrode grids in place. Depending on the frequency of your child’s seizures, while waiting to capture several seizures, the electrodes may be in place for a few days to a few weeks before your child will return to the operating room to have them removed.
Hospital Course Following Step One: E Your
son or daughter will be in the Pediatric Intensive Care Unit
(PICU) to be monitored closely by the medical teams. E Following
his/her stay in the PICU, your child may be moved
to the EMU for the next few days. Your child’s seizure activity will be closely monitored by the EEG technicians, nurses and epileptologists. E Following
grid placement, cortical mapping may be performed.
This will help the team relate seizure location to your child’s key motor, speech or sensory areas. This will take place in your child’s room. E From
seizure and mapping data, a very accurate and individualized
surgical plan can be constructed. Once this is created, you will 36 | SURG I CAL OPT I ON S AND EVALUAT IO N
Step Two of Phase Two Evaluation: Resective Surgery Resective Surgical Treatment Following Electrode Grid Placement and VEEG Monitoring Surgical removal of the seizure focus is the final surgery of a Phase Two Evaluation. This surgery involves the surgical treatment for your child’s intractable epilepsy with the goal of removing brain tissue housing the seizure focus. From the video EEG monitoring of seizures and any “mapping” needed, the surgical margins for recommended brain tissue removal will have been identified. During the second surgery, the electrode strips or grids will be carefully removed and the neurosurgeon will resect the brain cortex that is causing the seizures. This tissue being removed is not functioning normally and has been causing the seizures. Resective surgery can last five to seven hours, similar to the length of the first surgery. Families will get several progress reports during this time from the surgery team in the operating room.
Hospital Course Following Step Two E Your
son or daughter will be in the PICU for at least 24 hours after
surgery to be monitored closely by the medical teams. E Your
child will then be moved to the Step-down Unit and will spend
several days on this unit prior to going home. E Your
child will continue to be monitored for pain, return of
appetite and activity, seizures or infection. SURGICAL OPTIONS AND EVALUATION | 37
E The
sterile head dressing will be removed by the neurosurgery
team one to three days after surgery. E Additional
services may be involved in your child’s care while
on the Step-down Unit. These services could include nutrition, occupational therapy, physical therapy, speech therapy and rehabilitative medicine, to name a few. Some of these therapies could require your child to stay in the hospital for additional time.
One-step Epilepsy Surgery Procedures
the ICU team will create a treatment plan to assist with problem prevention, pain, nausea or vomiting and fluid intake/output.
Functional Hemispherotomy Children with severe, intractable epilepsy due to more widespread brain abnormalities may be candidates for functional hemispherotomy. In functional hemispherotomy, all connections between the left and right brain will be disconnected surgically. Seizures, as a result, cannot generalize or spread to the other hemisphere. Surgical disconnection of the abnormal hemisphere causing seizures can have up to a 75
One-step epilepsy surgeries are different from the Phase Two
percent chance of stopping seizures. An additional 20 percent of
Evaluation surgeries previously discussed. These procedures may be
children will have improvement in lessening seizure frequency or
recommended as your child’s best option for seizure control/reduction
severity. Quality of life may be improved significantly for your child
as determined by his/her history and Phase One Evaluation. Common,
and family. This surgical procedure can last six to eight hours.
one-step surgical procedures for seizure control include: E Corpus
callosotomy
E Hemispherectomy/hemispherotomy E Vagal
nerve stimulator (VNS)
Your son or daughter will be in the PICU for approximately 24 hours after surgery so that the medical teams can closely monitor his/ her progress and offer medical support. The neurosurgery team and the ICU team will create a treatment plan to assist with problem prevention, pain, nausea or vomiting and fluid intake/output.
Corpus Callosotomy
Children who have this procedure will lose significant function in one
A corpus callosotomy is a surgical procedure that may be warranted
arm and leg following surgery. Additionally, they will have some loss of
if your child’s seizures are disabling, if they cause dangerous and
peripheral vision in each eye, but no loss of central vision. Because of
frequent falls, or if they begin on one side of the brain and spread
these unique considerations for families, the epilepsy surgery team will
quickly to the other side. This procedure involves disconnection of
recommend that families consult with the following specialists to assist
nerve fibers along the brain structure between the right and left
you in your decision-making process concerning epilepsy surgery:
hemispheres interrupting the spread of seizures. This surgery generally does not offer a chance for seizure freedom for your child. This procedure takes approximately four to five hours.
E Physical
rehabilitation: The rehabilitation staff can talk to you about
efforts that can be taken following a functional hemispherotomy to help your child regain strength and function to his/her greatest
Your son or daughter will be in the PICU for approximately 24 hours
potential. They will discuss possible therapies including physical,
after surgery so that the medical teams can closely monitor his/
occupational, speech-language and recreational therapy. They can
her progress and offer medical support. The neurosurgery team and
give you a realistic picture of what the loss of function will mean for
38 | SURG I CAL OPT I ON S AND EVALUAT IO N
SURGICAL OPTIONS AND EVALUATION | 39
your child and your family. Following surgery, these specialists will
you in an unbiased way to clarify issues and determine the pros/cons
help you arrange outpatient therapies that would continue at home.
of your child having a functional hemispherotomy.
In some instances, your child may need to participate in an off-site inpatient rehabilitation program. Inpatient rehabilitation may be needed to help your child gain strength and function in his/her motor, speech and/or functional abilities. A dedicated team of physical,
E Psychology:
Having you and/or your child talk with a counselor may
be beneficial to express your feelings and concerns.
Vagal Nerve Stimulator Surgery Placement of a vagal nerve stimulator in the front of your child’s left chest may be a surgical option when respective surgery is not an option for partial or generalized seizures. The vagal nerve stimulator is a small device, much like a heart pacemaker. When surgically placed in the left chest and connected to the vagal nerve in the left side of the child’s neck, it will send electrical impulses to the brain to help prevent seizures. The device can be programmed to send the right amount and timing of electrical current to help control your child’s seizures. Placement of the vagal nerve stimulator is done in a few hours in the operating room.
Ketogenic Diet The Ketogenic diet is a medically supervised high fat, low carbohydrate and moderate protein nutrition plan used to control medically refractory recreational and occupational therapists; nurses; social workers and
seizures. It requires the coordination and expertise of an epileptologist,
others will assist your child to meet his/her goals. You will be part of a
ketogenic registered dietitian, registered nurses, pharmacist and social
team meeting to plan for your child.
worker. The nutrition plans is a precise dietary regime. The exact type and
E Ophthalmology:
These specialists can help to determine if your child
has had any loss in peripheral field vision prior to surgery. This may occur in children who have had significant seizures near the part of the brain that controls the vision. These specialists can also give you data to show what peripheral vision would be lost related to the functional hemispherotomy. Ophthalmology would then follow your child regularly after surgery. E Ethics:
Experts from this group can sit in with you when you meet
with the epilepsy surgery and neurosurgery teams. They will help 40 | SURG I CAL OPT I ON S AND EVALUAT IO N
quantity of foods are determined by the dietitian and require adjustments during the course of therapy to allow for growth and to achieve optimal seizure control. Foods are measured on a gram scale. The child must consume all meals in its entirety in order for the diet to be most effective. In addition, vitamin and mineral supplementation accompany the diet to ensure nutrition adequacy. Fluids are provided at maintenance levels to prevent adverse effects such as kidney stones and constipation. The diet requires careful candidate selection to rule out contraindications to the intervention. The candidate must have a strong support system in order to adhere to this strict regimen. SURGICAL OPTIONS AND EVALUATION | 41
Returning Home The epilepsy surgery team will discuss care of the scalp incision, general pain and activity concerns, epilepsy medications, activity restrictions, follow-up care and anticipated school return during this time. Before discharge, you and your child will receive specific written information and prescriptions about any changes in seizure medications. You will also schedule a post-operative visit with the epilepsy surgery team before leaving the hospital. At this visit you will typically see the neurosurgeon, epileptologist and/or a nurse practitioner. You and your child may have many questions for the epilepsy surgery team prior to discharge. Be assured that the epilepsy surgery, help you get the answers you need. We will also be available postsurgery and at follow-up visits.
Typical Schedule of Return Visits to Epilepsy Surgery and Neurosurgery Scheduled Visit After Surgery
Description of Visit E Neurosurgeon
Two Weeks
and epileptologist will see your
child for wound check and seizure frequency report. E Epileptologist
Six Months
E Child
will gradually transition back to primary
neurologist, based on his/her needs. E Epileptologist
Yearly (for Five Years)
and neuropsychological testing
to evaluate progress made since surgery. These results may be shared with your child’s school to help with coordination of an individualized education plan (IEP).
42 | SURG I CAL OPT I ON S AND EVALUAT IO N
Books
Glossary of Terms
Local and National Epilepsy Resources
Searching for a Cause: Surgical Biopsies and Cortical Dysplasia
Helpful Websites Discussing Pre-surgical Testing and Surgery with Your Child Developmental Considerations for Children School Issues and Re-entry: Planning for/After Surgery Coping as a Family with Upcoming Epilepsy Surgery Frequently Asked Questions
Parent-to-parent Network Parent-to-parent Program Patient Flow Through Epilepsy Surgery
EPILEPSY RESOURCES
neurosurgery and rehabilitative medicine teams will be available to
Epilepsy Resources
Books
Books for Parents and Young-Adult Patients Living Well with Epilepsy and Other Seizure Disorders Author: Carol Bazil Collins Living, 2004 Growing Up with Epilepsy: A Practical Guide for Parents Author: Lynn Bennett Blackburn Demos Medical Publishing, 2002 Epilepsy: Patient and Family Guide Author: Orvin Devinsky Demos Medical Publishing, 2007 Seizures and Epilepsy in Childhood: A Guide (Third Edition) Author: John Freeman, MD Johns Hopkins University Press, 2002 Children with Seizures: A Guide for Parents, Teachers and Others Professionals Author: Martin L. Kutscher Jessica Kingsley Publishers, 2006 Epilepsy: A Guide to Balancing Your Life Author: Ilo Leppik, MD Demos Medical Publishing, 2006 Epilepsy on Our Terms: Stories by Children with Seizures and Their Parents Author: Georgia Montouris Oxford University Press USA, 2007
EPILEPS Y RESOURCES | 45
Books for Children Taking Seizure Disorders to School: A Story About Epilepsy Author: Kim Gosselin JayJo Books, LLC, 1996 Becky the Brave: A Story About Epilepsy Author: Laurie Lears Albert Whitman and Company, 2002 My Friend Has Epilepsy Author: Anna Levene Chrysalis Children’s Books, 2005 Lee the Rabbit with Epilepsy Author: Barbara M. Moss Woodbine House, 1989 Dotty the Dalmatian Has Epilepsy Epilepsy: 199 Answers: A Doctor Responds to Patients’ Questions Author: Andrew Wilner Demos Medical Publishing, 2007 100 Questions and Answers About Your Child’s Epilepsy Author: Anuradha Singh
Author: Tim Peters Tim Peters and Co., Inc., 1994 You and Your Brain: A Child’s Guide Author: Tim Peters Tim Peters and Co., Inc., 2000
Jones and Bartlett Publishers, 2008
Mommy, I Feel Funny: A Child’s Experience with Epilepsy
Books for Teens
Author: Danielle Rocheford
Epilepsy: The Ultimate Teen Guide
Let’s Learn with Teddy About Epilepsy
Author: Kathlyn Gay
Author: Yvonne Zelenka, MD, and Melissa Leyton
The Scarecrow Press, 2007
Medicus Press, 2008
Green Swings, 2009
Young People and Chronic Illness: True Stories, Help and Hope Author: Kelly Huegel Free Spirit Publications, 1998 46 | E PI L E PS Y R E S OURCES
EPILEPS Y RESOURCES | 47
Books for Siblings The Other Kid: A Draw-it-out Guidebook for Kids Dealing with a Specialneeds Sibling Author: Lorraine Donlon Llumina Kids, 2007
Epilepsy Resources Local Epilepsy Association of Central Florida, Inc. 109 North Kirkman Road
When Molly Was in the Hospital: A Book for Brothers and Sisters of
Orlando, FL 32811
Hospitalized Children
www.epilepsy-cf.org
Author: Debbie Duncan
(407) 422-1416, extension 101
Rayve Productions, Inc., 1994 Oh Brother! Growing Up with a Special-needs Sibling Magination Press, 2004
National
Special Brothers and Sister: Stories and Tips for Siblings of Children with
Epilepsy Foundation
People Against Childhood
8301 Professional Place
Epilepsy (PACE)
Landover, MD 20785-7223
7 East 85th Street, Suite A3
www.epilepsyfoundation.org
New York, NY 10028
(301) 459-3700 | (800) 332-1000
www.paceusa.org
Author: Natalie Hale
Special Needs, Disability or Serious Illness Author: Annette Hames Jessica Kingsley Publishers, 2005 My Brother Needs an Operation Author: Anna Marie Jaworski Baby Hearts Press, 1999 The Sibling Slam Book: What It’s Really Like to Have a Brother or Sister with Special Needs Author: Donald Meyer Woodbine Press, 2005 Views from Our Shoes: Growing Up
(212) 665-7223 Citizens United for Research
Charlie Foundation to Help Cure
in Epilepsy (CURE)
Pediatric Epilepsy
730 North Franklin Street,
(Ketogenic diet information)
Suite 404
1223 Wilshire Boulevard,
Chicago, IL 60654
Suite 815
www.CUREepilepsy.org
Santa Monica, CA 90403
(312) 255-1801
www.charliefoundation.org (310) 393-2347
with a Brother or Sister with Special Needs Author: Donald Meyer
Epilepsy Institute
American Epilepsy Society
257 Park Avenue South
342 North Main Street
What about me? When Brothers and Sisters Get Sick
New York, NY 10010
West Hartford, CT 06117-2507
Author: Allan Peterkin
www.epilespyinstitute.org
www.aesnet.org
Magination Press, 1992
(212) 677-8550
(860) 586-7505
Woodbine Press, 1997
48 | E PI L E PS Y R E S OURCES
EPILEPS Y RESOURCES | 49
Helpful Websites www.epilepsy.com: Offers a comprehensive overview of epilepsy and offers special sections for kids, teens and families. www.epilepsy-navigator.com: Complete site with many links and resources as well as fun facts about the brain. Great section for
Discussing Pre-surgical Testing and Surgery with Your Child E Be
honest! While our instinct is to protect our children, honesty
children and teens with fun learning links.
really is the best policy, no matter their age. It is better for the child
www.coping-with-epilepsy.com: Offers medical news updates, forums
to be given information from someone they trust, such as a parent
and message boards for patients and families.
or caregiver. Oftentimes, children will overhear conversations or
www.healingwell.com/epilepsy: Resources, medical updates and forums for anyone coping with epilepsy.
imagine the worst about what is happening to them. When children have accurate information, they have the opportunity to ask questions, share their feelings and learn new ways to cope.
www.epilepsyclassroom.com: Created for teachers to implement epilepsy into their classrooms with lesson plans and helpful tips. Site has a section for parents. www.epilepsyadvocate.com: Updated information about the disease with an e-community support component. www.epilepsymoms.com: Site offers podcasts, blogs and chat forums for moms and dads coping with their child’s epilepsy diagnosis. www.seizuretracker.com: Website has downloadable logs and spreadsheets to help one track seizure activity and medications. Also provides links to various epilepsy resources. Please note that information on these websites does not necessarily reflect your child’s doctor’s recommendations. Always consult your child’s doctor about medical treatments, medications and other treatment options first.
50 | E PI L E PS Y R E S OURCES
EPILEPS Y RESOURCES | 49
E Do
not avoid the word “surgery.” If the parent can openly discuss
surgery, the child will be more comfortable discussing it. E Use
age-appropriate language when talking with your child. A helpful
chart has been included to offer suggestions specific to age and development level. E Choose
a quiet time and place when you and your child can sit
and talk with no distractions. It is wise not to have the initial conversation about surgery or hospitalization before bedtime when a child might become anxious. Also, do not wait until the night before the hospitalization to talk with your child. Children need some time
E Some
children benefit from having a calendar to refer to with the
date of the hospitalization marked with a sticker. Counting down the days together can help the child mentally prepare and offer opportunities for dialogue. E Play,
play, play. Play is the work of the child. Using stuffed animals,
dolls and doctor kits helps younger children better understand new information. Play can also serve as a great outlet for any feelings your child may be experiencing about their hospitalization. E Discussing
medical issues may also serve as an opportunity to share
to prepare, typically a few hours to a few days for younger children,
your spiritual faith or family values with your child. This may include
while older children may need a week or two to absorb the news.
prayer, positive thinking or other forms of support.
Younger children may need to hear this information a number of times in order to aid memory and understanding. E Allow
your child to ask questions. Know that these questions may
come hours or days after your initial conversation. E Remember
it is okay to say “I don’t know.” Not everyone has all the
answers. Write down your child’s questions and bring them to the doctor. Tell your child, “We’ll find the answers together.” E Assure
the child nothing he/she did caused the need for surgery.
E Include
your child in the planning and packing for his/her hospital
stay. Allow the child to help choose clothing, toys, media and any comfort items. Since the hospitalization may leave the child feeling powerless, offer him/her choices when possible to provide him/her with a sense of control. E Continue
to offer structure in your child’s life prior to
hospitalization. Consistency and predictability help a child feel
Reinforce that being hospitalized or having surgery is not a
safe. Some routines from home may also be carried out during
punishment. Younger children believe that their actions directly
hospitalization, such as reading stories before bedtime. Routines
cause an event (for example, “I had to come to the hospital because
may help the child feel more “at home” in the hospital.
I broke my brother’s toy.”). E Affirm
that someone will be with him/her throughout hospitalization
and before and after surgery. Let your child know who will be with him/her and when. If parents have arranged a schedule, share this with the child. E Encourage
your child to express any feelings he/she has related to
E Discipline
is still important. Special treatment and inconsistent
expectations can confuse a child, making adjustments before and after surgery more challenging. E With
the support of teachers, the school counselor and your child,
create a plan for school absences. Informing the school of the child’s
upcoming tests or surgery (fear, anxiety, etc.) and help find positive
hospitalizations, making a plan for missed work and addressing
outlets for these emotions. Drawing, writing and talking can all be
any issues with peers are proactive approaches to avoid any future
effective.
problems.
52 | E PI L E PS Y R E S OURCES
EPILEPS Y RESOURCES | 53
Developmental Considerations for Children
Developmental Considerations continued Tips for Parents:
Preschoolers (Ages Three to Five Years) Continued
Child’s Understanding: Minimal to no awareness of illness, but can sense change and feel pain Can sense parent’s anxiety Aware of separation from parents
Talk with child about the illness using books, pictures and toys Use words they understand, keeping explanations brief and simple Reassure them they didn’t cause illness and that someone will care for them Maintain rules and discipline
Anxious around strangers Child’s Understanding:
Child’s Response: Infants and Toddlers
Able to understand more about illness
More fussy than usual
More interested in biology and how the body works
Change in sleeping and eating habits More clingy to parents or caregivers
Tips for Parents: CHILD’S AGE
Provide as consistent of a schedule as possible Offer a lot of affection or physical contact Use play, relaxation and baby massage to help reduce anxiety. Child’s Understanding: Need to be assured that illness is not contagious Children may believe they caused the illness May believe the illness is a punishment Preschoolers (Ages Three to Five Years)
Child’s Response:
May still believe they caused illness CHILD’S AGE
Toddlers may regress or have more tantrums
Aware of how illness may make them feel different Child’s Response: Likely to experience somatic symptoms (headaches, etc.) School Age (Ages Six to 12 Years)
May be more irritable, anxious More sensitive to illness issues Difficulty coping with change School performance may suffer or the child may strive to be perfect Tips for Parents: Child enjoys having tasks to help
Regressed behaviors including bed wetting, thumb sucking
Encourage communication and expression of feelings
Sleep disturbances
Keep child informed about changes, appointments and treatments
Separation anxiety, especially from caregivers Easily frightened May be more aggressive
Encourage them to have fun; they tend to take things more seriously Continue to enforce limits
54 | E PI L E PS Y R E S OURCES
EPILEPS Y RESOURCES | 55
Developmental Considerations continued Child’s Understanding: Capable of abstract thinking
CHILD’S AGE
More adult-like thinking May take a more proactive role asking questions and making care decisions
Your child will not be expected to return to school for several weeks
Better able to understand illness, etiology and treatments
first few weeks. Many children, even adolescents, will take daily naps
Child’s Response: Teenagers (Ages 13 to 18)
School Issues and Re-entry: Planning for/After Surgery
Seeks independence from family, yet feels torn between the need for family and friends More likely to suffer from depression, anxiety and anger issues Tips for Parents:
following surgery. He/she will need to regain strength and rest for the for the first week or so after going home. During this time, they will need to be cared for by another responsible adult if you need to return to work. Discuss your child’s participation in contact sports and other activities with the neurosurgery team while he/she is in the hospital and during the post-operative visits. Expect that there may be some short- and
Respect their need for privacy
long-term restrictions in activities following surgery.
Empower them to balance activities, school and relationships
Once your child returns home from surgery, he/she will likely feel very
Limit-setting and discipline remains important
well as to avoid any infection, it is recommended that your child not
Offer outside support as needed
return to school for three to six weeks after surgery. The neurosurgeon
Use play, relaxation and baby massage to help reduce anxiety.
will let you know when it is safe for your child to return to his/her
tired and need time to rest and regain strength. For this reason, as
school environment. We encourage parents to prepare for their child’s school re-entry after surgery, long before the hospitalization. Returning to school after surgery can cause anxiety in any child. Being prepared and helping to empower your child makes the transition all the easier. E Talk
with your child’s school personnel, including teacher,
counselor and nurse. Keep them informed about your child’s upcoming hospitalization, length of absence, medical needs and academic needs. E Know
that our staff is willing and able to provide letters to school
personnel documenting your child’s hospitalization and medical needs per your request. EPILEPS Y RESOURCES | 57
Both of these reactions are typical and normal depending on your child’s age, gender and development. Try experimenting with different hats, scarves and hairstyles to find what works best for your child. E Especially
overwhelming for older youth, assignments can pile up
after missing weeks of school. Talk with your child’s teacher about creating a workable plan that can be done gradually while your child recovers at home and then returns to school. Can some assignments be made shorter, less intense? Most teachers are very flexible and willing to work with students when they have missed school due to a E Many
children benefit from easing back into school by attending
half
hospitalization. E If
your child tires or feels overwhelmed once back in school, make
days for a couple of weeks instead of the entire day. An example
arrangements with school personnel for the child to take breaks.
might be attending classes from 8:00 am until lunch, as the child
Breaks can be limited to one or two a day, but can be a brief
tires by afternoon.
opportunity for him/her to sit in the nurse’s office or counselor’s
E Discuss
your child’s participation in Physical Education class and
recess with medical staff. Short- and long-term physical restrictions may be necessary after surgery. These may include contact sports and swimming. Protective helmets can add security to your child’s wound and can also be an option. See medical staff if this is an option for your child. E If
your child has an Individual Education Plan (IEP), talk with his/her
teacher about any modifications that might be needed to help child
office if he/she needs to de-stress. E Ask
teachers to prepare classmates and your child’s peers for their
return. Acknowledge that your child will return to school with a scar and may feel anxious, tired, etc. It is the school’s responsibility to help make your child feel as safe as possible. Encourage staff to call your local Epilepsy Foundation to learn more, or have a presenter talk to your child’s class. Visit www.epilepsyfoundation.org for more information.
ease into school after surgery. This might include a personal aide’s hours being temporarily increased or changed or more assistance with testing. E Your
child’s wound will need to remain clean and free from infection,
but will also be something to consider when your child is among his/ her peers. Different children have different ideas about their scars and wounds, so this is an important topic to discuss with your child. Some are excited to share their scar, while others are embarrassed. 58 | E PI L E PS Y R E S OURCES
E Most
importantly, talk to your child. What does he/she want
upon returning to school? What does your child want teachers and classmates to know or not know about surgery and his/her epilepsy? Recognizing that the school needs to have some important information, respect your child’s wishes for privacy. Assist your child in finding support systems such as other trusted adults, creative outlets of expression, and opportunities for fun and friendship. EPILEPS Y RESOURCES | 59
Coping as a Family with Upcoming Epilepsy Surgery While families have coped through various stages of the patient’s
E Coping
tools can make a difference. Everyone has activities that
help during challenging or stressful times. For some, it is reading novels; for others, it is knitting or taking walks. Make a list of your coping skills and plan to bring some of your coping tools to the hospital. Maybe you have an item like a blanket from home that brings you reassurance. Just like your child benefits from his or her teddy bear, you need your own comfort items.
for the patient and family. For patients, parents and siblings alike,
Helping to Prepare Siblings
surgery can present as a new and unique challenge.
Upon his big brother’s epilepsy surgery, the five year-old asked, “What
journey with seizures, epilepsy surgery serves as a crucial milestone
Preparing as Parents E Knowledge
is power. Do not be afraid to ask questions of the
medical team at any time in the process. You can also seek reliable resources such as research articles, books and accredited online sites. The National Epilepsy Foundation offers information and resources at www.epilepsyfoundation.org. E Seek
support. Whether you are in the decision-making process
or holding your child’s hand in the hospital, you can best help your child when you have ample support for yourself. Ask for and rely on the assistance and encouragement of family, friends, co-workers and neighbors. The Epilepsy Surgery Program also has
will his seizures look like when they take them out, Mom? Will I be able to see them?” This is a great example of how school-age children are concrete thinkers. This child’s comment also demonstrates how even young children are aware of and care about their sibling’s health issues. Thus, it is important to take the time to talk with all of your children about the upcoming surgery and what it will entail. E Discuss
the surgery ahead of time with children by offering age-
appropriate information. Expect that children’s questions may come hours or days after your conversation. Open and honest communication will eliminate any fears or misconceived notions on the part of the siblings. E Offer
opportunities for siblings to express feelings in a safe
a Parent-to-Parent Network for parents to connect with others
environment. Some younger children may not have feelings about
whose children have undergone a similar surgery. Professional
their sibling’s surgery until they’ve had further time to process
counseling can also be very helpful for those needing extra support
the information. Encourage children to express feelings by talking,
coping with their child’s condition. The epilepsy surgery social
drawing, punching pillows and other therapeutic outlets.
worker is available to help with any referrals. E Have
a plan. Making arrangements prior to your child’s
E Inform
the child’s school about the upcoming hospitalizations.
Teachers need to be aware of important changes in the child’s life,
hospitalization will relieve any additional stress so that you can
and they may observe changes in your child’s mood or behavior.
remain focused on your child. Try to plan ahead for issues like
Also, the teacher can serve as a support person for the child.
child care, visitor schedules, lodging and employment leaves. If assistance is needed, our staff is happy to help however possible. 60 | E PI L E PS Y R E S OURCES
E Mark
the family calendar. While time can seem ambiguous to
smaller children, marking the calendar with the surgery date can EPILEPS Y RESOURCES | 61
Frequently Asked Questions: Epilepsy Monitoring Unit and Epilepsy Surgery Stay on the Epilepsy Monitoring Unit (EMU) be a helpful tool for the patient and siblings as they mentally prepare for what is to come. E Have
a schedule for caregivers for siblings during the hospitalization.
This plan should be made known to siblings of all ages, as it helps reduce anxiety and assures them that someone will be present to take care of them and their needs. E Plan
a mode of communication between the patient and sibling
What should I bring to the EMU? E All
of your child’s prescription and non-prescription medications in
their original containers for nursing staff’s review E Button-down
tops and comfortable clothes without zippers or
snaps (there is a washer/dryer available) E Slippers E Bandana
or hat for going home if child is old enough to feel self-
during hospitalization, whether it’s the creation of cards or that the
conscious after EEG leads are removed if there is some “glue” left
sibling and patient have brief phone conversations in the evening
in his/her hair
before bedtime. E Be
familiar with visitor policies. Siblings who are under the age of 10
can sometimes imagine worse things than reality. Arranging visits for siblings is always encouraged if possible. E Schedule
time, if possible, to be with your other children during
the patient’s hospitalization. While this can be challenging due to distance, phone calls and the Internet can help bridge the miles.
E Child’s
favorite puzzles, drawing/coloring tools, DVDs, VCR tapes,
CDs, music or computer E Child’s
favorite or new books, activity workbooks, cards or board/
card games or homework from school E Favorite
stuffed animal, doll and blanket/pillow
E Computer
or electronics
E Money
for snacks or vending machines
and plans, try to keep a regular schedule for siblings. Maintaining
E Things
for parents to do when the child is sleeping
school schedules, mealtimes, nap times and bed times are especially
E Sweater,
E Maintain
routines. Even though there may be different caregivers
jacket or extra blanket in case the room feels cool
helpful. Consistency and predictability provide children with the feeling of safety, especially during a time of change and stress. 62 | E PI L E PS Y R E S OURCES
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What is my child’s room like on the EMU? E Private
room with bathroom/shower (rooms in the PICU do not
have showers) E Room-controlled E Pull-out
thermostat
loveseat with bedding provided
E We
want you to be aware that your child’s seizures may present
differently in the EMU compared to at home, especially when he/ she is off of his/her medication. What happens with Phase One testing during the week? E Some
children may need sedation/general anesthesia for certain
E Television
tests. If your child needs this for a test, he or she may not be able
E Internet
to eat for several hours prior to the test.
E Small
access
storage space for personal belongings
• Parents are welcome in any of the testing areas, in the EMU or in other areas of the hospital.
What happens for meals and snacks? E Food,
ordering. E Parents
can request food trays be provided during their stay.
E Parents/visitors E Visitors E If
can go to the cafeteria for meals.
can use hospital vending machines.
your child is NPO (cannot eat or drink) for testing, you will not
be allowed to have food or drink in the room. What happens when my child has a seizure in the EMU? E Nursing
and EEG technologists will work together to identify
whether your child is seizing from video monitoring and/or your input from observations. E Padding
on bed rails, use of oxygen and turning your child on his
side will also help. E Other
• Individual tests will be discussed with you and your child prior to
snacks and drinks are provided for your child through menu
team member (i.e., physicians) and medications will be
available if warranted. E Physicians
will review the VEEG to delineate seizure activity on the
each day. There will not be more than one major test a day.
Following Phase One Evaluation What happens to my child’s medication after going home from the hospital after Phase One Evaluation? E If
your child had to stop or adjust his or her medication downward
during hospitalization, the medication and regular dose schedule will start as soon as possible once testing is complete. E Decisions
may be made, during the hospital stay, to change your
child’s seizure medication in anticipation of surgery or in an effort to improve your child’s seizure control. Your primary neurologist will be made aware of any changes in medication as well as results from hospitalization. Can my child return to daycare or school upon returning home? E We
encourage you to do what is best for your child. Since you will
likely have a weekend ahead after discharge, we recommend a
EEG compared with what was captured on the video in the child’s
“low-key” weekend for your family. Most children will be able to
room.
return to their normal routine for the next week.
E It
will be important for you to push the button in the room every
time you think your child is seizing. 64 | E PI L E PS Y R E S OURCES
E Some
children may be tired for a few days on returning home,
especially if they have missed some sleep with testing. Please EPILEPS Y RESOURCES | 65
monitor your child for any signs of seizure, especially if medicines have been reintroduced or changed. E Please
let us know if you have any questions or need any notes for
daycare or school.
Glossary of Terms Non-surgical Terms
When do we learn of results from Phase One Evaluation after the
Absence Seizure: A generalized seizure that occurs without warning
hospitalizations?
and includes brief periods of staring less than 20 seconds. May be
E Following
hospitalization, your child’s test results will be carefully
reviewed by the epilepsy surgery team. E Results
will then be compiled for presentation at an
interdisciplinary epilepsy surgery conference where your child’s
accompanied by rapid eye blinking or movements of the mouth. Anticonvulsant: Medication that prevents or stops seizures. Apnea: Cessation of breathing. Aura: A sensation your child may have before a seizure.
history and test results will be presented and an individualized
Breakthrough Seizures: Seizures that occur despite drug therapy.
plan will be developed.
These seizures typically follow a honeymoon period.
E An
appointment will be scheduled for you to return to the Epilepsy
Chronic: Affecting a person for a long period of time.
Center for Kids to review and discuss the results and plan for
Clonic: Seizure involving muscle contractions and relaxations.
treatment of your child’s epilepsy. Usually this meeting occurs
Drop Seizures: With brief, but dramatic, disruption of normal brain
within a few weeks after you complete the Phase One Evaluation.
signals that control posture, these children slump to the ground,
What happens if not all the tests were possible to obtain during the hospital stay? E If
a test was not completed, for any reason, your child will be
fall forward or drop to the ground. “Drop attacks” are caused by myoclonic, tonic or atonic seizures. They may result in falls and significant injuries for these children. Eloquent Cortex: Referring to the language, motor and speech
asked to return to the hospital. All Phase One testing, including
areas of the brain that the team needs to spare with any surgical
neuropsychological testing, needs to be completed before your
consideration.
child’s case can be presented at the epilepsy surgery conference.
Clusters of Seizures: Repeated seizures occurring over a short period
E Repeat
tests can sometimes be done on an outpatient basis (i.e.,
of time following periods of no seizure activity.
PET scan, MRI, fMRI or interictal SPECT scan). Some tests will
Complex Partial Seizure: A staring episode during which a child is
require a short hospital stay (two to four days, i.e., ictal SPECT
unable to respond to questions or commands. These seizures usually
scan).
last from 30 seconds to two minutes. When the seizure is over, your
E If
you and your child come from out of state, every effort will be
made to minimize inconvenience to you and your child.
child may have confusion and may have no memory of what happened during the seizure. Cortex: The thin outer layer of the brain that controls movement and senses.
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Cortisectomy: Surgical removal of tissue in the cerebral cortex.
contact or to the surrounding environment after a seizure.
Family Medical Leave Act (FMLA): Provides certain employees with up
Rasmussen’s Encephalitis: This is a rare, chronically inflammatory
to 12 weeks of unpaid, job-protected leave per year. It also requires
disease that presents most often in children under age 10 years.
that their group health care benefits be maintained during the leave.
Seizures typically increase in frequency and severity over a period of
FMLA is designed to help employees balance their work and family
eight to 12 months. They do not respond well to any of the anti-seizure
responsibilities by allowing them to take reasonable unpaid leave for
medications and, thus, the seizures are medically intractable. A child
certain family and medical reasons such as caring for an immediate
may also experience loss of speech and/or ability to move his/her
family member (spouse, child or parent) with a serious health
arms/legs, or experience mental deterioration. Rasmussen’s typically
condition.
involves one hemisphere of the brain, but it can spread to the other
Febrile Seizure: An epileptic seizure that involves one side of the
hemisphere. The cause of Rasmussen’s encephalitis is unknown. It may
brain.
be an autoimmune disease in which immune-system cells enter the
Generalized Seizure: A seizure that affects both sides of the brain. There is a brief loss of consciousness. Honeymoon Period: This is a period of seizure freedom, usually following the start of a new anti-seizure medication or combination of medications. It can be a few days to a few years in length. Ictal: Referring to the period during a seizure. Idiopathic: Of unknown start or cause. Inter-ictal: The period between one seizure ending and another seizure starting.
brain and cause inflammation, seizures and damage. A child’s history of seizures, deficits on his/her physical exam, response to anti-seizure medications and tissue biopsy may be used to determine this diagnosis. Sedation: Use of medication to reduce your child’s anxiety, irritability before a medical or diagnostic procedure that lessens a child’s consciousness. These medications are commonly given by mouth, through an IV or inhaled as a gas. Seizure: An abnormal electrical discharge in the brain. Simple Partial Seizure: Seizure activity in one part of the brain resulting in tingling, jerking or weakness of one or more body parts.
Involuntary Muscle Movement: Contractions of muscles without full
The child is alert, can respond to commands or questions, and
control.
remembers what happened during the seizure.
Ketogenic Diet: A strict, high-fat, low-carbohydrate diet that can aide
Status Epilepticus: Severe, non-stop seizures lasting longer than five
in the control of seizures.
minutes.
Lateralization: Identifying the seizure focus as centering in the right
Technetium: Tc-99m is a silvery gray, radioactive metal found in small
side of the brain (right hemisphere) or in the left side of the brain (left
amounts in our soils, food and water. It is used for nuclear medicine
hemisphere).
testing. In epilepsy surgery, it is used for the ictal SPECT test. Once
Localization: Pinpointing very precisely that the seizure focus is a
in the body it concentrates in the thyroid gland and gastrointestinal
specific part of the brain within one hemisphere, such as the temporal
tract. Half of it is excreted in 60 hours with almost all of it gone within
lobe.
a month. There is a risk of cancer with exposure to any radioactivity.
Post-ictal Confusion: Temporary confusion, inability to respond to
Tonic-clonic (Grand Mal) Seizure: Seizures that cause your child to
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stiffen, lose consciousness and fall. This is followed by a period of
Surgical Terms
Searching for a Cause: Surgical Biopsies and Cortical Dysplasia
Amygdalo-hippocampectomy: Removal of the mesial brain structures,
Intractable seizures frequently have a poorly defined or unknown
which generally accompanies the temporal lobectomy procedure.
cause. Some children, as a result of encephalitis, tuberous sclerosis,
jerking of the arms and legs, usually lasting one to three minutes, but at times longer. After the seizure, your child may be tired and confused and may fall asleep.
Anesthesia: Medication used to block sensations, creating loss of responsiveness and awareness, in order to decrease the pain or distress associated with a surgical or medical procedure. One or more medications may be used. These medications are usually given via an IV or inhaled as a gas. Corticectomy: Removal of an area of the cerebral cortex. May be frontal, temporal, parietal or occipital. Craniotomy: An opening in the skull that is made to place the electrodes and to remove the seizure focus.
stroke, brain tumor, or severe head injury, may have an area of the brain that is more susceptible to seizures. In such cases, these specific health problems may have contributed to your child’s development of intractable seizures. These seizures may be treated with medication and/or surgery. For many other children, however, the cause of their intractable seizures is not apparent from an injury or specific health problem. In these cases, the neurosurgeon may be able to take brain biopsies during your child’s one- or two-step epilepsy surgeries. The small sample of brain tissue is then evaluated by a pathologist to identify a
Lesionectomy: Removal of an anatomic abnormality of the brain such
possible cause of intractable seizures. A disorder, commonly found in
as a tumor, vascular malformation or scarring related to a stroke that
children who have hard-to-treat seizures, is called cortical dysplasia.
is causing seizures.
This dysplasia can be identified from the biopsied tissue.
Lobectomy: Removal of a whole or partial section of the brain (lobectomy versus partial lobectomy). May be frontal, temporal, parietal or occipital and related to the focus of the seizures.
Cortical dysplasia is a disorder of cellular migration. This malformation occurs, for unknown reasons, during the first three months of pregnancy. There is no correlation between cortical dysplasia and how
Stereotactic Methods: The use of image-guided MRI technology in the
a mom cared for herself and the baby during this first trimester of
operating room that assists the surgical team with identifying specific
pregnancy.
brain structures. Subdural Strip and Grid Electrodes: Array of electrodes of different shapes and sizes that are placed on the surface of the brain to collect information via EEG monitoring and identify seizure areas in the brain.
What we do know is that the neurons, or brain cells, typically migrate to the gray matter in the developing brain in an orderly fashion and “line up” in one of six specific layers in the brain tissue. For some unknown reason, in cortical dysplasia, neurons go to the wrong layer
Vagal Nerve Stimulator: Surgical placement of a device around the
in the brain or do not line up in an organized fashion. It is as though
vagus nerve in the neck that helps to control seizures.
these neurons “missed their marching orders.” Sometimes, these
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Parent-to-parent Network Who? The Parent-to-parent Network is designed for parents of epilepsy surgical candidates and for parents of epilepsy post-surgical patients.
What? Shared communication via telephone, email or in person for support through the surgical process and beyond.
When? A time convenient for both sets of parents and scheduled by the parents involved.
Where? It is not necessary for parents to meet in person. Phone and email neurons also have different shapes from the other normal brain cells. Pathologists can see these changes under the microscope.
communication are usually preferred. However, if parents decide to meet, a public location is encouraged for optimal safety.
Cortical dysplasia can occur in very small parts of the brain or involve a
Why?
more widespread area. If it involves an entire hemisphere, it is called
While talking with the medical team can provide many answers, there
hemimegancephaly.
is no substitute for talking with someone who has journeyed through
Symptoms that lead toward a diagnosis of cortical dysplasia include
the same process with their child.
recurrent intractable seizures in childhood. Not all areas of cortical
How?
dysplasia cause seizures, but intractable seizure focus is commonly in
If a parent is interested in talking with someone
an area of cortical dysplasia.
whose child has had a similar surgery, the epilepsy
Suggestion of cortical dysplasia may be found with tools like a high-
surgery nurse coordinator can connect you with
definition 3T-MRI. True confirmation of this disorder, however, can only
another parent. Ask for an authorization form to
be done through tissue biopsy that can be collected during a child’s
connect with a parent soon.
one- or two-step epilepsy surgery. Our pathologists review the tissue
If you are interested in participating in the Parent-
and discuss their findings with the epilepsy surgery team. Results will
to-parent Network, call Billie Pullum, RN, Nurse
then be shared with you at one of your child’s follow-up clinic visits.
Coordinator at (407) 303-8127.
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Parent-to-parent Program Goals and Guidelines Goals: To provide a forum for people who share a common experience to exchange ideas, hope and support while managing their child’s
should contact their child’s health care provider. E Strive
for a caring atmosphere and leave prescribing and diagnosing
to the professionals. Avoid judgment and criticism. E The
support parent is someone who has “been there” and is not a
health care professional. E Everyone’s
experience is unique; therefore, not all information
health condition.
shared will be applicable to you. Simply use what interests you and
To increase one’s ability to cope with challenges by providing:
disregard what does not.
E A
positive climate for sharing knowledge, feelings and
encouragement E An
opportunity for problem solving
By talking with someone who shares a similar experience, we increase our personal awareness about: E The
non-medical aspects of living with a child with a new medical
condition E Resources
in the community
Matching: Once a request is made, we will attempt to match a family with similar experiences. Matching may take time and is dependent upon availability. Guidelines: E Share
E Show
courtesy by actively listening when someone is talking. Try not
to interrupt. E Avoid
generalities by using “I” statements such as “I had a similar
situation and tried….” E Remember
that we cannot solve all problems; providing support is
the goal. Make every effort to leave others’ problems with them and not take them home with you. E Ask
for help if impacted or stressed by supporting a parent. If you
have any concerns, contact your social worker. E Phone
contact will probably work best with families’ care-giving
commitments. E If
you plan to meet in person, meetings should be in a public place
to ensure your safety.
only what you feel comfortable revealing. One may choose
E Epilepsy
Center for Kids is thankful to the parents participating in
to share concerns, feelings, experiences, strengths, wisdom or
this program, and although we get to know many parents through
simply what has worked for them.
treatment of their children, we certainly do not fully know their
E What
is shared is confidential and should not be discussed with
anyone without permission of the disclosing party. E Discussions
are designed to foster support and are directed toward
backgrounds or their personalities. Epilepsy Center for Kids hopes that all parents would at all times act appropriately when participating in this program. However, Epilepsy Center for Kids is
hope and solutions. They are not for the purpose of discussing
not responsible for any unacceptable behavior or any injury that may
medical treatment. Participants should avoid discussing medical
result from any parent, patient or other family member participating
issues because everyone’s treatment is different. If participants
in this program.
have questions regarding medical treatment, the participant 74 | E PI L E PS Y R E S OURCES
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Notes:
Notes:
Notes:
Notes:
Notes:
www.FloridaHospitalForChildren.com
FHFC-12-7302-09-12
601 East Rollins Street | Orlando, Florida 32803 | (407) 303-KIDS (5437)