Epilepsy in Infancy and Childhood TheMatty Fund®
Effects of Epilepsy Epilepsy affects 2.3 million Americans and is the third most common neurological disorder. Nearly 200,000 new cases occur each year. One in every 100 Americans will experience a seizure at some point in their lives, while 3% will develop Epilepsy. It is the most common neurological condition in childhood, and the onset of this condition most often occurs prior to the age of 20, and 50% of childhood epilepsy syndromes occur between 0-5 years. The number of people living with epilepsy in the U.S. is almost equal to the number living with Parkinson’s disease, cerebral palsy and multiple sclerosis combined, yet epilepsy remains one of the world’s most misunderstood conditions. In the U.S. 40,000 people die each year from seizure complications. "Source: Epilepsy Foundation of America" TheMatty Fund®
Definitions Seizures Self-limited clinical events resulting from abnormal firing of cortical neurons in the brain Epilepsy Recurrent (2 or more), unprovoked seizures TheMatty Fund®
Causes of Epilepsy For the majority of people diagnosed with epilepsy, 70%, there is no known cause. In the minority of cases where there is a known cause, it is typically an injury to the brain. Some examples include: head injuries that occur during birth or an accident, brain tumor, stroke, genetic conditions or an infection like encephalitis or meningitis. Children and adults are most often affected. Seizures are divided into two broad categories, generalized and partial. Source: WebMD and the Epilepsy Foundation of America TheMatty Fund®
Generalized Tonic-clonicSeizures This is the most common type of seizure and is often referred to as a “grand mal seizure”. Generalized seizures are produced by electrical impulses from throughout the entire brain. In this type of seizure, the person loses consciousness and collapses followed by muscle stiffening or rigidity where the arms flex up and extend. This phase typically lasts 30-60 seconds followed by a series of jerking movements which lasts for another 30-60 seconds after which the patient falls into a deep sleep. Urinary incontinence and tongue biting may occur during this type of seizure. (See slide on seizure safety protocols) Source: WebMD and the Epilepsy Foundation of America TheMatty Fund®
Partial Seizures Unlike generalized seizures, partial seizures are produced by electrical impulses limited to a small area of one side or cerebral hemisphere of the brain, and they are subdivided as follows: Simple partial seizures where the person remains conscious, can often speak quite normally and can usually remember what happened to them during the seizure. These seizures can affect movement, emotions, sensations and feelings in unusual ways. Complex partial seizures affect a larger area of the brain where consciousness is affected. During this type of seizure a person may appear to be conscious with eyes open and moving about but they are not in control of their movements and do not remember what happened when the seizure is over. The person may be completely unaware of what they are doing. Source: Epilepsy Foundation of America
Sensory and Autonomic Seizures Simple partial seizures can be expressed with symptoms related to movement, emotions or sensations depending on the area(s) of the brain affected. For example, all five senses are controlled by various areas of the brain – touch, hearing, taste, smell and sight. People having this type of seizure may report sensing an unusual or unpleasant taste or smell; a sudden sensation of sweating or abdominal discomfort (autonomic); hearing sounds or voices that are not there, visual distortions in the way things look. People can experience sudden bursts of laughter or crying. They may experience uncontrolled movements in almost any part of the body. Source: Epilepsy Foundation of America
Absence Seizures Absence seizures are also called “petit mal seizures”. These seizures are more common in children than adults, and they often go undetected because there is a short loss of consciousness that comes on with few or no symptoms. Absence seizures can occur many times during the day and typically interrupt an activity and are characterized by a “blank stare”. These seizures begin and end quickly (seconds) with no after effect. They usually do not know they are having a seizure; although, the person may be aware that they “lost time.” Children experiencing absence seizures can appear to be in a trance, daydreaming or disinterested. Source: WebMD and the Epilepsy Foundation of America TheMatty Fund®
Why treat seizures? Lessen the risk of seizure-induced injury Reduce the risk of prolonged seizures Prevent sudden unexplained death in epilepsy Lessen the cognitive effects of frequent seizures Improve patient’s overall quality of life TheMatty Fund®
When to Treat Seizures The risk of recurrence following a first unprovoked seizure in children ranges between 44% to 64%
The greatest risk is in patients with an abnormal neurological exam, abnormal EEG, or remote symptomatic etiology
The recurrence risk is approximately 25% in patients with normal exam and normal EEG
Should a second seizure occur, the recurrence risk jumps to 79% TheMatty Fund®
Treatment Considerations Primary goal is for patient to be seizure and side- effect free For that reason, top considerations are efficacy and side-effect profile Frequency of dosing, ease of administration, and cost are other considerations Medication choices have to be tailored to the individual patient TheMatty Fund®
When to discontinue therapy After 2 years of seizure freedom on medications!
60%-75% will remain seizure free off of medications
If seizures recur, they do so within 1 year in
60%-80% of patients
Recurrence after 2 years is rare
What is Refractory Epilepsy? DEFINITION Simply stated, refractory epilepsy means that a seizure disorder is not responding to anti-epilepsy drug treatment (AED). Although there is a level of debate among experts regarding the definition of refractory epilepsy, a generally accepted definition is the failure of two or more anti-epilepsy drugs and the occurrence of one or more seizures per month over 18 months. Parents and caregivers are advised to have a conversation with their doctor to find out what this diagnosis means for their child. Most important, what are the treatment options for those children whose seizures do not respond to anti-seizure medications, and what is the best treatment option for your child? TheMatty Fund®
Ketogenic Diet—What it looks like According to a Special Report published in Epilepsia, consensus recommendations from an international panel of 26 pediatric epilepsy specialists and dieticians concluded that “alternative or non-pharmacologic treatments such as dietary therapy can be highly effective and should be seriously considered for the population that does not respond to anti-seizure medications.” They further recommended that “dietary therapy be considered earlier as an option for treatment of difficult to manage epilepsy.” The most widely known dietary therapy is the ketogenic diet which has been documented to effectively treat epilepsy since 1924, and two alternative less restrictive therapies have emerged in recent years including the modified Atkins diet and the low-glycemic index diet. Epilepsia (50(2):304-317, 2009) The Ketogenic Diet must be closely managed by a team of medical & dietary experts. The diet is initially implemented in a hospital setting.
Vagus Nerve Stimulation (VNS) VagalNerve Stimulation is a treatment option that is approved for children and adults over 12 years old who have partial seizures that are not responsive to other therapies. The goal of VNS is to prevent seizures by sending electrical energy to the brain. The pulses of energy are sent to the brain from a small battery that is surgically implanted in the chest wall and travels along thin electrodes wound around a large nerve in the neck called the vagus nerve. A person can activate the pulse of energy from the battery when they feel a seizure coming on by passing a magnet over the battery. This treatment option is often used in combination with anti –seizure medications, hopefully in lesser amounts, to achieve an improved quality of life with less seizures. Source: Epilepsy Foundation of America TheMatty Fund®
Epilepsy Surgery Brain surgery is a treatment option to be considered when your child’s epilepsy does not respond to two or more anti-seizure medications (refractory) and the seizures start in just one part of the brain (focal). Many tests are done in advance of this type of surgery to include identifying the exact seizure site deep in the brain. The seizure site must be in an area of the brain that can be surgically removed without damaging essential brain functions that impact speech, movement, memory, emotion and sight. This type of surgery is done at hospitals or medical centers that have departments that specialize in the treatment of epilepsy. TheMatty Fund®
Nursing Care for Students with Epilepsy TheMatty Fund®
RI School Health Regulations Individualized Health Care Plan (IHCP) A comprehensive plan for care of children with special health care needs developed by the certified school nurse teacher in collaboration with the student, parents, guardians, school staff, community, and health care provider(s), as appropriate. Emergency Care Plan (ECP) A set of procedural guidelines that provides specific directions about what to do in a particular emergency situation. A student with special health care needs may have both an ECP and an individualized health care plan (IHCP). The ECP may be formulated as part of the IHCP. TheMatty Fund®
Obtain medications to be administered during school hours with written MD order and parent signature – include dosage , time of day given, side effects and any special instructions – including Diastat if ordered.
If communication with student’s health care team is desired, fax signed consent to office, and call to request orders for meds, recommendations for care and IEP, etc.
Prepare student’s IHCP and ECP, distribute to teachers, principal, parents - obtain signatures.
Make available for sub nurses/teachers. TheMatty Fund®
Preparation for Students with Epilepsy An important part of creating a welcoming, safe and productive environment for incoming students with epilepsy is educating and raising epilepsy awareness among classmates who may be exposed to a seizure at some point during the school year. School programs like those offered by the Matty Fund teach students about epilepsy and seizure protocols in a fun and uplifting manner. This helps to dispel the myths and stigma associated with epilepsy. Programs like this encourage Inclusion, celebrate diversity and help children living with epilepsy feel less isolated and different from their classmates. Call or contact the Matty Fund for more information regarding epilepsy awareness programs. (401) 789-7330 or www.MattyFund@cox.net TheMatty Fund®
Most frequent adverse effect is somnolence (sleepiness) (23%)
Less frequently reported were dizziness, headache, abdominal pain, vasodilation, diarrhea, ataxia, euphoria, incoordination, asthenia, rhinitis, and rash. (2-5%)
Diastat – Delivery of Medication Be sure prescribed dose is visible in display window and green “READY” band is locked in place. Place student in side-lying position, facing you. Remove cap from syringe, lubricate tip with lubrication jelly. Separate buttocks to expose rectum. Gently insert syringe tip. Slowly count to 3 while pushing plunger until it stops. Count to “3” again while holding buttocks closed.
Diastat - Things to Remember Check expiration date. Monitor child’s accurate weight (Dosage is based on the child’s weight) Keep kit with student- not locked away. TheMatty Fund®
Vagal Nerve StimulatorImportant information for students with VNS TheMatty Fund®
Using the VNS Therapy™ Magnet In addition to the stimulation received automatically from VNS Therapy, the VNS Therapy Magnet lets an extra dose of stimulation be administered anytime, for example, VNS can be administered when:
VNS Therapy™ Magnet To use the magnet, hold it over the generator directly over clothing (usually swiping from left shoulder to left upper chest) for a few seconds, then quickly remove it. This will start an additional dose of stimulation that may enable you to: Stop, shorten, decrease the severity of a seizure The pulse generator is programmed to deliver stimulation automatically, according to a schedule determined by the healthcare team. The magnet should be kept with student – notlocked in nurse’s office. TheMatty Fund®
Common Side Effects with VNS Therapy Common side effects associated with VNS Therapy include:
A Parent’s Perspective Like any parent, a parent of a child living with epilepsy wants their child to be productive, happy and safe while they are in school. Some common concerns parents face in sending their child off to school include:
Discovering My Epilepsy Support Group What does a diagnosis of epilepsy mean to parents and caregivers? FEAR Anxiety FRUSTRATION Isolation Supporting children and families living with epilepsy is one of our highest priorities, and there is no better resource than parents who have had experience navigating complex medical and educational systems on behalf of their children.
A Teacher’s Perspective Comprehensive plans (IEP, IHCP, 504) and open lines of communication with parents are instrumental to the child’s safety and progress while they are in school. Teachers play such an important role in the child’s success, both educationally and socially.
Participate in the development of all relevant plans and be fully aware of all
plans relating to the child
Ensure protocols are followed when primary teachers are absent
Recognize a seizure, especially those with few visible symptoms
Know seizure first-aid protocols – teachers and classmates
Understand the side effects of anti-seizure medications and their impact on
the child’s behavior, personality and abilities
Identify reasonable accommodations that will help the child succeed
Implement strategies to reduce the child’s anxiety when returning to school
after a long absence
Implement strategies to reduce anxiety among all students should a child have
a seizure in school TheMatty Fund®
Tips for Teachers Keep your conversations with parents honest, site clear examples Help them find positive venues to voice their worries and concerns Maintain a journal of questions or concerns you may have for the parent
Turn to the educational team within your school to create an
accountability system for all staff working with that child. TheMatty Fund®
Navigating the Educational System TheMatty Fund®
Review results of all evaluations and decide eligibility for special education.
If eligible, student may receive specialized teaching and support services outlined in a special education plan designed by qualified professionals with parents.
504 plans or IEPs – Accomodation Examples Provide medical monitoring Arrange a buddy system Provide rest time and academic consideration following a seizure. Provide an alternative place free of distractions. Provide education for peers and staff about Epilepsy. Plan for academic make-up so the individual can catch up with their peer group. Provide access to supportive counseling if needed. TheMatty Fund®
Mental Health Support Students with epilepsy often feel isolated and different from their classmates. They have to deal with the fear and unpredictability of seizures and the possibility of having a seizure in front of their classmates, having to take medications during the school day and the side effects of anti-seizure medications. Students with epilepsy may need support with the following issues related to their condition:
Counseling or behavioral plans may need to be built into any accommodation plan created. Services may be delivered by Guidance Counselor, Social Worker, or School Psychologist in consultation with School Nurse. TheMatty Fund®
Know and understand that for many parents of children with epilepsy or any other medical disability, you are their connection, their safety net, with the school personnel. Thank you for all your contributions and tireless advocacy on behalf of our children. Matthew Richard Siravo Age 5 TheMatty Fund®