About epilepsy - The Matty Fund


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About epilepsy - The Matty Fund

  1. 1. Epilepsy in Infancy and Childhood<br />TheMatty Fund®<br />
  2. 2. Effects of Epilepsy<br />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.<br />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.<br />In the U.S. 40,000 people die each year from seizure complications. <br />"Source: Epilepsy Foundation of America"<br />TheMatty Fund®<br />
  3. 3. Definitions<br />Seizures<br /> Self-limited clinical events resulting from<br /> abnormal firing of cortical neurons in the brain<br />Epilepsy<br />Recurrent (2 or more), unprovoked seizures<br />TheMatty Fund®<br />
  4. 4. Causes of Epilepsy<br />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.<br />Source: WebMD and the Epilepsy Foundation of America<br />TheMatty Fund®<br />
  5. 5. Generalized Tonic-clonicSeizures<br />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.<br />(See slide on seizure safety protocols)<br />Source: WebMD and the Epilepsy Foundation of America<br />TheMatty Fund®<br />
  6. 6. Partial Seizures<br />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.<br />Source: Epilepsy Foundation of America<br />
  7. 7. Sensory and Autonomic Seizures<br />Simple partial seizures can be expressed with symptoms related to movement, emotions or sensations depending on the area(s) of the brain affected.<br />For example, all five senses are controlled by various areas of the brain – touch, hearing, taste, smell and sight. <br />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.<br />Source: Epilepsy Foundation of America<br />
  8. 8. Absence Seizures<br />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. <br />Source: WebMD and the Epilepsy Foundation of America<br />TheMatty Fund®<br />
  9. 9. TREATMENT<br />TheMatty Fund®<br />
  10. 10. Why treat seizures?<br />Lessen the risk of seizure-induced injury<br />Reduce the risk of prolonged seizures<br />Prevent sudden unexplained death in epilepsy<br />Lessen the cognitive effects of frequent seizures<br />Improve patient’s overall quality of life<br />TheMatty Fund®<br />
  11. 11. When to Treat Seizures<br />The risk of recurrence following a first unprovoked<br />seizure in children ranges between 44% to 64%<br /><ul><li>The greatest risk is in patients with an abnormal neurological exam, abnormal EEG, or remote symptomatic etiology
  12. 12. The recurrence risk is approximately 25% in patients with normal exam and normal EEG</li></ul>Should a second seizure occur, the recurrence risk<br /> jumps to 79%<br />TheMatty Fund®<br />
  13. 13. Treatment Considerations<br />Primary goal is for patient to be seizure and side- effect free<br /> For that reason, top considerations are efficacy and side-effect profile<br /> Frequency of dosing, ease of administration, and cost are other considerations<br /> Medication choices have to be tailored to the individual patient<br />TheMatty Fund®<br />
  14. 14. When to discontinue therapy<br />After 2 years of seizure freedom on medications!<br /><ul><li>60%-75% will remain seizure free off of medications
  15. 15. If seizures recur, they do so within 1 year in </li></ul> 60%-80% of patients<br /><ul><li>Recurrence after 2 years is rare</li></ul>TheMatty Fund®<br />
  16. 16. What is Refractory Epilepsy?<br />DEFINITION<br />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.<br />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?<br />TheMatty Fund®<br />
  17. 17. Non-Medication Treatment Options<br />Ketogenic<br />Diet<br />Vagal<br />Nerve Stimulation<br />Epilepsy<br />Surgery<br />TheMatty Fund®<br />
  18. 18. Ketogenic Diet—What it looks like<br />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. <br />Epilepsia (50(2):304-317, 2009)<br />The Ketogenic Diet must be closely managed by a team of medical & dietary experts. The diet is initially implemented in a hospital setting.<br />
  19. 19. Vagus Nerve Stimulation (VNS)<br />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.<br />Source: Epilepsy Foundation of America<br />TheMatty Fund®<br />
  20. 20. Epilepsy Surgery<br />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.<br />TheMatty Fund®<br />
  21. 21. Nursing Care for Students with Epilepsy<br />TheMatty Fund®<br />
  22. 22. RI School Health Regulations<br />Individualized Health Care Plan (IHCP)<br />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.<br />Emergency Care Plan (ECP)<br />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.<br />TheMatty Fund®<br />
  23. 23. Preparation for Students with Epilepsy<br /><ul><li>Meet the student and his family.
  24. 24. Obtain a history if not provided with registration paperwork to include:
  25. 25. Date of Diagnosis
  26. 26. Name; telephone # of health care provider; seizure type, frequency, duration, usual posticalbehavior/care.
  27. 27. Be sure to have updated emergency contact information checked quarterly.
  28. 28. Obtain signature to release health information form to enable communication with doctor/nurses. </li></ul>TheMatty Fund®<br />
  29. 29. Preparation for Students with Epilepsy<br /><ul><li>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.
  30. 30. 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.
  31. 31. Prepare student’s IHCP and ECP, distribute to teachers, principal, parents - obtain signatures. </li></ul>Make available for sub nurses/teachers.<br />TheMatty Fund®<br />
  32. 32. Preparation for Students with Epilepsy<br />An important part of creating a welcoming, <br />safe and productive environment for incoming <br />students with epilepsy is educating and raising <br />epilepsy awareness among classmates who <br />may be exposed to a seizure at some point <br />during the school year. School programs like <br />those offered by the Matty Fund teach <br />students about epilepsy and seizure protocols<br />in a fun and uplifting manner. This helps to <br />dispel the myths and stigma associated with <br />epilepsy. Programs like this encourage <br />Inclusion, celebrate diversity and help children <br />living with epilepsy feel less isolated and <br />different from their classmates. Call or contact <br />the Matty Fund for more information regarding <br />epilepsy awareness programs. <br />(401) 789-7330 or www.MattyFund@cox.net<br />TheMatty Fund®<br />
  33. 33. First Aid for Seizures <br /><ul><li>Stay Calm – provide for student privacy if possible
  34. 34. Send someone to call emergency contacts if needed
  35. 35. Time the seizure
  36. 36. Put something soft under the child’s head
  37. 37. Do not restrain or hold down
  38. 38. Do not put anything in the child’s mouth
  39. 39. Roll child on their side after the seizure ends
  40. 40. Be comforting & talk gently to the child
  41. 41. Check for a MedicAlert bracelet or other medical I.D.
  42. 42. Stay with the child until fully conscious
  43. 43. As planned in the Emergency Care Plan
  44. 44. Child’s seizure lasts more than 5 minutes
  45. 45. Child has repeated seizures without regaining consciousness
  46. 46. Child is injured or has diabetes
  47. 47. Child has breathing difficulties
  48. 48. Child has a seizure in the water
  49. 49. Child is injured
  50. 50. Child has a first-time seizure</li></ul>Call 911….<br />Mrs. Taylor & Matty’s classmates know proper seizure protocols <br />TheMatty Fund®<br />
  51. 51. Diastat<br /><ul><li>DIASTAT is a rectal gel formulation of diazepam, used to treat acute repetitive/prolonged seizures “in the field.”
  52. 52. DIASTAT comes pre-set to give the ordered dose for the child, and should be given prn as ordered by health care provider </li></ul>(Example: “for seizure > 10 minutes.)<br /><ul><li>Onset of effect - usually 5-15 minutes, with effectiveness for 12 hours.</li></ul>TheMatty Fund®<br />
  53. 53. Diastat - Adverse Effects<br /><ul><li>Most frequent adverse effect is somnolence (sleepiness) (23%)
  54. 54. Less frequently reported were dizziness, headache, abdominal pain, vasodilation, diarrhea, ataxia, euphoria, incoordination, asthenia, rhinitis, and rash. (2-5%)</li></ul>TheMatty Fund®<br />
  55. 55. Diastat – Delivery of Medication<br />Be sure prescribed dose is visible in display window and green “READY” band is locked in place.<br />Place student in side-lying position, facing you.<br />Remove cap from syringe, lubricate tip with lubrication jelly.<br />Separate buttocks to expose rectum.<br />Gently insert syringe tip. Slowly count to 3 while pushing plunger until it stops.<br />Count to “3” again while holding buttocks closed.<br />
  56. 56. Diastat - Things to Remember<br />Check expiration date.<br /> Monitor child’s accurate weight<br /> (Dosage is based on the child’s weight)<br /> Keep kit with student- not locked away.<br />TheMatty Fund®<br />
  57. 57. Vagal Nerve StimulatorImportant information for students with VNS<br />TheMatty Fund®<br />
  58. 58. Using the VNS Therapy™ Magnet<br />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:<br /><ul><li>An aura comes on before a seizure occurs.
  59. 59. You believe that a seizure is starting
  60. 60. Any time during a seizure </li></ul>TheMatty Fund®<br />
  61. 61. VNS Therapy™ Magnet<br />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:<br /> Stop, shorten, decrease the severity of a seizure <br /> The pulse generator is programmed to deliver stimulation automatically, according to a schedule determined by the healthcare team. <br /> The magnet should be kept with student –<br />notlocked in nurse’s office.<br />TheMatty Fund®<br />
  62. 62. Common Side Effects with VNS Therapy<br />Common side effects associated with VNS Therapy include:<br /><ul><li>Voice alteration
  63. 63. Tickling in the throat
  64. 64. Cough and shortness of breath </li></ul>These side effects typically occur only during stimulation and<br />may diminish over time. Since VNS Therapy is not a drug, it<br />produces no drug interactions.<br />TheMatty Fund®<br />
  65. 65. Special Considerations<br /><ul><li>Gym/Recess/Aftercare
  66. 66. Helmets
  67. 67. Safety and Privacy
  68. 68. Hallway Passes/ Buddy System
  69. 69. Pregnancy/birth control
  70. 70. Field Trips
  71. 71. School Bus
  72. 72. Substance abuse
  73. 73. Medic-Alert
  74. 74. Sports/Coaches
  75. 75. Driving</li></ul>These issues can be addressed when the team is developing the Individual Health Care Plan and modified as necessary and appropriate<br />
  76. 76. Parents and Teachers<br />TheMatty Fund®<br />
  77. 77. A Parent’s Perspective<br />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: <br /><ul><li>Safety…ensure the school is “seizure smart”
  78. 78. Quality of life
  79. 79. Reasonable accommodations to help the child succeed
  80. 80. Epilepsy as a “hidden disability”…the impact of disclosure on child
  81. 81. Timely communication and feedback with teachers and </li></ul> school personnel<br /><ul><li>Awareness of resources that are available to support the </li></ul> child while they are in school<br /><ul><li> Advocating for child in a manner that is effective and productive
  82. 82. 504 medical plans, Individual Education Plan (IEP), </li></ul> Individualized Health Care Plan (IHCP), Emergency Care Plan (ECP)<br /><ul><li> Bullying
  83. 83. After school activities (sports, clubs)</li></ul>TheMatty Fund®<br />
  84. 84. Discovering My Epilepsy Support Group<br />What does a diagnosis of epilepsy mean to parents and caregivers?<br />FEAR<br />Anxiety<br />FRUSTRATION<br />Isolation<br />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. <br />
  85. 85. A Teacher’s Perspective<br />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.<br /><ul><li>Participate in the development of all relevant plans and be fully aware of all </li></ul> plans relating to the child<br /><ul><li>Ensure protocols are followed when primary teachers are absent
  86. 86. Recognize a seizure, especially those with few visible symptoms
  87. 87. Know seizure first-aid protocols – teachers and classmates
  88. 88. Understand the side effects of anti-seizure medications and their impact on </li></ul> the child’s behavior, personality and abilities<br /><ul><li>Identify reasonable accommodations that will help the child succeed
  89. 89. Implement strategies to reduce the child’s anxiety when returning to school </li></ul> after a long absence<br /><ul><li>Implement strategies to reduce anxiety among all students should a child have </li></ul> a seizure in school<br />TheMatty Fund®<br />
  90. 90. Tips for Teachers<br /> Keep your conversations with parents honest, site clear examples<br /> Help them find positive venues to voice their worries and concerns<br /> Maintain a journal of questions or concerns you may have for the <br />parent<br /><ul><li> Turn to the educational team within your school to create an </li></ul> accountability system for all staff working with that child.<br />TheMatty Fund®<br />
  91. 91. Navigating the Educational System<br />TheMatty Fund®<br />
  92. 92. Working with the Educational Team<br /><ul><li>School Nurse is the Gateway to Accommodations
  93. 93. Obtain medical documentation of disability
  94. 94. Obtain copies of any evaluations conducted privately
  95. 95. School Principal, nurse, and other professionals design section 504 accommodations
  96. 96. Special Education Team evaluates student’s need for IEP services</li></ul>TheMatty Fund®<br />
  97. 97. 504 Plan<br />504<br />Plan<br /><ul><li>Meeting between parent, nurse, principal, other professionals.
  98. 98. Create an official, legal document that creates accommodations for medical, personal, and safety needs in the school environment.
  99. 99. The 504 Plan is used to help the child succeed by providing appropriate accommodations.</li></ul>TheMatty Fund®<br />
  100. 100. Creating an IEP<br />IEP<br /><ul><li>Meet with special educator, nurse, </li></ul>school psychologist, and other professionals.<br /><ul><li>Review medical reports and other documentation of disability and needs.
  101. 101. Decide if further evaluations are needed.
  102. 102. Review results of all evaluations and decide eligibility for special education.
  103. 103. If eligible, student may receive specialized teaching and support services outlined in a special education plan designed by qualified professionals with parents.</li></ul>TheMatty Fund®<br />
  104. 104. 504 plans or IEPs – Accomodation Examples<br />Provide medical monitoring<br />Arrange a buddy system<br />Provide rest time and academic consideration following a seizure.<br />Provide an alternative place free of distractions.<br />Provide education for peers and staff about Epilepsy.<br />Plan for academic make-up so the individual can catch up with their peer group.<br />Provide access to supportive counseling if needed.<br />TheMatty Fund®<br />
  105. 105. Mental Health Support<br />Students with epilepsy often feel isolated and different from their classmates. <br />They have to deal with the fear and unpredictability of seizures and the <br />possibility of having a seizure in front of their classmates, having to take <br />medications during the school day and the side effects of anti-seizure <br />medications. Students with epilepsy may need support with the <br />following issues related to their condition:<br /><ul><li>Anxiety
  106. 106. Self-Esteem
  107. 107. Social Skills
  108. 108. Coping Skills
  109. 109. Behavior</li></ul>Counseling or behavioral plans may need to be built into any accommodation <br />plan created. Services may be delivered by Guidance Counselor, Social <br />Worker, or School Psychologist in consultation with School Nurse.<br />TheMatty Fund®<br />
  110. 110. Know and understand that for many parents of children with <br />epilepsy or any other medical disability, you are their<br />connection, their safety net, with the school personnel. <br />Thank you for all your contributions and tireless advocacy on behalf of <br />our children.<br />Matthew Richard Siravo<br />Age 5<br />TheMatty Fund®<br />