Define Seizures and Epilepsy Recognize common seizure types Describe more common epilepsy syndromes Learn about new seizure classifications Describe

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2 Define Seizures and Epilepsy Recognize common seizure types Describe more common epilepsy syndromes Learn about new seizure classifications Describe types of seizure emergencies Describe side effects and risks of seizures, medicines and other treatments for epilepsy

3 Project School Alert First Responders/Law Enforcement Training Transition Services Support groups Advocacy Educational Conferences and seminars Information and Referrals (doctors, community services) Camp Achieve Adult Services Hispanic Services Young Adult Retreat 3

4 Epilepsy is the 4 th most common neurological disorder after stroke, Alzheimer s and migraine 1 in 10 people will have a single seizure in their lifetime 1 in 26 people will develop epilepsy in their lifetime 150,000 people are diagnosed with epilepsy each year % will live with active seizures because available treatments do not work.

5 Epilepsy is a disorder characterized by: Recurrent and Unprovoked - 2 or more seizures within a 24 hour time period not caused by other known medical issue OR One unprovoked seizure and another within 10 years. OR One unprovoked seizure and abnormal MRI or EEG EPILEPSY is the same as a SEIZURE DISORDER

6 Seizure is a symptom of a disturbance in the electrical activity of the brain Seizures can be provoked by many things: High fever Drugs/Alcohol Infections Brain Bleed/Stroke

7 For approximately 60% of people who are diagnosed with epilepsy, the cause is unknown. About 40%, the cause of the seizures are known Brain trauma Brain lesions (i.e. tubers, tumors) Sequelea of Infections of the brain (i.e. meningitis, encephalitis, measles) Brain injury at birth Congenital malformations Genetic causes

8 Most children are neurotypical and outgrow their epilepsy may be seizure free and off medications as adults Others however have other brain issues including: Neurodevelopmental delays Intellectual disabilities, cerebral palsy, autism spectrum disorders Multiple seizure types Anxiety, Depression, ADD

9 Up to 2/3 are seizure free on their medications 1/3 are medication resistant (medically refractory, and other terms) Details to follow

10 Missed or late medication Emotional stress Sleep deprivation Hormonal changes Alcohol, recreational drugs Drug interactions Missed meals, specific foods/drinks Nutritional deficiencies Specific stimuli Flashing lights or patterns Hyperventilation Sudden loud noises Other stimuli

11 Generalized Seizures Whole brain at once Convulsions, staring, muscle spasms, and falls Most common are absence & tonic-clonic Focal Seizures (partial) Start in one part of brain Symptoms relate to the part of the brain effected Most common are complex partial and tonic-clonic

12 Some seizure types like tonic seizures may have either a focal onset or generalized onset. Seizure descriptions often did not specify a level of consciousness. Altered consciousness is a confusing concept. Some terms in current use do not have high levels of community acceptance or public understanding, such as psychic, partial, simple partial, complex partial, and dyscognitive. Some important seizure types are not included.

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15 OLD TERM Unconscious Partial Simple partial Complex Partial Dyscognitive Psychic Secondarily generalized tonic- clonic Arrest, freeze, pause, interruption. NEW TERM Impaired awareness Focal Focal aware Focal impaired awareness Focal impaired awareness Cognitive Focal to bilateral tonic-clonic Behavior arrest

16 Absence Generalized absence Atonic or drop attack Focal or generalized atonic Grand mal Generalized or unknown onset tonic clonic Myoclonic Focal or generalized myoclonic Petit mal Generalized absence Tonic clonic Generalized or unknown onset tonic clonic Complex partial Focal impaired awareness Simple partial Focal aware

17 A student describes seizures beginning with 30 seconds of an intense feeling that familiar music is playing. She can hear other people talking, but afterwards realizes that she could not determine what they were saying. After an episode, she is mildly confused, and has to reorient herself. The seizures would be classified as focal seizures with impaired awareness. Even though the patient is able to interact with her environment, she cannot interpret her environment, and is mildly confused.

18 A student has seizures during which he remains fully aware, with the hair on my arms standing on edge and a feeling of being flushed. These are classified as focal aware non-motor autonomic, or more succinctly focal aware autonomic. The old classification would have called them simple partial autonomic seizures.

19 A high school student with juvenile myoclonic epilepsy has seizures beginning with a few regularly-spaced jerks, followed by stiffening of all limbs and then rhythmic jerking of all limbs. This would be classified as generalized myoclonic-tonic-clonic seizures. No corresponding single seizure type existed in the old classification, but they might have been called myoclonic seizures followed by a tonicclonic seizure.

20 Aura First symptom of a seizure, often called a warning. (focal aware) Most commonly seen with partial seizures. Ictus- What is seen/felt during a seizure Postictal- What is seen/felt after the seizure, until the brain recovers to baseline

21 A sudden hoarse cry Loss of consciousness May fall if standing Muscles become tonic or stiff Convulsions (stiffening of arms and legs followed by rhythmic jerking) Shallow breathing and drooling may occur Possible loss of bowel or bladder control Occasionally skin, nails, lips may turn blue Generally lasts 1 to 3 minutes Usually followed by confusion, headache, tiredness, soreness, speech difficulty

22 Pause in activity with blank stare Brief lapse of awareness Possible chewing or blinking motion Usually Lasts 1-10 seconds May be confused with: Daydreaming Inattentiveness ADD

23 Myoclonic brief muscle contractions, may occur singly or in clusters, affect certain muscle groups, or one or both sides of body Tonic -bilateral stiffening or posturing of body Atonic (drop attack) loss of tone, may result in drop of head, trunk, or whole body

24 Consciousness is not impaired; often called an aura Involuntary movements (isolated twitching of arms, face, legs) Sensory symptoms (tingling, weakness, sounds, smells, tastes, visual distortions) Psychic symptoms (déjà vu, hallucinations, fear, anxiety, a feeling they can t explain ) Duration is usually less than 1 minute May be confused with acting out, mental illness or psychosomatic illness

25 Altered awareness Blank stare/dazed look AUTOMATISMS (picking at clothes, lip smacking, chewing) Nonsensical speech or lip smacking Clumsy or disoriented movements Aimless walking Picking things up Often lasts 1 to 3 minutes Often followed by tiredness, headache or nausea May be confused with: Drunkenness or drug abuse Aggressive behavior

26 Focal seizure that spreads to involve entire brain May spread rapidly or occur after a typical focal seizure Generalized seizure may be: Tonic-Clonic Atonic Tonic

27 Childhood Absence Epilepsy (CAE) Benign Rolandic Epilepsy (BRE, BECTS) And more serious: Ohtahara Syndrome (Early Infantile Epileptic Encephalopathy) West Syndrome (Infantile Spasms Syndrome) Dravet Syndrome (Severe myocolonic Epilepsy of infancy) Lennox Gastaut Syndrome

28 School Age onset Generalized Epilepsy Staring Spells Can be very very frequent School often first to notice Typically very responsive to medications Outgrow by puberty

29 Late elementary school onset Focal Epilepsy Facial twitching, difficulty speaking, drooling Secondarily convulses Often at night Reading related school issues Don t have to treat (though we almost always do) Outgrow by post puberty (13-16yo)

30 Onset with febrile seizures in 1 st year of life Unprovoked seizures Multiple types- absence, TC, Myoclonic, Tonic Both generalized and focal features Developmental plateau around age 3 Ataxia (generally seen in gait abnormalities) Seizures don t respond to treatments Due to mutation in SCN1A gene Life long problems- ID, Autism

31 Childhood onset (3-8yo) Often evolves from Infantile spasms- West syndrome Multiple seizure types Atonic, Tonic-Clonic, Atypical Absence, Myoclonic Primarily generalized, but with focal seizures Many Causes Often does not respond to medications Life long disorder Intellectual Disabilities, Motor disabilities, Autism

32 Events that look like epilepsy seizures but on EEG monitoring have no correlate (abnormal electrical discharges) Video-EEG monitoring is the most effective way of diagnosing events Can be caused by a variety of physical or psychological factors

33 MOST SEIZURES ARE NOT MEDICAL EMERGENCIES Basic first aid may vary depending on whether there is: No change in awareness or consciousness Altered awareness Loss of consciousness Don t give anything by mouth until the student is back to normal state and able to swallow normally*. No first aid may be needed for absence seizures or seizures with no loss of awareness. *Unless child is prescribed an oral rescue medication. Follow doctor s administration instructions.

34 Protect from potentially harmful objects Observe and time events: a seizure lasting more than 5 minutes is a medical emergency, Call 911 Ensure airway is unobstructed Cushion and protect head Turn person on one side Remain with person until fully conscious DO NOT put anything in mouth DO NOT restrain

35 Speak softly and calmly Guide away from potentially harmful objects such as tables, chairs and doors Allow for wandering in a contained area If lasts 5 minutes beyond what is routine for that person or another seizure begins before full awareness is regained, call 911 DO NOT restrain or grab (may result in combativeness) DO NOT shout or expect verbal instructions to be obeyed

36 Seizure Emergencies Potential emergency- changes in typical seizure type or frequency Actual emergency status epilepticus: prolonged or repeated seizures; a seizure lasting more than 5 minutes is a medical emergency Injuries or Adverse Events Physical injuries Delayed or unrecognized complications of seizures, i.e. aspiration pneumonia, head trauma, fracture Serious treatment side effects Worsening of comorbid conditions

37 New ILAE definition of prolonged or repeated seizures and convulsive status epilepticus One convulsive seizure lasting 5 minutes or longer Repeated seizures (three or move in an hour) without recovery to baseline between events

38 People may die during a seizure or due to complications from a seizure or status epilepticus The most common form of death in epilepsy is SUDEP, sudden unexplained death in epilepsy applies to a sudden death in someone known to have epilepsy, in the absence of an obvious cause for the death.

39 ANTIEPILEPTIC MEDICATIONS (antiseizure medications) SURGERY DIETS BRAIN STIMULATION (VNS, RNS, AND DBS)

40 Before 1993, drug choices for epilepsy were limited Since 1993, many new products Approximately % of those with newlydiagnosed epilepsy become seizure free on medication About 1/3 of people with epilepsy have seizures that are not controlled by medication

41 CBD vs THC Emerging data shown that it has some effect Interacts with other drugs Studies are in it s infancy Dosing is an issue Epidiolex is the first FDA approved CBD drug to treat seizures. Indicated for Dravet and Lennox Gastaut Syndromes

42 Carbamazepine (Tegretol, Tegretol XR, Carbatrol) Chlorazepate (Tranxene) Clonazepam (Klonopin) Ethosuximide (Zarontin) Phenobarbital Phenytoin (Dilantin, Phenytek Valproic acid (Depakene) Valproate sodium (Valproate)

43 Felbamate (Felbatol Tiagabine (Gabitril) Levetiracetam (Keppra, Keppra XR) Lamotrigine (Lamictal, Lamictal XR) Gabapentin (Neurontin) Oxcarbazepine(Trileptal, Oxtellar XR Topiramate (Topamax) Trokendi XR Zonisamide (Zonegran) Pregabalin (Lyrica) Vigabatrin (Sabril) Lacosamide (Vimpat) Rufinamide (Banzel) ACTH (Acthar) Clobazam (Onfi) Retigabine (Potiga) Perampanel (Fycompa) Eslicarbazepine (Aptiom) Brevetiracetam Epidiolex

44 Side effects can be unpredictable. Some are dose dependent, others occur regardless of dose Newer medications generally have fewer cognitive effects Behavior and mood changes are often difficult to sort out and are not necessarily dose-related Long term effects are unclear, but even mild side effects can have a significant impact Report any physical, cognitive, mood or behavioral changes to student s family and to health care provider as requested

45 Dose-related/toxic: Blurry vision Dizziness lightheadedness Sedation Slowed thinking Feeling disoriented Coordination problems Unsteady walking Drug-related: Cognitive problems Fatigue Weight gain or loss Cosmetic acne, excessive hairiness or hair loss Hyperactivity Slowed movements Personality changes Mood changes, depression

46 Rash Prolonged fever Severe sore throat Mouth ulcers Easy bruising Weakness Excessive fatigue Swollen glands Lack of appetite Increased seizures Contact Child s Healthcare Provider

47 In most situations, generic forms of AEDs are appropriate Change in seizures or side effects may occur with some drugs Switching between formulations is the major concern From brand to generic or generic to brand From one generic manufacturer to another

48 Considered for people with refractory epilepsy Surgical evaluations: Video EEG monitoring, neuropsychological testing, imaging (i.e., MRI, SPECT, PET), MEG Different types of surgery: focal resection (temporal lobectomy most common) lesionectomy, Hemispherectomy, corpus callosotomy

49 Ketogenic Diet: The ketogenic diet is a high-fat, adequateprotein, low-carbohydrate diet that in medicine is used primarily to treat difficult-to-control (refractory) epilepsy Modified Atkins Diet: The modified Atkins diet is a modification of the traditional ketogenic diet, mostly by families who stopped ketogenic diet for many years and eventually stopped weighing and measuring foods Low Glycemic Diet: The low glycemic diet is a variation of a lowcarbohydrate diet used to treat children who have epilepsy. The treatment was developed in 2002 as a less restrictive alternative to the ketogenic diet. The difference being weights in fats rather than grams in keto diet.

50 Produces using diet high in fat, low in carbohydrate, adequate protein Easiest to use in children with control of food choices Effective for all seizure types Usually requires hospitalization to start strict diet Compliance may be problematic Side effects can include constipation, metabolic acidosis, weight changes, kidney stones

51 A programmable pulse generator implanted subcutaneously in upper left chest Electrode wrapped around the left vagus nerve Side effects at time of stimulation may include hoarseness, coughing and shortness of breath Settings or dose of stimulation is preprogrammed during clinic visits

52 RNS is a new treatment for focal onset seizures that are uncontrolled with medication. RNS detects brain electrical activity that could lead to a seizure. Neurostimulator is placed under the scalp, in the skull, leads are positioned at the seizure focus and connected to the stimulator. Neurostimulator is programed by physician and brain activity is monitored. Brief pulses of stimulation are delivered that are not felt.

53 Act 48 continuing education credits Training is Free Program is approximately 45 minutes and will instruct school personnel how to: Recognize signs and symptoms of seizure disorder Administer proper seizure first aid Provide emotional support for the child with epilepsy Build a favorable social climate for the child with epilepsy Teach epilepsy prevention and safety

54 The Epilepsy Foundation Eastern PA is a non-profit 501 (3) voluntary health agency whose mission is to lead the fight to stop seizures, find a cure and overcome challenges created by epilepsy. We choose to fulfill that mission by meeting the non-medical needs for people affected by epilepsy/seizure disorder to enhance their lives and build supportive communities. EFEPA fulfills this mission through education, support and advocacy for people with epilepsy and their families in 18 counties in eastern PA. Berks, Bucks, Carbon, Chester, Delaware, Lackawanna, Lancaster, Lehigh, Luzerne, Monroe, Montgomery, Northampton, Philadelphia, Pike, Schuylkill, Susquehanna, Wayne, Wyoming

55 919 Walnut Street Suite 700 Philadelphia, Pa