+Epilepsy and School: Beyond Surviving & on to success

Presented by: Presented by:

Jessica Morales, BAJessica Morales, BA

Director of Epilepsy Education Director of Epilepsy Education

Epilepsy Foundation Metropolitan NewEpilepsy Foundation Metropolitan New YorkYork

+ Objectives

Knowing how best to communicate common seizure Knowing how best to communicate common seizure types and their possible impact to teachers and stafftypes and their possible impact to teachers and staff

Know how to teach appropriate first aidKnow how to teach appropriate first aid Set up guidelines to help staff recognize when a seizure Set up guidelines to help staff recognize when a seizure

is a medical emergencyis a medical emergency How to best provide social and academic supportHow to best provide social and academic support

+ How to talk about Epilepsy… Try to schedule a meeting with the staff that will be

working with your child. Be prepared with valid up to date information Always try to personalize to your child and his or her

needs.

+ What is a Seizure?A brief, excessive discharge of electricalA brief, excessive discharge of electricalactivity in the brain that alters one or more activity in the brain that alters one or more of the following:of the following: MovementMovement Sensation Sensation BehaviorBehavior AwarenessAwareness

+ What is Epilepsy?

Epilepsy is a chronic neurological disorder that is Epilepsy is a chronic neurological disorder that is characterized by a tendency to have characterized by a tendency to have recurrentrecurrent seizures.seizures.

Epilepsy is also known as a “seizure disorder.”Epilepsy is also known as a “seizure disorder.”

+ Epilepsy is Common

2.7 million Americans have epilepsy2.7 million Americans have epilepsy 300,000 people have a first convulsion each year300,000 people have a first convulsion each year 326,000 children through age 14 have epilepsy326,000 children through age 14 have epilepsy 45,000 children under 15 develop epilepsy each year45,000 children under 15 develop epilepsy each year

+ Did You Know …… Most seizures are not medical emergenciesMost seizures are not medical emergencies Students may not be aware they they are having a Students may not be aware they they are having a

seizure and may not remember what happenedseizure and may not remember what happened Epilepsy is not contagiousEpilepsy is not contagious Epilepsy is not a form of mental illnessEpilepsy is not a form of mental illness Students almost never die or have brain damage during Students almost never die or have brain damage during

a seizurea seizure A student can’t swallow his/her tongue during a seizureA student can’t swallow his/her tongue during a seizure

+ Common Causes of Epilepsy

The cause is unknown for c.70% of people The cause is unknown for c.70% of people with epilepsy. with epilepsy.

For the remaining 30%, some identifiable For the remaining 30%, some identifiable causes are:causes are: Brain trauma (such as stroke, physical injury )Brain trauma (such as stroke, physical injury ) Brain tumorsBrain tumors Poisoning (lead)Poisoning (lead) Infections of the brain (meningitis, encephalitis)Infections of the brain (meningitis, encephalitis) Brain injury at birthBrain injury at birth Abnormal brain developmentAbnormal brain development

+ Seizure Types Generalized SeizuresGeneralized Seizures

Involve the entire brainInvolve the entire brain Loss of consciousnessLoss of consciousness Symptoms may include convulsions, staring, muscle spasms and Symptoms may include convulsions, staring, muscle spasms and

fallsfalls Partial SeizuresPartial Seizures

Involve only part of the brainInvolve only part of the brain Altered or no loss of consciousnessAltered or no loss of consciousness May spread & generalizeMay spread & generalize Symptoms are related to the part of the brain affectedSymptoms are related to the part of the brain affected

+ Absence Seizures

Brief pause in activity with blank stare Brief pause in activity with blank stare Brief lapse of awarenessBrief lapse of awareness Possible chewing or blinking motionsPossible chewing or blinking motions Usually lasts 1 to 10 secondsUsually lasts 1 to 10 seconds May occur many times a day and/or clusterMay occur many times a day and/or cluster Often confused with:Often confused with:

DaydreamingDaydreaming Lack of attention (ADD, ADHD)Lack of attention (ADD, ADHD) Work avoidanceWork avoidance Difficulty learningDifficulty learning

+ Generalized Tonic-Clonic

May begin with a sudden, hoarse cryMay begin with a sudden, hoarse cry Loss of consciousness and fallLoss of consciousness and fall Convulsion with stiffening of arms & legs followed by rhythmic jerkingConvulsion with stiffening of arms & legs followed by rhythmic jerking May have shallow breathing and/or droolingMay have shallow breathing and/or drooling Skin, nails, lips may turn blueSkin, nails, lips may turn blue Generally lasts less than 5 minutesGenerally lasts less than 5 minutes May lose bowel or bladder controlMay lose bowel or bladder control Usually followed by some confusion, headache, fatigue, soreness Usually followed by some confusion, headache, fatigue, soreness

and/or speech difficultyand/or speech difficulty

+ First Aid for Tonic-Clonic Seizures

Stay calm & track timeStay calm & track time Check for medical IDCheck for medical ID Protect from hazardsProtect from hazards Turn student on sideTurn student on side Cushion headCushion head Stay with the student until alertStay with the student until alert Provide emotional supportProvide emotional support Document seizure activityDocument seizure activity

+ DO NOT……

Put anything in the student’s mouth Put anything in the student’s mouth during a seizureduring a seizure

Administer Administer CPRCPR or or Heimlich Heimlich during during seizure, must wait until it is over.seizure, must wait until it is over.

Hold down or restrain during a seizureHold down or restrain during a seizure Attempt to give oral medications, food or Attempt to give oral medications, food or

drink during a seizuredrink during a seizure

+ Tonic-Clonic Seizures as a Medical Emergency

First time seizureFirst time seizure Convulsive seizure lasting longer than 5 minutesConvulsive seizure lasting longer than 5 minutes Repeated seizuresRepeated seizures Acute change in seizure patternAcute change in seizure pattern The student is injured, has diabetes or is pregnantThe student is injured, has diabetes or is pregnant The seizure occurs in waterThe seizure occurs in water Normal breathing does not resumeNormal breathing does not resume Parents have requested emergency evaluationParents have requested emergency evaluation

+Convulsive Seizure in a

Wheelchair Do not remove from wheelchair unless absolutely Do not remove from wheelchair unless absolutely

necessarynecessary Secure wheelchair to prevent movementSecure wheelchair to prevent movement Fasten seatbelt (loosely) to prevent fallFasten seatbelt (loosely) to prevent fall Protect & support headProtect & support head Ensure breathing is unobstructed & allow secretions to Ensure breathing is unobstructed & allow secretions to

flow flow Pad wheelchair to prevent injuries to limbsPad wheelchair to prevent injuries to limbs Follow relevant seizure first aid protocolFollow relevant seizure first aid protocol

+ Convulsive Seizure on a School Bus

Safely pull over & stop busSafely pull over & stop bus Place child on side across seat facing away from back Place child on side across seat facing away from back

seat or in aisle if necessaryseat or in aisle if necessary Follow appropriate seizure first aid protocol for this Follow appropriate seizure first aid protocol for this

student until seizure ends and consciousness is student until seizure ends and consciousness is regainedregained

Continue to destination or follow school policyContinue to destination or follow school policy Call for emergency assistance if seizure is longer than Call for emergency assistance if seizure is longer than

5 minutes5 minutes

+ Seizures in Water

Support head so that both the mouth & nose are Support head so that both the mouth & nose are always above wateralways above water

Remove student from the water at onceRemove student from the water at once If the student is not breathing, begin rescue breathing If the student is not breathing, begin rescue breathing

after seizure has passed.after seizure has passed. Always transport to emergency roomAlways transport to emergency room

+ Seizure Action Plan

• Establish a seizure action plan for each Establish a seizure action plan for each student diagnosed with epilepsystudent diagnosed with epilepsy

• Establish a seizure action plan for Establish a seizure action plan for anyone having a first time seizureanyone having a first time seizure

• Follow seizure emergency definition Follow seizure emergency definition and protocol as defined by the and protocol as defined by the healthcare provider in the seizure healthcare provider in the seizure action planaction plan

+ Seizure Action Plan

+ Simple Partial Seizures

Full awareness is maintainedFull awareness is maintained May observe rhythmic movements (arm, face, leg twitching)May observe rhythmic movements (arm, face, leg twitching) Sensory symptoms (tingling, weakness, upset stomach, Sensory symptoms (tingling, weakness, upset stomach,

hallucinations)hallucinations) Psychic symptoms (déjà vu, hallucinations, feeling of fear or Psychic symptoms (déjà vu, hallucinations, feeling of fear or

anxiety, or a feeling they can’t explain)anxiety, or a feeling they can’t explain) Short durationShort duration Often confused with acting out, mystical experiences, Often confused with acting out, mystical experiences,

psychosomatic illnesspsychosomatic illness

+ Complex Partial Seizures

Awareness impaired with inability to respondAwareness impaired with inability to respond

Often begins with a blank, dazed stareOften begins with a blank, dazed stare

May observe repetitive, purposeless and/or disoriented movementsMay observe repetitive, purposeless and/or disoriented movements

Clumsy or disoriented movements, aimless walking, picking things Clumsy or disoriented movements, aimless walking, picking things up, nonsensical speech or lip smackingup, nonsensical speech or lip smacking

ℴ Short durationℴAggressive behavior

ℴMay be followed by fatigue, headache or nausea

ℴ May become combative if restrained

ℴ Often confused with:ℴ Drunkenness or drug abuseℴ Aggressive behavior

+ Complex Partial SeizureFirst Aid

Stay calm & reassure othersStay calm & reassure others Track timeTrack time Check for medical IDCheck for medical ID Do not try to restrainDo not try to restrain Gently direct away from hazardsGently direct away from hazards Do not expect verbal instructions to be obeyedDo not expect verbal instructions to be obeyed Stay with the student until fully alertStay with the student until fully alert If seizure last longer than 30 minutes, call EMSIf seizure last longer than 30 minutes, call EMS

+ Seizure Triggers

Factors that may increase the likelihood of a seizure in students Factors that may increase the likelihood of a seizure in students with a diagnosis of epilepsy:with a diagnosis of epilepsy: Missed medicationMissed medication Overheating/overexertionOverheating/overexertion dehydrationdehydration Stress/anxietyStress/anxiety Extreme fatigueExtreme fatigue Poor diet/missed mealsPoor diet/missed meals Hormonal changesHormonal changes IllnessIllness Alcohol or drug useAlcohol or drug use Drug interactions (OTC, prescribed, herbals or supplements)Drug interactions (OTC, prescribed, herbals or supplements)

+ Treatment

MedicationMedication SurgerySurgery Vagus Nerve StimulationVagus Nerve Stimulation Ketogenic DietKetogenic Diet Alternative TherapiesAlternative Therapies

* It’s important to share with teachers and staff in direct * It’s important to share with teachers and staff in direct contact with your child what kind of treatment they are contact with your child what kind of treatment they are under or if any new treatment is started. under or if any new treatment is started.

+ Medication Side Effects Slow motor response Slow motor response

Low self-esteemLow self-esteem

HyperactivityHyperactivity

UnresponsivenessUnresponsiveness

StaringStaring

Attention and memory deficitsAttention and memory deficits

Poor reading skillsPoor reading skills

Impaired auditory-perceptual and language processing abilitiesImpaired auditory-perceptual and language processing abilities

Mood swingsMood swings

+ Prescription Medication

Medications (New Medication for Epilepsy)Medications (New Medication for Epilepsy)

Although AEDs do not cure epilepsy, they do, in many cases, help to keep the Although AEDs do not cure epilepsy, they do, in many cases, help to keep the seizures controlled, thus enabling the patient to have a better quality of life.seizures controlled, thus enabling the patient to have a better quality of life.KeppraKeppra Lyrica (pregabalin)Lyrica (pregabalin) Trileptal (oxcarbazepine)Trileptal (oxcarbazepine) Keppra (levetiracetam)Keppra (levetiracetam) Zonegran (zonisamide)Zonegran (zonisamide) Topamax (topiramateTopamax (topiramate) ) Gabitril (tiagabine hydrochlorine)Gabitril (tiagabine hydrochlorine) Lamictal (lamotrigineLamictal (lamotrigine) ) Diastat (diazepam rectal gel)Diastat (diazepam rectal gel)

+ Brain Surgery

Lobectomy- Lobectomy- All or part of the left or right lobe (Frontal, All or part of the left or right lobe (Frontal, Temporal, Occipital, Parietal) may be surgically removed. These Temporal, Occipital, Parietal) may be surgically removed. These areas are common sites for simple and complex partial seizures. areas are common sites for simple and complex partial seizures.

Hemispherectomy Hemispherectomy – Removal of one half of the brain.– Removal of one half of the brain. Corpus Callosotomy-Corpus Callosotomy- Separating the Corpus Callosum ( a nerve Separating the Corpus Callosum ( a nerve

bridge that connect the two halves of the brain).bridge that connect the two halves of the brain). Sub-pial Transection-Sub-pial Transection- Instead of removing affected tissue, the Instead of removing affected tissue, the

surgeon severs the parallel connection between cells in the surgeon severs the parallel connection between cells in the affected area.affected area.

+ Vagus Nerve Stimulator Device implanted just under the skin in the chest with Device implanted just under the skin in the chest with

wires that attach to the vagus nerve in the neckwires that attach to the vagus nerve in the neck Delivers intermittent electrical stimulation to the Vagus Delivers intermittent electrical stimulation to the Vagus

Nerve in the neck that relays impulses to widespread Nerve in the neck that relays impulses to widespread areas of the brainareas of the brain

Used primarily to treat partial seizures when medication Used primarily to treat partial seizures when medication is not effectiveis not effective

Uses a special magnet to activate the device that may Uses a special magnet to activate the device that may help student to prevent or reduce the severity of an help student to prevent or reduce the severity of an oncoming seizureoncoming seizure

Student usually still requires antiseizure medicationStudent usually still requires antiseizure medication

+ The Ketogenic Diet

Based on a finding that burning fat for energy has an Based on a finding that burning fat for energy has an antiseizure effectantiseizure effect

Used primarily to treat childhood epilepsy that has not Used primarily to treat childhood epilepsy that has not responded to antiseizure medicationsresponded to antiseizure medications

Includes high fat content, no sugar and low Includes high fat content, no sugar and low carbohydrate & protein intakecarbohydrate & protein intake

Requires strong family, school & caregiver commitment Requires strong family, school & caregiver commitment – no cheating allowed!– no cheating allowed!

Is a medical treatment – not a fad diet (Atkins)Is a medical treatment – not a fad diet (Atkins)

+ Diazepam Rectal Gel

Used in acute or emergency situations to stop a Used in acute or emergency situations to stop a seizure that will not stop on its ownseizure that will not stop on its own

Approved by FDA for use by parents & non-Approved by FDA for use by parents & non-licensed personnellicensed personnel

State/school district regulations often govern use State/school district regulations often govern use in schoolsin schools

School nurse decides whether administration can School nurse decides whether administration can be delegated based on local policy and be delegated based on local policy and assessment of safety issuesassessment of safety issues

+Impact on Learning

Most students with epilepsy have IQ’s within the Most students with epilepsy have IQ’s within the normal rangenormal range

Risk of learning problems is 3X greater than Risk of learning problems is 3X greater than averageaverage

May have difficulty with learning, memory, May have difficulty with learning, memory, attention & concentrationattention & concentration

May be eligible for special education and related May be eligible for special education and related servicesservices

Students who achieve seizure control quickly, Students who achieve seizure control quickly, with few medication side effects, have the best with few medication side effects, have the best chance for normal educational achievementchance for normal educational achievement

+ Impact on Learning, cont.

Seizures and medication side effects may cause short-term Seizures and medication side effects may cause short-term memory problemsmemory problems

After a seizure, coursework may need to be re-taughtAfter a seizure, coursework may need to be re-taught Seizure activity, without physical symptoms, may still affect Seizure activity, without physical symptoms, may still affect

learninglearning Medication side effect include fatigue, an inability to Medication side effect include fatigue, an inability to

maintain attention and concentration difficulties maintain attention and concentration difficulties Students with epilepsy are more likely to suffer from low Students with epilepsy are more likely to suffer from low

self-esteem and depressionself-esteem and depression School difficulties are not always related to epilepsySchool difficulties are not always related to epilepsy

+ Impact on Psychosocial Development

There is an association between seizures/epilepsy There is an association between seizures/epilepsy and:and:

- Impaired self-image/self-confidence- Impaired self-image/self-confidence (shame/embarrassment)(shame/embarrassment) - Low self-esteem- Low self-esteem - Anxiety- Anxiety - Delayed social development- Delayed social developmentOnce seizures are under control, the psychosocial impact may Once seizures are under control, the psychosocial impact may

be more significant than the medical impact.be more significant than the medical impact.

+ Impact on Behavior

Behavior problems are more frequent possibly Behavior problems are more frequent possibly due to:due to:

- Underlying brain damage- Underlying brain damage - Medication side effects- Medication side effects - Anxiety and low self-esteem- Anxiety and low self-esteem - Parental overprotection, indulgence- Parental overprotection, indulgence

+ Assessment Strategies

Standardized intelligence testsStandardized intelligence tests

Neuropsychological testingNeuropsychological testing

Request more frequent reevaluation, particularly after Request more frequent reevaluation, particularly after stabilization of newly diagnosed studentstabilization of newly diagnosed student

+Being Supportive

Stay calm during seizure eventsStay calm during seizure events Keep a copy of the student’s seizure action plan Keep a copy of the student’s seizure action plan Include the seizure action plan in the student’s IEPInclude the seizure action plan in the student’s IEP Know student’s medications and their possible side Know student’s medications and their possible side

effectseffects Communicate with parentsCommunicate with parents

+Parent-School

Communication Set up a log for communicating with parent/guardian Set up a log for communicating with parent/guardian

on a daily or weekly basison a daily or weekly basis Regularly note physical, emotional or cognitive Regularly note physical, emotional or cognitive

changeschanges Create a “substitute” folder with seizure action plan Create a “substitute” folder with seizure action plan

and other relevant information.and other relevant information.

+The Other Students

Educate peers -- encourage them to tell their friends – Educate peers -- encourage them to tell their friends – it’s the best way to prevent feelings of alienation. They it’s the best way to prevent feelings of alienation. They are…are…

Your best allies to reduce stigmaYour best allies to reduce stigma Your best allies to increase acceptanceYour best allies to increase acceptance Your best allies to create a safe environment for your Your best allies to create a safe environment for your

students with epilepsystudents with epilepsy

+ Tips For Teachers

Avoid overprotection Avoid overprotection Encourage independenceEncourage independenceInclude the student in as many Include the student in as many activities as possibleactivities as possible

Encourage positive peer Encourage positive peer interactioninteraction

+Contact Information

Epilepsy Foundation Metropolitan New YorkEpilepsy Foundation Metropolitan New York

www.efmny.org www.efmny.org www.epilepsyfoundation.org www.epilepsyfoundation.org

Jessica Morales / Director of Epilepsy Education Jessica Morales / Director of Epilepsy Education www.jmorales@efmny.org www.jmorales@efmny.org

257 Park Avenue South, Suite 302257 Park Avenue South, Suite 302New York, NY 10010New York, NY 10010

212-677-8550212-677-8550