Epilepsy and School: Beyond Surviving & on to success

1. Epilepsy and School: Beyond Surviving & on to success Presented by: Jessica Morales, BA Director of Epilepsy Education Epilepsy Foundation Metropolitan NewYork

2. Objectives • Knowing how best to communicate common seizure types and their possible impact to teachers and staff • Know how to teach appropriate first aid • Set up guidelines to help staff recognize when a seizure is a medical emergency • How to best provide social and academic support

3. 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.

4. What is a Seizure? A brief, excessive discharge of electrical activity in the brain that alters one or more of the following: • Movement • Sensation • Behavior • Awareness

5. What is Epilepsy? • Epilepsy is a chronic neurological disorder that is characterized by a tendency to have recurrent seizures. • Epilepsy is also known as a “seizure disorder.”

6. Epilepsy is Common • 2.7 million Americans have epilepsy • 300,000 people have a first convulsion each year • 326,000 children through age 14 have epilepsy • 45,000 children under 15 develop epilepsy each year

7. Did You Know …… • Most seizures are not medical emergencies • Students may not be aware they they are having a seizure and may not remember what happened • Epilepsy is not contagious • Epilepsy is not a form of mental illness • Students almost never die or have brain damage during a seizure • A student can’t swallow his/her tongue during a seizure

8. Common Causes of Epilepsy • The cause is unknown for c.70% of people with epilepsy. • For the remaining 30%, some identifiable causes are: • Brain trauma (such as stroke, physical injury ) • Brain tumors • Poisoning (lead) • Infections of the brain (meningitis, encephalitis) • Brain injury at birth • Abnormal brain development

9. Seizure Types • Generalized Seizures • Involve the entire brain • Loss of consciousness • Symptoms may include convulsions, staring, muscle spasms and falls • Partial Seizures • Involve only part of the brain • Altered or no loss of consciousness • May spread & generalize • Symptoms are related to the part of the brain affected

10. Absence Seizures • Brief pause in activity with blank stare • Brief lapse of awareness • Possible chewing or blinking motions • Usually lasts 1 to 10 seconds • May occur many times a day and/or cluster • Often confused with: • Daydreaming • Lack of attention (ADD, ADHD) • Work avoidance • Difficulty learning

11. Generalized Tonic-Clonic • May begin with a sudden, hoarse cry • Loss of consciousness and fall • Convulsion with stiffening of arms & legs followed by rhythmic jerking • May have shallow breathing and/or drooling • Skin, nails, lips may turn blue • Generally lasts less than 5 minutes • May lose bowel or bladder control • Usually followed by some confusion, headache, fatigue, soreness and/or speech difficulty

12. First Aid for Tonic-Clonic Seizures • Stay calm & track time • Check for medical ID • Protect from hazards • Turn student on side • Cushion head • Stay with the student until alert • Provide emotional support • Document seizure activity

13. DO NOT…… • Put anything in the student’s mouth during a seizure • Administer CPR or Heimlich during seizure, must wait until it is over. • Hold down or restrain during a seizure • Attempt to give oral medications, food or drink during a seizure

14. Tonic-Clonic Seizures as a Medical Emergency • First time seizure • Convulsive seizure lasting longer than 5 minutes • Repeated seizures • Acute change in seizure pattern • The student is injured, has diabetes or is pregnant • The seizure occurs in water • Normal breathing does not resume • Parents have requested emergency evaluation

15. Convulsive Seizure in a Wheelchair • Do not remove from wheelchair unless absolutely necessary • Secure wheelchair to prevent movement • Fasten seatbelt (loosely) to prevent fall • Protect & support head • Ensure breathing is unobstructed & allow secretions to flow • Pad wheelchair to prevent injuries to limbs • Follow relevant seizure first aid protocol

16. Convulsive Seizure on a School Bus • Safely pull over & stop bus • Place child on side across seat facing away from back seat or in aisle if necessary • Follow appropriate seizure first aid protocol for this student until seizure ends and consciousness is regained • Continue to destination or follow school policy • Call for emergency assistance if seizure is longer than 5 minutes

17. Seizures in Water • Support head so that both the mouth & nose are always above water • Remove student from the water at once • If the student is not breathing, begin rescue breathing after seizure has passed. • Always transport to emergency room

18. Seizure Action Plan • Establish a seizure action plan for each student diagnosed with epilepsy • Establish a seizure action plan for anyone having a first time seizure • Follow seizure emergency definition and protocol as defined by the healthcare provider in the seizure action plan

19. Seizure Action Plan

20. Simple Partial Seizures • Full awareness is maintained • May observe rhythmic movements (arm, face, leg twitching) • Sensory symptoms (tingling, weakness, upset stomach, hallucinations) • Psychic symptoms (déjà vu, hallucinations, feeling of fear or anxiety, or a feeling they can’t explain) • Short duration • Often confused with acting out, mystical experiences, psychosomatic illness

21. Complex Partial Seizures • Short duration • Aggressive behavior • May be followed by fatigue, headache or nausea • May become combative if restrained • Often confused with: • Drunkenness or drug abuse • Aggressive behavior • Awareness impaired with inability to respond • Often begins with a blank, dazed stare • May observe repetitive, purposeless and/or disoriented movements • Clumsy or disoriented movements, aimless walking, picking things up, nonsensical speech or lip smacking

22. Complex Partial SeizureFirst Aid • Stay calm & reassure others • Track time • Check for medical ID • Do not try to restrain • Gently direct away from hazards • Do not expect verbal instructions to be obeyed • Stay with the student until fully alert • If seizure last longer than 30 minutes, call EMS

23. Seizure Triggers • Factors that may increase the likelihood of a seizure in students with a diagnosis of epilepsy: • Missed medication • Overheating/overexertion • dehydration • Stress/anxiety • Extreme fatigue • Poor diet/missed meals • Hormonal changes • Illness • Alcohol or drug use • Drug interactions (OTC, prescribed, herbals or supplements)

24. Treatment • Medication • Surgery • Vagus Nerve Stimulation • Ketogenic Diet • Alternative Therapies * It’s important to share with teachers and staff in direct contact with your child what kind of treatment they are under or if any new treatment is started.

25. Medication Side Effects • Slow motor response • Low self-esteem • Hyperactivity • Unresponsiveness • Staring • Attention and memory deficits • Poor reading skills • Impaired auditory-perceptual and language processing abilities • Mood swings

26. Prescription Medication • Medications (New Medication for Epilepsy) 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. Keppra Lyrica (pregabalin) Trileptal (oxcarbazepine) Keppra (levetiracetam) Zonegran (zonisamide) Topamax (topiramate) Gabitril (tiagabine hydrochlorine) Lamictal (lamotrigine) Diastat (diazepam rectal gel)

27. Brain Surgery • Lobectomy- All or part of the left or right lobe (Frontal, Temporal, Occipital, Parietal) may be surgically removed. These areas are common sites for simple and complex partial seizures. • Hemispherectomy – Removal of one half of the brain. • Corpus Callosotomy- Separating the Corpus Callosum ( a nerve bridge that connect the two halves of the brain). • Sub-pial Transection- Instead of removing affected tissue, the surgeon severs the parallel connection between cells in the affected area.

28. Vagus Nerve Stimulator • Device implanted just under the skin in the chest with wires that attach to the vagus nerve in the neck • Delivers intermittent electrical stimulation to the Vagus Nerve in the neck that relays impulses to widespread areas of the brain • Used primarily to treat partial seizures when medication is not effective • Uses a special magnet to activate the device that may help student to prevent or reduce the severity of an oncoming seizure • Student usually still requires antiseizure medication

29. The Ketogenic Diet • Based on a finding that burning fat for energy has an antiseizure effect • Used primarily to treat childhood epilepsy that has not responded to antiseizure medications • Includes high fat content, no sugar and low carbohydrate & protein intake • Requires strong family, school & caregiver commitment – no cheating allowed! • Is a medical treatment – not a fad diet (Atkins)

30. Diazepam Rectal Gel • Used in acute or emergency situations to stop a seizure that will not stop on its own • Approved by FDA for use by parents & non-licensed personnel • State/school district regulations often govern use in schools • School nurse decides whether administration can be delegated based on local policy and assessment of safety issues

31. Impact on Learning • Most students with epilepsy have IQ’s within the normal range • Risk of learning problems is 3X greater than average • May have difficulty with learning, memory, attention & concentration • May be eligible for special education and related services • Students who achieve seizure control quickly, with few medication side effects, have the best chance for normal educational achievement

32. Impact on Learning, cont. • Seizures and medication side effects may cause short-term memory problems • After a seizure, coursework may need to be re-taught • Seizure activity, without physical symptoms, may still affect learning • Medication side effect include fatigue, an inability to maintain attention and concentration difficulties • Students with epilepsy are more likely to suffer from low self-esteem and depression • School difficulties are not always related to epilepsy

33. Impact on Psychosocial Development • There is an association between seizures/epilepsy and: - Impaired self-image/self-confidence (shame/embarrassment) - Low self-esteem - Anxiety - Delayed social development Once seizures are under control, the psychosocial impact may be more significant than the medical impact.

34. Impact on Behavior • Behavior problems are more frequent possibly due to: - Underlying brain damage - Medication side effects - Anxiety and low self-esteem - Parental overprotection, indulgence

35. Assessment Strategies • Standardized intelligence tests • Neuropsychological testing • Request more frequent reevaluation, particularly after stabilization of newly diagnosed student

36. Being Supportive • Stay calm during seizure events • Keep a copy of the student’s seizure action plan • Include the seizure action plan in the student’s IEP • Know student’s medications and their possible side effects • Communicate with parents

37. Parent-School Communication • Set up a log for communicating with parent/guardian on a daily or weekly basis • Regularly note physical, emotional or cognitive changes • Create a “substitute” folder with seizure action plan and other relevant information.

38. The Other Students • Educate peers -- encourage them to tell their friends – it’s the best way to prevent feelings of alienation. They are… • Your best allies to reduce stigma • Your best allies to increase acceptance • Your best allies to create a safe environment for your students with epilepsy

39. Tips For Teachers • Avoid overprotection • Encourage independence • Include the student in as many activities as possible • Encourage positive peer interaction

40. Contact Information Epilepsy Foundation Metropolitan New York www.efmny.org www.epilepsyfoundation.org Jessica Morales / Director of Epilepsy Education www.jmorales@efmny.org 257 Park Avenue South, Suite 302 New York, NY 10010 212-677-8550