Frequently Asked Questions in Pediatric E pilepsy

1. Frequently AskedQuestions in Pediatric Epilepsy Lorraine M. Lazar, MD, PhD Pediatric Epilepsy Northeast Regional Epilepsy Group

2. Individualized answers may differ based on patient diversity

3. “My child doesn’t have epilepsy, right?” • “Epilepsy” • Repeated episodes of spontaneous electrical misfiring in the brain • Not due to temporary brain irritation (ex. high blood pressure, uncontrolled diabetes, alcohol / drug intoxication) • Misconceptions • Not “Cerebral Palsy”, “Cognitive Disability / Mental Retardation”, Fragile / Sickly • Not uncommon • 326,000 children in the U.S. < 15 years old have epilepsy • 200,000 new cases diagnosed each year

4. “What kind of epilepsy?”

5. “What caused my child’s epilepsy?” SYMPTOMATIC CAUSES IDIOPATHIC GENETIC

6. Chromosomal Abnormalities

8. “Does my child need to see a geneticist?” • “Chromosomal Microarray (CGH microarray)” • Tests for larger pieces of missing or extra DNA • “Whole exome genetic testing” • Tests for smaller variations in DNA

9. “Why did the seizures start now?” Age Related Onset Of Childhood Epilepsy Syndromes JME Juvenile Absence GTC on awakening Childhood Absence Rolandic Lennox-Gastaut Febrile Seizures Benign Myoclonic Infantile Spasms Early Epil Encephalopathy Neonatal seizures Age (yrs) at Seizure Onset

10. “Will medication stop my child’s seizures?” ~70 % controlled with 1 med ~15 % controlled with >1 med ~15 % uncontrolled Best chance for seizure control is if medication well matched to seizure type(s) Other non-medicationtherapies available Increasing Medication Options

11. “Are the medications safe?” * * * * * * * * *

12. “Will my child have to take medication forever?” • ~ 65 % of children 2 years seizure-free on medication will remain seizure free when medication stopped • If seizures restart off medication, usually stop again on med • Seizures that don’t recur off medication: • Benign Rolandic • Childhood Absence • Seizures that commonly recur off medication: • Lennox-Gastaut syndrome • Juvenile Myoclonic Epilepsy**

13. Factors associated with a higher risk of seizure relapse if medication is discontinued * * *

14. Increased seizure recurrence risk if neurologic exam or EEG abnormal

15. “How do I keep my child safe?” • Medication Compliance • Regular doctor’s appointments • Pill Sorter • Inform doctor of insurance issues • Avoid seizure triggers • sleep deprivation • missing medication (forgetting, running out) • illness/fever (clean hands when eating a must!) • excessive alcohol use, illicit drug use • flashing lights • stress/anxiety

16. Know Basic Seizure First Aid (at Home and School): Stay calm Time the seizure Roll onto side Move objects away Don’t restrain Don’t put anything in the mouth Be reassuring as seizure stops

17. Water Safety – minimize drowning hazard • Bathe under constant supervision (unlocked bathroom door) • Consider shower (with clear drain) over bath • Never swim alone • Wear life vest in murky water • Sports Safety: • Always wear appropriate sports safety gear (helmets a must!) • Avoid climbing heights > 10 ft without a harness • Avoid bicycling in open traffic

18. Travel Safety: • Avoid sleep deprivation • Carry medications on trips • Have enough medication to last the trip • For older teens, follow DMV laws for driving • Medication Safety: • Inform your epilepsy doctor of other medications being taken, whether prescribed or over-the-counter • Benadryl – can lower seizure threshhold

19. “Can my child die from a seizure?” • SUDEP – Sudden Unexpected Death of someone with Epilepsy, who was otherwise healthy. • Most common with certain seizure types if uncontrolled • Rare in children, more common in adults • Cause of death in SUDEP unclear • irregular heart rhythm? • suffocation from impaired breathing, fluid in the lungs, being face down on bedding? • Best prevention is to follow treatment recommendations, including take anti-seizure medication regularly

20. “Should my child see a seizure specialist?” YES!