1 Excelling with Epilepsy Presented by or Tracy Glauser, M.D. Sponsored by:

2 What is Excelling with Epilepsy? Camper Component – The Scratch session is led by Hapa, a popular disc jockey who also has epilepsy. Hapa teaches the basics of working a turntable and how to overcome challenges with courage and confidence Parent Component – Provide information to help you work with your physician to more effectively manage your child’s seizures and improve overall well-being Program sponsored by Ortho-McNeil Neurologics ®, Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc.

3 What is Epilepsy? Epilepsy is a neurological disorder that consists of recurrent seizures –Two or more seizures in one’s life not related to other causes such as alcohol or drug withdrawal A seizure is a brief disruption of electrical activity in the brain According to the Epilepsy Foundation, 70% of cases are unknown or presumed genetic. 30% are symptomatic (meaning linked to an identifiable disease or brain abnormality): –Brain trauma or lesions –Infections, high fevers –Birth injuries –Congenital malformation There are various types of seizures (i.e. generalized, partial, status epilepticus)

4 Prevalence Nearly 3 million Americans of all ages are living with epilepsy 30 percent of people with epilepsy are children under 18 Every year, approximately 200,000 new Americans will develop seizures and epilepsy for the first time Up to 30 percent of people with epilepsy will need a long-term antiepileptic drug (AED) treatment to control their seizures

5 Seizure Triggers and Precipitants Missed or late medications Stress/anxiety Hormonal changes Alcohol or recreational drugs Drug interactions Flashing lights Sleep deprivation

6 Finding the Right Treatment Plan Ultimate goal of therapy is to achieve complete freedom from seizures, combined with minimal drug-induced side effects 75% of people who are seizure free on medication for 2 to 5 years can be successfully withdrawn from medication For some children, epilepsy is a temporary problem, outgrown after a few years

7 Treatment Considerations Children take the same antiepileptic medications as adults do. Medication may be prescribed as tablets, sprinkles, capsules or in syrup Whenever possible, healthcare professionals try to control seizures with one drug. Some children may require more than one medication Not having seizures does not mean that the medication is no longer needed. Most children require a minimum of several years of therapy. Always ask the doctor before stopping antiepileptic medication

8 Treatment Options Antiepileptic Drugs (AEDs) Surgery Ketogenic Diet Vagus Nerve Stimulation

9 Medications Older AEDs PhenobarbitalPhenytoinCarbamazepinePrimidone Divalproex sodium/valproic acid Ethosuximide

10 Medications GabapentinLamotrigineTiagabineTopiramateOxcarbazepineLevetiracetamZonisamidePregabalinFelbamate Newer AEDs

11 TOPAMAX® Important Safety Information for Epilepsy Serious risks associated with TOPAMAX include lowered bicarbonate levels in the blood resulting in an increase in the acidity of the blood (metabolic acidosis), and hyperventilation (rapid, deep breathing) or fatigue. More severe symptoms of metabolic acidosis could include irregular heartbeat or changes in the level of alertness. Chronic, untreated metabolic acidosis may increase the risk for kidney stones or bone disease. Your doctor may want to do simple blood tests to measure bicarbonate levels. Other serious risks include increased eye pressure (glaucoma), decreased sweating, increased body temperature, kidney stones, sleepiness, dizziness, confusion, and difficulty concentrating. Tell your doctor immediately if you have blurred vision or eye pain. More common side effects in adults are nervousness, coordination problems, fatigue, speech problems, slowed thinking, memory difficulty, tingling in arms and legs, and double vision; and in children, fatigue, loss of appetite, nervousness, memory difficulty, aggressive behavior, and weight loss. As monotherapy, the most common side effects of TOPAMAX (in the 400 mg/day group and at a rate higher than the 50 mg/day group) in adults were tingling in arms and legs, weight decrease, sleepiness, loss of appetite, dizziness, and difficulty with memory; and in children, weight decrease, upper respiratory tract infection, tingling in arms and legs, loss of appetite, diarrhea, and mood problems. In combination with other antiepileptic drugs (AEDs), the most common side effects of TOPAMAX in adults (200 to 400 mg/day) were sleepiness, dizziness, nervousness, loss of muscle coordination, fatigue, speech disorders and related problems, psychomotor slowing, abnormal vision, difficulty with memory, tingling in arms and legs, and double vision; and in children (5 to 9 mg/kg/day), fatigue, sleepiness, loss of appetite, nervousness, difficulty with concentration/attention, difficulty with memory, aggressive reaction, and weight decrease. Tell your doctor about other medications you take. Please see full U.S. Prescribing Information at

12 Considerations for Choosing an AED Identify seizure type and choose an appropriate AED Many children with epilepsy often experience co- existing health issues such as cognitive impairment, sleep disorders or migraine Let your doctor know about any other medications your child takes Ask about risks and benefits of the various AEDs. Stay in touch with your doctor about any side effects.

13 Risk and Benefits of AEDs Complete control with AEDs in ~70% of cases Side effects can be dose dependent while others can occur regardless Most common side effects include drowsiness, irritability, nausea, rash and clumsiness Parents of children with epilepsy should be familiar with potential side effects and report any issues to their healthcare professionals

14 Ketogenic Diet Introduced almost 80 years ago High fat, low carbohydrate, adequate protein The diet requires a team effort and is not a do-it- yourself treatment. It should always be monitored by a physician and dietitian May require 2-3 day fasting followed by strict diet Compliance may be problematic Side effects can include kidney stones, weight loss and blood abnormalities

15 Vagus Nerve Stimulation A programmable pulse generator implanted upper-left chest Electrode wrapped around the left vagus nerve in neck Works by sending regular small bursts of electrical energy to the vagus nerve, a large nerve in the neck that leads directly into the brain Side effects may include hoarseness, coughing and shortness of breath and occur during stimulation only Magnet may be used to give extra stimulation at onset of a seizure to try to shorten seizure length Approved in adults and children older than 12 with partial seizures who are resistant to AED treatment

16 Seizure Surgery May be considered after failing medications Evaluation includes video electroencephalogram monitoring Other tests may include Magnetic Resonance Imaging, Positron Emission Tomography and neuropsychological testing Procedures include focal resection, temporal lobectomy, frontal lobectomy, lesionectomy, hemispherectomy and corpus callosotomy Postsurgical seizure-free rates vary Not risk free

17 Communication is Key to Finding the Right Treatment Plan Patients and caregivers should: –Advocate for themselves –Strive for more individualized treatment plans –Seek second opinions when not achieving treatment goals –Raise their standards

18 Children and Epilepsy Families that are open and accepting, and that help the child build on strengths, can make a positive difference in the child's life A parent can take steps to help a child with epilepsy feel more comfortable at school: –Meet with your child's teacher at the beginning of each school year –Test for learning disabilities –Use videos, pamphlets and first aid presentations available from the Epilepsy Foundation Teens face unique challenges –Teens and driving –Teens and college

19 Parents’ Role in Helping your Child Manage Epilepsy Coordinate ongoing treatment with your child’s school and healthcare team –Avoid describing burden of child’s seizures in front of the child –Discuss seizures openly with your child and answer questions –Don’t make your child’s seizures a reason not to do activities or fail to discipline your child on that account Help create an environment in which your child can achieve his/her/your goals –Emphasize the positive; praise success –Build on things the child likes and can do –Encourage a special hobby or lessons to acquire a new skill –Encourage the child to be active and social –Consider asking your school for an Individualized Education Program

20 Consider Advocacy Programs Expressions of Courage ® –Visit expressionsofcourage.com to find out more about the program expressionsofcourage.com expressionsofcourage.com National Walk for Epilepsy –For information on how to get involved with the National Walk for Epilepsy visit epilepsyfoundation.org epilepsyfoundation.org

21 How You Can Create Awareness Take Charge of the Facts Friends and Family Campaign Speak Up Speak Out Visit for more information on these programswww.epilepsyfoundation.org

22 Summary Many people can get full control or significant reduction in seizures. Consult an epilepsy specialist if seizures are not controlled or well- being is compromised by medication-related side effects Be an advocate for your child with your physician, at your school, etc, and encourage your child to participate in advocacy/awareness programs Questions?