Epilepsy And Seizure Disorders - Laramie, Wyoming
EpilepsyandSeizureDisordersA WyomingResourceGuidefor Parents
Notes and AcknowledgementsNotes to the reader:The information contained in this guide is not intended as, and is nota substitute for, professional medical advice. A child’s medical teamshould be consulted about all decisions regarding clinical care andtreatment. No pharmaceutical funding was used in the developmentof this guide.Throughout the text, we use the word “child”. Please understand thatwe use this term to refer to a person of any age between birth and 21years.Photograph acknowledgements:Many of the photographs in the Guide were taken by University ofWyoming, Public Relations, WIND staff, Project Access partners, parentsand appear courtesy of the Wyoming Institute for Disabilities.
Table of ContentsNotes and Acknowledgements(inside front cover)Introduction2Section 1: Understanding Epilepsy/Seizure Disorder3What is epilepsy/seizure disorder?What are the different kinds of epilepsy/seizure disorder?How is epilepsy/seizure disorder diagnosed?What causes epilepsy/seizure disorder?What might trigger a seizure?What are the treatment options?335666Section 2: Health Care for My Child—Access to Care/Access to Services8What do I need to know about taking care of my child?What organizations can help me find the help we need?How can I pay for or access the care my child needs?Who are the members of my child’s health care team?How can I assure the best health care for my child?810101516Section 3: Advocacy & SupportWhere can I find support from other parents like me?What do I need to know about my child attending school?How can I educate others about my child’s epilepsy/seizure disorder?ReferencesAppendix: Forms202023262728
2EPILEPSY AND SEIZURE DISORDER: A RESOURCE GUIDE FOR PARENTSWyoming Institute for DisabilitiesDept. 42981000 E. University Ave.Laramie, WY 82071Dear Parent or Caregiver,Children are one of life’s greatest gifts. As parents, we want to do all we can to nurture and take careof our children. As a parent of a child with epilepsy, also referred to as seizure disorders, I know weface the additional challenge of learning as much as we can about our child’s special needs. This guidewas written with you in mind to give you some very basic information, including an introduction toepilepsy and seizure disorders. It is not intended to provide medical advice. Any questions related tothe medical treatment of your child should always be addressed to your child’s pediatrician, familyphysician, or neurologist.While this guide may not provide all of the information you are looking for, it should help you beginyour search. The Guide includes information about the additional resources that we hope will be usefulas you begin this journey—a journey that is likely to evolve as you become more knowledgeable aboutyour child’s condition. Take information that applies and is valuable to you and your child.I would like to extend a warm thanks to the following individuals who made this guide possiblein Wyoming. The wonderful WIND staff, family, friends, and parents and children with epilepsywho submitted photos to produce our guide: Michelle Ecker, Jessica Rasmussen, and Lori Schaeffer.I would like to recognize the participation of Allison Sedlacek of the Colorado Epilepsy Foundationand Richard Leslie of the Wyoming Epilepsy Association, affiliates in the development and review ofthe Guide. The Guide would not be possible without the dedicated work of Cary Kreutzer, ProjectDirector and her staff of University of Southern California, and University Center for Excellencein Developmental Disabilities at the Childrens Hospital Los Angeles. A special thanks to Dr. DavidWheeler, the Director of the Wyoming Epilepsy Center, Wyoming Neurologic Associates, for hisparticipation in the Wyoming Access Team for his valuable advice and conference presentations. Thanksalso goes for the support of families who have a child with epilepsy. Finally, thanks to Athena Lickeland Lilly Zuniga, WIND Project Coordinators, Janet Perkins Corbett, Whitney Buckley-Dutton, andSara DiRienzo for editing and Elizabeth Ono Rahel for graphic design.Please use this guide as it helps in your life and the care of your child.Sincerely,Sandra Root-ElledgeAssociate Director
EPILEPSY AND SEIZURE DISORDER: A RESOURCE GUIDE FOR PARENTSUnderstanding Epilepsy/Seizure DisorderWhat is epilepsy/seizure disorder?*The brain contains billions of nerve cells calledneurons that communicate electrically and signalto each other. A seizure occurs when there is asudden and brief excess surge of electrical activityin the brain between nerve cells. This can causeabnormal movements, change in behavior, or lossof consciousness.Seizures are not a mental health disorder. Instead,epilepsy is a neurological condition that is stillnot completely understood.Having a single seizure does not mean that achild has epilepsy. A child has epilepsy whenhe or she has two or more seizures without aclear cause such as fever, head injury, drug use,or alcohol use.1 About three million Americanshave epilepsy. Of the 200,000 new cases thatdevelop each year, up to 50% are children andadolescents. About 300,000 children under theage of 14 in the United States have this condition.It develops in children of all ages and can affectthem in different ways.2GENERALIZED SEIZURESThis type of seizure involves the whole brainand is the most common type of epilepsy. Ina generalized seizure, the abnormal electricalactivity affects the entire brain. These seizuresproduce muscle twitches, convulsions, and loss ofconsciousness. People with this type of epilepsydo not remember having a seizure.PARTIAL SEIZURESThis type of seizure involves only part of thebrain. Sometimes a partial seizure can spreadto involve the whole brain, which is known as apartial seizure that secondarily generalizes.What are the differentkinds of epilepsy/seizuredisorders?There are many kinds of epilepsy and seizures.They each cause different behaviors and theyeach need different treatments. Identifying thetype (or types) will help your child’s doctorsuggest treatment options.3* Some people use the term “seizure disorder” instead of “epilepsy” to describe this condition. In fact, bothterms mean the same thing—an underlying tendency to experience seizures.3
EPILEPSY AND SEIZURE DISORDER: A RESOURCE GUIDE FOR PARENTSThe following chart 4 contains more information about the different types of generalized and partial seizures.Also see page 19 for information about first aid and safety specific to seizure type.GENERALIZEDSEIZURE TYPEPARTIAL4DESCRIPTIONTonic-clonic or Grand Mal(loss of consciousness)This is the most common and recognized generalized seizure. The personbecomes stiff and falls to the ground. Teeth clench and the arms, and usuallythe legs, begin to jerk rapidly and rhythmically. The seizure usually lasts nomore than a few minutes, after which the jerking slows and stops.Absence or Petit mal(loss of consciousness)During an absence seizure it might seem like the person is daydreaming.However, in an absence seizure the person cannot be alerted or woken up.They are unconscious for a moment and totally unaware of what is happeningaround them. These seizures usually last a few seconds.Myoclonic or Jerks(no loss of consciousness)Myoclonic means a jerking or twitching of a muscle. During this seizure briefshock-like jerks of a muscle or group of muscles occur. These usually involvethe neck, shoulders, and upper arms. Myoclonic jerks occur most frequently inthe morning and often occur in clusters. Although the seizures are brief, theycan be extremely frustrating, resulting in spilt drinks or similar incidents.Tonic and Atonic(loss of consciousness)Tonic seizures result in all muscles contracting. The body stiffens and theperson will fall over if unsupported.Status Epilepticus(loss of consciousness)This event is characterized by frequent, long-lasting seizures without regainingconsciousness between the start and end of seizures.Simple(no loss of consciousness)In these types of seizures, even though a person’s consciousness is not impaired,it does not mean that the person experiencing this type of seizure is able to stopor control the seizure. Simple partial seizures can be different depending onwhere in the brain the epileptic activity is occurring. Examples of symptomsare the movement of a limb, tingling, experiencing a smell or taste, and goingpale or sweating.Complex(impaired consciousness)Because a person’s consciousness is impaired in this type of seizure, the personwill not remember the seizure or their memory of it will be distorted. Othersmay believe the person is fully aware of what they are doing, but they are not.Usually the person loses awareness and stares blankly. Most people move theirmouth, pick at the air or their clothing, or repeat other purposeless actions.These movements are called “automatisms”. They usually last between 30seconds and 2 minutes.Atonic seizures, in a way, are the opposite of tonic seizures. Instead of the bodygoing stiff, all muscle tone is lost and the person simply drops to the ground.Although the person falls heavily, they are usually able to get up again rightaway. When the body goes limp, it inevitably falls forward causing potentialhead injuries.
EPILEPSY AND SEIZURE DISORDER: A RESOURCE GUIDE FOR PARENTSHow is epilepsy/seizure disorder diagnosed?Your doctor will ask a lot of questions when trying to diagnose epilepsy and determine the type(s) of seizuresyour child is having. The diagnosis is based on several exams and tests in addition to an interview aboutyour child’s condition.The facts you provide the doctor are very important in diagnosing your child’s epilepsy and deciding ontreatment. The following chart5 outlines some of the tools a doctor uses for diagnosis.TOOLS FOR DIAGNOSISInformation aboutseizure(s)INTERVIEWThe doctor will ask for a completedescription of what happened.PHYSICALEXAMMedical historyYou may be asked about:family history of seizuresmedical conditions or medicationsgeneral medical history of your childAn examination of muscle strength, reflexes, eyesight, hearing, and ability to detect various sensations aretested to better understand the cause of the seizures.EEG(Electroencephalogram)NEUROLOGICAL EXAM (TESTS)Questions that may be asked:What circumstances surrounded the seizure?What seemed to bring on the seizure?What happened before the seizure?How did your child feel before, during, and after the seizure?Description of seizure behavior.What happened after the seizure?Where was the child when the seizure occurred?CT or CAT scan(Computerized AxialTomography)An EEG measures the electrical impulses in the brain. During an EEG,electrodes (small metal disks) are attached to specific locations on thehead and monitored. Abnormal electrical spikes indicate seizure activity.A CT scan is an X-ray of the brain that creates three-dimensional imagesof the brain and shows possible abnormalities.MRIAn MRI is another imaging method using magnets instead of X-rays.MRI tests provide detailed images of the brain. CT or MRI scans maybe used to search for any growths, scars, or other physical conditions inthe brain that may be causing the seizures.Blood testsTests to measure white blood cell count, blood sugar, sodium, calciumand electrolyte levels, and liver and kidney function. Blood tests alsohelp rule out other illnesses.Other testsOther tests may be ordered as needed.(Magnetic ResonanceImaging)5
6EPILEPSY AND SEIZURE DISORDER: A RESOURCE GUIDE FOR PARENTSWhat causes epilepsy/seizure disorder?Many parents wonder if they have somehowcaused their child’s epilepsy. They search for away to understand why this is happening to theirchild. But, it is unlikely a parent or anyone didanything to cause the epilepsy.Finding the cause of epilepsy is difficult. Forseven out of ten children with epilepsy, thereis no known cause. These children are said tohave idiopathic epilepsy. “Idiopathic” means “ofunknown cause.”However, there are many known causes.Understanding and identifying the causes help todiagnose the type(s) of epilepsy. Possible causesinclude the following 6:problems with brain developmentbefore birthlack of oxygen during or following birtha serious head injury that leaves ascar in the brainunusual structures in the braintumorsa prolonged seizure with feverthe after-effects of severe braininfections, such as meningitisor encephalitisgenetic factors 6What might triggera seizure?Some people report very specific triggers orimmediate causes that can bring about a seizure.Children with epilepsy are more likely to havea seizure (have a lower seizure threshold) whenthey have a cold, the flu, or other commonillnesses. Some common seizure triggers includethe following:forgetting to take your medicinenot enough sleepfood allergiesstressflashing lights(e.g., from video games, strobe lights)alcoholillicit drugsdehydrationpoor dietinactivityWhat are thetreatment options?Childhood epilepsy is usually treated withmedications that prevent seizures. If themedications do not work or if the child hastoo many side effects, there are other treatmentoptions. These include surgery, the ketogenicdiet, or vagus nerve stimulation (VNS). Othertreatment therapies are being tested, but have notyet been FDA approved.MEDICATIONChildren often take the same antiepilepticmedications as adults. Medication may be in theform of tablets, sprinkles, capsules or syrup.
EPILEPSY AND SEIZURE DISORDER: A RESOURCE GUIDE FOR PARENTSThese medications are designed to preventseizures. Some are successful with a few seizuretypes; others have a broader range of action.Whenever possible, doctors try to control seizureswith one medication. Some children, however,may need to take more than one.Children may respond so well to medicationthat no further seizures occur as long as themedication is taken regularly as directed by thedoctor. Not having seizures does not mean thatthe medication is no longer needed. Always askthe doctor before stopping a seizure medication.Doing so without medical supervision may resultin a seizure or another type of reaction.Recently, there have been concerns regardingdifferences between brand and genericmedications, and different manufacturers of thesame generic medicine. For more informationabout these concerns, medications, andmedication side effects, contact your doctor orthe Epilepsy Foundation at (800) 332-1000.KETOGENIC DIETIf medications do not control a child’s seizures,a doctor may recommend a special high fat, lowcarbohydrate diet called a ketogenic diet.Carbohydrates are strictly limited and parentshave to be very careful that the child does noteat foods that are not on the diet or have notbeen pre-measured and pre-weighed.The diet requires a team effort—the family, thephysician, the dietitian, the nurse, and, if thechild is old enough, the child himself or herselfall working together to make sure the diet isfollowed and any side effects are monitored.WARNINGThe ketogenic diet is not a do-it-yourself diet.It must be monitored by a medical team.7MEDICATION TIPS:Make sure you understand the dosages ofmedicine prescribed by your doctor, such as thenumber of pills or teaspoons required for eachdose, as well as the number of doses and times(e.g., morning, noon, night) to administer eachdose. Also, make sure that you understand thebest method for administering each medication(e.g., by dropper, mixed with food or liquid, orcrushed).Ask your doctor or pharmacist about possibleside effects associated with each medication yourchild is taking and what you should do if theyoccur.Keep follow-up appointments. Some medicationsrequire periodic blood tests that are important toyour child’s health. Ask the doctor at the end ofeach visit when he or she wants to see you bothagain, and schedule the next appointment.Don’t change the dose or stop giving seizuremedication on your own without first talkingwith your child’s doctor.Ask for refills from your pharmacy several daysbefore the medication is due to run out.Ask your doctor or pharmacist about over-thecounter medications as they may interfere withthe epilepsy medication your child is taking.Also, check with the pharmacist when fillingother prescriptions for your child.Ask your doctor how to handle fever associatedwith childhood illness. Ask, too, about thebest way to give medication when a child hasa stomach virus and cannot keep medicationdown.Find out what you should do if your child missesa dose. Ask whether the dosing schedule isflexible and what to do if your child is scheduledfor a dose when he or she is sleeping.Do not allow yourself to run out of medicine.It is important that anticonvulsants be givensteadily. Ask for a new prescription at each visitand do not order refills of “old” prescriptions.
8EPILEPSY AND SEIZURE DISORDER: A RESOURCE GUIDE FOR PARENTSVAGUS NERVE STIMULATIONVagus nerve stimulation (VNS) is a type ofsurgical intervention that may be tried whenseizures cannot be controlled by other methods.The treatment works by sending regular smallbursts of electrical energy to the vagus nerve, alarge nerve in the neck that leads directly intothe brain.The energy comes from a small disk-like generator,about the size of a stop watch, implanted by asurgeon under the skin on the chest.The generator is connected to wires under theskin that are wrapped around the vagus nerve.SPECIALIZED CARESpecialized care for children with refractory(difficult to treat) epilepsy is available at specialcenters around the country. Many offer in-depthevaluations, surgery, the ketogenic diet, andVNS therapy. For information about sourcesof specialized care near you, call the NationalAssociation of Epilepsy Centers or any otherorganization listed on page 10.Health Care for My ChildAccess to Care/Access to ServicesWhat do I need to knowabout taking care ofmy child?The most important way to help your childand his or her physicians is to be an activemember of your child’s health team. This meanspreparing for visits, keeping records, learningto ask questions and advocating for your child.Networking with other parents of children withepilepsy may become a source of information,strength, and inspiration as you learn to livewith your child’s epilepsy. And most of all, donot forget to take care of yourself—without you,your child’s number one advocate is gone.MAKE OBSERVATIONSSeeing your child having what appears to bea seizure can be very frightening. However,remaining as calm as possible is important so youcan describe exactly what happened to the doctor.The likeliness your doctor will ever see your childhave a seizure is small. Your observations andknowledge of your child are vital in helping thedoctor reach a diagnosis. Writing down these andall observations about the seizure or subsequentbehavior is a good idea so you can tell your doctorexactly what happened.Two examples of forms to help you track thisinformation are included in the Appendixsection of this guide (Seizure Log [F1] and SeizureDescription Sheet [F2]). If possible, try to record avideo of your child during a seizure so that yourchild’s doctor can observe exactly what happensand what steps you take in response. Make surethat you or someone else is still tending to yourchild and the seizure during the taping, keepingyour child’s health and safety a priority at alltimesEDUCATE YOURSELF—ASK QUESTIONSFeeling overwhelmed and confused is perfectlynormal when first learning about epilepsy. Butif you ask lots of questions and gather as muchinformation as you can, you are choosing themost effective way to help your child. Learningas much as you can about epilepsy will build
EPILEPSY AND SEIZURE DISORDER: A RESOURCE GUIDE FOR PARENTSyour self-confidence and improve your ability torespond to your child’s needs. In this guide youwill encounter many Internet resources, as well asphysical addresses and phone contact information.If you do not have a
epilepsy is a neurological condition that is still not completely understood. Having a single seizure does not mean that a child has epilepsy. A child has epilepsy when he or she has two or more seizures without a clear cause such as fever, head injury, drug use, or alcohol use.1 About three million Americans have epilepsy.
photosensitive epilepsy only Natural light patterns/sunlight – photosensitive epilepsy only Epilepsy at a glance: what you need to know! Epilepsy is one of the most common serious neurological conditions. People with epilepsy tend to have repeated seizures. Up to 70% of children with epilepsy will either grow out of their epilepsy
people with epilepsy are also served by local Epilepsy Foundation affiliates across the country. If you have any questions about epilepsy and seizure disorders, living with epilepsy, or helping a friend or family member who has epilepsy, please visit us on the Web at www.EpilepsyFoundation.org or call 800-332-1000. Our Web site has information .
epilepsy and women’s health, says one of the biggest misconceptions about epilepsy is that women with epilepsy cannot or should not have children. “Epilepsy should not be the vast majority [of women with epilepsy] have healthy pregnancies and healthy babies”. Studies show that over 90% of women with epilepsy will give birth to normal, healthy
Epilepsy: A Guide for Teachers - 3 Epilepsy is a condition that is more common than most people realize. In the general population, approximately one person in a hundred has epilepsy meaning that approximately one in every one hundred students has epilepsy. In Canada, there are over 330,000 people with epilepsy. People of all ages have epilepsy .
Director, NYU Comprehensive Epilepsy Center New York University Robert Fisher, MD, PhD Maslah Saul MD Professor Director, Stanford Epilepsy Center Stanford University . Dr. Alfonsina Q Davies Endowed Chair in Honor of Paul Crandall for Epilepsy Research Director, Epilepsy Surgery, Pediatric Epilepsy Program .
Epilepsy prioritizes highly innovative, risky, paradigm-shifting projects that address CURE Epilepsy’s mission to cure epilepsy, affirming our core belief that the only acceptable final goal is “no seizures, no side-effects.” CURE Epilepsy: Our mission is to cure epilepsy, by promoting and funding patient-focused research.
LARAMIE PROJECT: 10 YEARS LATER: AN EPILOGUE. THE LARAMIE PROJECT: 10 YEARS LATER: AN EPI-LOGUE is a compel-ling follow-up to the highly acclaimed and widely produced play by the Tectonic Theater Project, "The Laramie Project," which chron-icled the aftermath of the Matthew Shepard murder in Laramie. Written by Tectonic Theater Project mem-
23. Sharma, P. D. [1991] : The Fungi (Rastogi & Co. Meerut) 24. Vasishta, B. R. [1990] : Fungi (S. Chand & Co. New Delhi) 25. Sharma, O. P. : Fungi (TMH)
