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What is epilepsy?


Epilepsy is a condition of the brain that makes children have recurring seizures. A seizure is caused by a sudden change in the brain's normal electrical activity (similar to the way the lights flickering in a house because power lines are shaken during a storm). The brain uses electricity, too, and can be interrupted briefly.

Seizures can look very different. Some children have just one type of seizure, others more than one type. Some ways a seizure can affect a child:
  • Causing a short time during which the child can't use one of the senses (ability to taste, feel, see, hear or smell).
  • Causing a child to go unconscious for a short time or just sit staring into space for a time.
  • Causing convulsions.
While seizures are a part of having epilepsy, having a single seizure doesn't mean a person has epilepsy. High fevers can trigger seizures that go away when a child's temperature goes down.

Epilepsy is not a mental disorder. Nor does epilepsy generally worsen with time. Sometimes epilepsy goes away after several years. Despite most often being a chronic condition, children can live normal lives with the help of anticonvulsant medications (anti-seizure drugs).

Epilepsy Foundation - http://www.efa.org/



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What are common signs of epilepsy?


Seizures are the main sign of epilepsy. A child with a seizure might:
  • Seem to be daydreaming or not paying attention.
  • Suddenly stop while talking or doing something and stare with a blank face, followed by rolling eyes and fluttering eyelids.
  • Suddenly go stiff (especially the arms and legs).
  • Make a crying sound.
  • Have increased saliva (drooling).
  • Shake a leg/arm or whole body repeatedly, with or without blacking out.
  • In extreme cases stop breathing.
After the seizure your child may have many different reactions:
  • May feel sleepy and confused, or upset.
  • Have a headache.
  • Feel sick to stomach (nausea) or throw up (vomit).
  • May slur speech or be hard to understand for a little while.
NIND, 2005



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What can I do to help my child?


You have made an important first step by reading about epilepsy. You also should talk with other parents of children with epilepsy. They have gone through what you are going through now and perhaps can help. You also can get help from parent support and advocacy groups such as Parent to Parent of Miami. Research tells us that the earlier we begin to help children, the better the results for the child and family.



Below are some checklists to do to help your child. Remember that you are not alone.

THINGS I CAN DO TO HELP MY CHILD WITH EPILEPSY

Getting Started

IN THE STATE OF FLORIDA:
 If my child has other delays, get him/her evaluated:

If your child is between ages birth to 3 years old, your child can be evaluated by a team of experts through the Early Steps program for free. Your child may be eligible for free services. Contact one of the centers closest to your home.



If your child is 3-5 years old and has problems with learning, speaking, playing, seeing, walking or hearing, he or she can still receive free screening through the Child Find/Florida Diagnostic and Learning Resources System (FDLRS/South) program. Testing also is provided for special education programs. (If your child is already in the Miami-Dade Public School system, your child must be tested through the school.)



Contact Children's Medical Services (CMS) http://www.cms-kids.com CMS provides local offices and will sometimes refer children to medical centers that work with CMS, providing different services to help care for children with disabilities, special needs or major medical conditions. These services can range from early intervention programs such as Early Steps to ones for a specific medical condition.



Get more information: Visit more websites. Read a book. Watch a video on epilepsy. Include your child and family. Talk with another parent. Parent to Parent of Miami  can help you meet other parents and get services.





 Work with my child's service providers: A service provider can be your doctors, nurses, teachers, social worker or any professional. Remember that you know more about your child than anyone else and are the main influence in your child's life. Some tips for speaking with service providers:
  • Feel free to ask questions and make comments. Be specific about what you know about your child and what you want and need for your child. Be honest about what you expect, any worries you may have, or about anything you don't understand.

  • If you think your child needs something in particular (such as a change in medication), keep asking until you get it or until you learn why it is not needed.
Your child may need a Section 504 educational plan to make sure your child's educational and health care needs are met. Section 504 is part of the Rehabilitation Act of 1973. This federal law allows qualified children with disability to have special services or supports in their schools. For more information on Section 504, see this website: http://www.hhs.gov/ocr/504.html.

Your child may be qualified for more services under IDEA. Check with your child's school.

 Talk with my child's teacher: Ask the teacher to talk to you often about how your child is doing at school. One way to stay in touch is to use a notebook that goes between home and school. You also can stay in touch through e mail or regular phone calls. Be sure the teacher knows about any changes in your child's condition that might affect schoolwork or learning.

If your child is having trouble with schoolwork, ask your child's teacher to:
  • Provide advance schedules or tools to help your child stay on track
  • Provide appropriate accommodations/modifications or changes to the curriculum. (Your child may be eligible for these through IDEA or Section 504.)
 Have my child wear a Medic Alert bracelet: Hence, in an emergency, vital information on your child's condition is available. Also make sure your child's school has all necessary medical information, including emergency contact information and an updated list of medications.

 Contact my local Epilepsy Foundation for an education specialist to train my child's school personnel on what to do if my child has a seizure:

Epilepsy Foundation South Florida, Inc.
7300 N. Kendall Drive/Suite 700
Miami, Fla. 33156-7840
(305) 670-4949/#211


 Include my child in all parts of daily life: Encourage your child to take part in family fun, recreation activities and play that can be done safely. Laughing, running, chattering are all fun and good.

What to do when a seizure occurs:


When your child starts to have a seizure:
  • Stay calm. Look at the time the seizure starts. You may need to know how long a seizure lasts.
  • Turn your child on her or his side to allow any saliva to drain out of the mouth.
  • Unbutton his or her shirt collar and put something soft under your child's head.
  • Move furniture to prevent your child from getting hurt.
  • Call 911 if the seizure lasts for more than five minutes, if this is the first seizure, or if your child has one seizure after another.
  • Give mouth-to-mouth resuscitation if seizure stops, but your child is not breathing. (This rarely occurs.)
Comfort your child after the seizure is over. It can be scary for your child and you. Allow your child to rest.

Fletcher-Janzen & Reynolds

What not to do when a seizure occurs:
  • Don't put anything in your child's mouth (especially your fingers). Seizures can make your child bite or swallow without control.
  • Don't restrain or hold down your child. That can cause stress and injury.
  • Don't give your child anything to drink. Wait until you are sure it is over. This prevents your child choking on the drink.

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What are some other ways to describe epilepsy?


One way to describe epilepsy is by the type of seizure your child may have. There are two kinds of seizures. Some people use older terms when talking about seizures, such as fits, spells or falling out.

Focal seizures or partial seizures occur because they happen in only one part of the brain. In a simple focal seizure your child will remain awake, but may have unusual feelings of joy, anger, sadness, or nausea. Some children may hear, smell, taste, see or feel things that are not real. In a complex focal seizure, the child will have a change in or loss of consciousness. He or she may blink, twitch, have jerky mouth movements or even walk in a circle.

Generalized Seizures may cause a child to lose consciousness, to fall, or to have hard muscle spasms. The generalized seizures include:
  • Absence or petit mal seizures: Cause a child to appear to be staring into space; also can cause jerking or twitching muscles.


  • Tonic seizures: Cause muscles in the back, legs and arms to get stiff.


  • Clonic seizures: Cause muscles on both sides of the body to jerk.


  • Myoclonic seizures: Cause jerks or twitches of the upper body, arms or leg.


  • Atonic Seizures: Cause a loss of normal muscle tone; sometimes called "drop seizures" because a child suddenly may drop his or her head or body.


  • Tonic-Clonic/Grand Mal: May bring a mixture of symptoms such as stiffening of the body, repeated jerks of the arms and/or legs, and loss of consciousness.

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What causes epilepsy?


In many cases the cause of epilepsy can't be found, but some known causes are:
  • Head injuries.
  • Brain tumors.
  • Lead poisoning.
  • The way the brain developed before a child was born.
  • Inherited condition from a mother or father.
  • Bad infections, especially meningitis.
  • Brain hemorrhages (bleeding in the brain), which may be caused by injury or surgery.
The Epilepsy Foundation 2005



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Do many children have epilepsy?


Epilepsy is among the most common conditions of the nervous system and affects people of all ages, races and ethnic backgrounds. Epilepsy and seizures affect 2.7 million Americans. About 315,000 children under the age of 14 have epilepsy. Perhaps 181,000 new cases of seizures and epilepsy happen each year. Ten percent of the American population will have at least one seizure in a lifetime.
The Epilepsy Foundation 2005W



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What does epilepsy mean for the health of my child?


Epilepsy may be treated with medicine, special diets or vitamins, vagus nerve stimulation (using a device to run a small charge of electricity through this nerve to help prevent seizures) or brain surgery. Medicine is the easiest and most common treatment. Usually doctors try medicine first, and sometimes the first medicine the doctor gives your child will not work. Be patient. The doctor might try another medication (or several) until the seizures are controlled. Many children with epilepsy live completely normal lives with treatment.

Epilepsy.com 2005



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What does epilepsy mean for my child’s intelligence and learning?


If your child is having trouble with his schoolwork, your child can receive special- education services free from your public school.

Many children with epilepsy need special-education services because:
  • Children with epilepsy often have problems remembering things.
  • Some children have learning disabilities in addition to epilepsy -- for example dyslexia (a problem with how the brain sees words and numbers that makes it hard to read and write).
  • Medications used to prevent seizures may cause trouble concentrating or with cognitive processing or with understanding.
  • Children with epilepsy may be absent from school often, missing learning time as well as time to complete homework.
Fletcher-Janzen & Reynolds



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Will my child be able to attend child care, preschool, a regular school or after-school programs?


All children have the right to a free and appropriate public education. For children with epilepsy, this means that your child will be able to attend school just like all other children. Some may need the supports found through special-education classes or hospital/homebound programs. But most children with epilepsy go to regular classes at their school and don't need special programs or classes.

Before your child is old enough for kindergarten there are programs designed to help your child's development. In every state and community there is an early intervention program. An early intervention program is designed for children from infancy to about age 3. In Miami-Dade County this program is called The Early Steps Program. This program helps you determine what your child may need and then helps you find and organize the services. It also will help you find and arrange your family's support, information and training needs.

Dial 911 for a list of community preschool or after-school programs.



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What else should I know about epilepsy?


Among the most important things you can do for your child with epilepsy is to keep track of your child's seizures and write down a log of the seizure activity, how often they happen and how severe they are. Take this to your doctor appointments.

Some seizure medications have side effects. These side effects differ with each medication. Some of these side effects include a "burning" smell, nausea (sick to stomach), and being unusually tired and unwilling to do normal things. Call your child's doctor if you see anything different and unusual. Your doctor may want to do blood tests to check for side effects and to make sure your child is taking medicines at the right dose or level.

All children want to be like other children. Many children with medical conditions experience frustration and may get upset when they are unable to "be" like other children. Counseling can help them deal with those emotions.


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Who are some professionals my child may need to see?


Your child may need to see many different health care specialists. For example:

Pediatrician: A doctor who specializes in treating children. The word "pediatric" in front of a professional's title means he or she works with children.

Pediatric neurologist: A doctor who specializes in treating conditions of the nervous system and the brain in children, such as epilepsy.

Pediatric psychologist: A doctor trained to evaluate and test children as well as do counseling.

Social worker and counselor: A professional who provides counseling and emotional support for the child and family, and may help coordinate services, too.

Care coordinator: An individual responsible for organizing the details across agency lines and serving as your contact to help you and your family get services and assistance.

Early childhood special educator/special-education teacher: A teacher trained to work with your child, focusing attention on your child's development and working with you to learn the techniques that benefit your child.


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What are some websites where I can read more about epilepsy?


The Epilepsy Foundation http://www.efa.org Information on research, advocacy and the condition.

Epilepsy.Com http://www.epilepsy.com Information about epilepsy and seizures, diagnosis, treatment and living with epilepsy.

NICHCY http://www.nichcy.org/pubs/factshe/fs6txt.htm Fact sheet and information about epilepsy from the National Dissemination Center for Children with Disabilities.

NIH MedlinePlus http://www.nlm.nih.gov/medlineplus/epilepsy.html A comprehensive source of links, this is a service of the U.S. National Library of Medicine and the National Institutes of Health.

Family Caregiving Network Fact Sheet on Epilepsy www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=572 Epilepsy fact sheet provided by the Family Caregiver Alliance.

Bandaids and Blackboard http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/sitemap.html A great site for children, teens and parents of children with medical challenges.

Early Steps www.cms-kids.com/EarlyStepsHome.htm Search Florida's Early Intervention Program home page for many parent resources.


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What are some books I can read on epilepsy?


For children:

Lee, the Rabbit With Epilepsy (Special Needs Collection) by Deborah M. Moss, Carol Schwartz (Illustrator). This book is very good to read to young children to explain epilepsy. The detailed, fun and colorful pictures engage the child's interest. (Preschool level)




Taking Seizure Disorders to School: A Story About Epilepsy by Kim Gosselin This children's book talks about the myths and fears surrounding epilepsy in a positive, upbeat and entertaining style and explains seizures in an understandable way. (Ages 4-8)



Books for a teacher

Takedown by E. M. J. Benjamin. Story of a high school wrestler diagnosed with epilepsy. The book highlights the condition, the sport and the relationships with his family. One educator said, "In teaching self-advocacy, this novel helped my students reflect on their own disability after seeing how the main character dealt with his disability and how others perceived it. It was easy to read and understand for my students with all different disabilities. I highly recommend this novel to other teachers." (Ages young adult/grades 9 and up)

Book for parents:

Seizures and Epilepsy in Childhood: A Guide by John M. Freeman, M.D. This important book helps parents become active partners in their child's care.






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