Information

for parents

and caregivers

✓ Quick Read Series

© 2003 Epilepsy Foundation of America, Inc.

This booklet gives you some basic information about epilepsy. It’s notmedical advice. Don’t change anything about your child’s treatment oractivities without first talking to a doctor.

WHAT ARE SEIZURES?

Seizures happen when there is asudden surge of electrical energy in achild’s brain.

They cause sudden changes in howa child acts, moves, or feels.

A seizure may affect just one ortwo things that the brain controls –like a shaking arm, or a strange feelingin the stomach.

Or it may sweep across the child’sbrain, knocking out awareness orcausing a massive muscle jerk.

Seizures end after a few seconds,or a couple of minutes. After theseizure, the child’s brain goes back toworking normally again.

WHY DO SEIZURES HAPPEN?

Many children have seizures,especially when they are young.

A seizure happens whensomething stresses a child’s brain.A very high fever can cause a seizurein infants or toddlers.

A bad infection that goes to thebrain can cause seizures in children ofany age.

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Seizures that happen with highfever usually go away when the childgets older.

WHAT IS EPILEPSY?

Epilepsy is a disorder of the brain.It also causes seizures.

Seizures caused by epilepsyhappen from time to time withoutfever or for no other special reason.

Epilepsy is also the name forseizures that happen because of aninjury or some other condition thatcan’t be changed.

About 1 in every 100 Americanchildren has epilepsy.

Some people prefer to callepilepsy a seizure disorder.

EPILEPSY & SEIZURES

Children with epilepsy may haveone or more kinds of seizures thatlook like:

• Blank staring spells that last onlya few seconds.

• Falling to the floor, getting stiffand shaking all over.

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• Suddenly feeling afraid, or angryfor no reason.

• Shaking or jerking of an arm,or leg.

• Picking at clothes, blacking out.

• Groups of jerking movementsin a baby.

Some people call them fits, spellsor falling out. The name most peopleuse is seizures.

A child cannot stop a seizure ormake one happen on purpose.

When you ask about it later, thechild probably won’t remember whathappened.

WHAT CAUSES EPILEPSY?

Most of the time, doctors don’tknow why a child has epilepsy. Somepossible causes are:

• A blow to the head that injuresthe brain, or

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• Use a baby monitor. It can helpyou know if a child has a seizurein his room.

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• A scar on the brain from an oldinjury, or

• A poison, like lead, or

• Something that happenedbefore the baby was born.

HOW IS EPILEPSY TREATED?

Children with epilepsy are usuallytreated with medicines. The medicinesare designed to prevent seizures.

Several kinds of medicines areused to treat epilepsy.

Your doctor will pick the one thatseems like the best choice for yourchild and the kind of seizures he orshe is having.

If the seizures keep happening, thedoctor will try a different kind ofmedicine.

This all takes time.

Some medicines may make yourchild very sleepy, not want to eat, feeldizzy, get a rash, or seem ill in someother way.

If this happens, call the doctor.Your doctor will give you advice aboutwhat to do. He may change how

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much medicine your child is taking, orhe may change the medicine.

Don’t stop or change it on your own.

Stopping the medicine or changingit on your own could make your childhave a seizure.

HELPING THE MEDICINE WORK

Here are some ways to help themedicines help your child:

• Give her the medicine at thesame times every day.

• Give her exactly the amount ofmedicine the doctor has said.

• If she’s old enough, let her helpyou count out the pills.

• Tell her why she’s taking thepills. Help her see that they’reto keep seizures away and tokeep her well.

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• Ask your doctor what to do ifyour child misses a dose of theepilepsy medicine.

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• If your child’s medicine is liquid,be sure to shake the bottle wellbefore you pour the dose. Thatway, your child will get the rightamount every time.

• Keep epilepsy medicines and allother medicines in a cool, dryplace, out of your child’s reach.

OTHER KINDS OFTREATMENT

Sometimes the meds don’t help.

Your child may have tried lots ofdifferent ones but still has lots ofseizures.

Or the medicines may make himso sleepy that he can’t learn or domuch of anything.

That’s the time to ask your doctorabout new medicines or other kindsof treatment. There are three otherways to treat seizures if the medsdon’t work.

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• If your child has seizures, don’tuse bunk beds. Having a seizurein a top bunk could cause thechild to fall.

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• Surgery• Special diet• An electrical implant

Surgery for epilepsy means havingan operation on the brain. Thedoctors remove a small part of thechild’s brain that’s causing the seizures.

Many tests have to be done beforethe doctors can say if they think anoperation would help.

A special diet, called the ketogenicdiet, helps some children. It uses foodas if it is medicine.

There’s a lot of fat in the diet. Allthe child’s food has to be weighed forevery meal. It has to be followedexactly or it doesn’t work.

Another kind of treatment sendselectrical signals to the brain from alittle battery. Doctors place thebattery under the skin near the child’scollar-bone. It’s done during same daysurgery at the local hospital.

This kind of treatment is called VNS(vagus nerve stimulation) therapy.

• Check out the Parents Helping Parentssection of the Foundation’s website.

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DEALING WITH SEIZURES

If your child has seizures that makehim fall, get stiff and shake, make surethat everyone in your family knowswhat to do.

Here’s what they should know:

• Keep calm.

• Check the time as the seizurestarts. Keep track of how long it lasts.

• Put something flat and softunder his head.This way itwon’t bang on the floor whenhis body shakes.

• Turn him gently on his side sohe won’t choke.

• Don’t put anything in his mouth.He won’t swallow his tongue.

• Don’t try to hold him down orstop him from shaking.

Most children don’t have to go tothe hospital every time they have a

• Spend special time with yourother children. They may feel leftout and lonely.

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seizure. Most seizures end on theirown after a couple of minutes.

Still, every child is different. Someseizures last longer. Ask your doctorabout what you should do.

WHEN TO CALL 911

You and anyone looking after yourchild should always call 911 when:

• The seizure looks different fromthe kind your child usually has.

• It lasts longer than five minutes.

• Another seizure happens rightafter the first one.

• Your child isn’t breathingproperly or doesn’t wake upafter the shaking has stopped.

• Your child had a seizure in the water.

Some children often have seizuresthat happen one after another.

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• Get to know other parents whohave a child with epilepsy. Callyour local Epilepsy Foundation or seizure clinic.

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Some children often have seizuresthat go on for more than five minutes.

If your child has seizures like these,check with your doctor.

Your doctor may tell you how to treat those seizures at home, soyou don’t have to go to the hospitalevery time.

WHAT PARENTS ASK

The Epilepsy Foundation gets a lotof questions from parents of childrenwith epilepsy. Here are a few of them:

My daughter hasn’t had aseizure in months.Whydoes she still have to takethe medicine?

Because it’s working. Themedicine is doing its job of keepingthe seizures away. If she stops takingit, she’s likely to have seizures again.Check with your doctor. If she staysseizure free, she may be able to go offthe medicine at some point.

But don’t try stopping it on your own.

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Every time my child has aseizure, I’m afraid he won’twake up. Do children everdie from seizures?

It hardly ever happens. But itcan.The best way to keep your childsafe is to make sure he always takesthe medicine on time.

Will my child always haveepilepsy?

That’s hard to know. Somechildren stop having seizures as theyget older.

Children who don’t have anyseizures for a year or two whilethey’re taking epilepsy medicine havethe best chance of growing out it.But every child is different.

How can I help my child at school?

Meet with his teacher and theschool nurse. Tell them about yourchild’s seizures.

Tell them what his seizures looklike. Tell them what you want them todo if he has one at school.

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My son often doesn’tremember what he’s told,or what he’s beenstudying. Is that becauseof the epilepsy?

It could be. Some children withepilepsy find it hard to remember things.Some have trouble paying attention.

Sometimes, having a seizure canwipe out a child’s memories of whathappened before it began. Somemedicines may make it harder toremember things, too.

If this is happening to your child,check with your doctor and checkwith the school. See if special help isavailable.

How active should mychild be? Will runningaround make her havemore seizures?

Most children don’t have seizuresbecause of being active. Most dobetter if they can do the same thingsother kids do.

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• Take some time for yourself.TIP FOR PARENTS

TO FIND OUT MORE

Call the Epilepsy Foundation toll-free 1-800-332-1000, with any questions you may have, or visit our website atwww.epilepsyfoundation.org or write:

Epilepsy Foundation4351 Garden City DriveLandover, MD 20785

Your local Epilepsy Foundation can help you get in touch with peoplein your town or city who can alsohelp you.

• If your child has drop seizures, ahelmet and face guard may keepher from being hurt.

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1-800-332-1000

www.epilepsyfoundation.org

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