SEIZURE PACKET
What is a seizure?
The brain sends electrical signals to all parts of the body. Each signal follows a special pathway.
A seizure happens when the signals mix up.
When signals get mixed up they:
Do not meet or go to the right place in the brain.
Give off a sudden burst of electricity wherever they stop.
This sudden burst of electricity may stay in one area of the brain. It can also
spread to the brain’s different parts. A sudden burst of electricity makes
your child’s body do things that they cannot control. We call this a seizure.
Signs of seizures include:
Uncontrollable shaking, twitching, or jerking
Changes in the way your child acts
Changes in how awake your child feels
Brief staring spells
Changes in breathing and heart rate
Loss of bowel or bladder control
What is epilepsy?
Epilepsy means your child had two or more seizures. Some people may have seizures because:
The brain has not developed normally.
They had seizures as a baby.
They have family history of seizures.
Most children with epilepsy have normal brains. Seizures happen without
any known cause. Many times we never know why the brain signals get mixed up.
Some seizures:
Are very quick and hard to spot
Cause twitching, jerking, or stiffness of any or all parts of the body
Cause your child to pass out
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Helping Your Child’s Doctor
There are many different kinds of seizures. Different seizures need different medicines. Your
child’s doctor needs to know what kind of seizure your child has before choosing the right medicine.
Sometimes it can be very difficult to tell seizures apart. Doctors use information from medical tests
to help identify the seizure, but many times you can give us the best information.
The better you can describe the seizure, the easier and quicker your doctor
can start controlling it. Your child may have more than one type of seizure.
If you see more than one kind, be sure to describe each one separately and
record the type you think it is.
Telling us all about the seizure is very important.
Stay Calm
These are the things to look for before, during and after the seizure.
Before Seizure Starts
My Notes:
What was my child doing before the seizure?
What is my child doing at the time of seizure?
(awake or asleep, playing a video game, etc)
Did my child just wake up?
Did seizure start before or after a nap?
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Seizure Starting
My Notes:
Why did I notice the seizure?
(child cried, fell down, started staring, etc.)
What is the exact time?
Where is the seizure happening in the body?
(arm, leg, all over)
During Seizure
My Notes:
Is there jerking, twitching:
Which side (left, right, both)
Where (arm, leg, both)
Did the body get stiff?
Did the eyes flutter or roll?
Are there breathing changes?
(breathing faster, slower, grunting, etc.)
Does the skin look different?
(flushed, pale, clammy, blue, splotchy)
Is your child talking or making different sounds?
Is your child moving around or doing different
things
(reaching up, picking at clothing or air)
Are the: Eyes looking to one side … (what side)
Is the: Head turned to one side …(what side)
Does your child report seeing different things
or feeling different sensations?
(prickly, itchy, etc)
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During Seizure
My Notes:
Are your child’s pants wet or did you notice a
bowel movement?
Did your child bite the tongue?
Does your child vomit or get nauseated?
After Seizure
My Notes:
Is your child sleepy or confused?
Does your child understand what you are saying?
Can your child answer your questions or talk to
you?
Is your child weaker on one side of the body?
(what side)
Numbers to call if I have questions or need help:
My Notes or Questions:
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General & Focal
Seizures
General Seizures: 6 types
1. Generalized Tonic-Clonic (was called “Grand Mal” seizure)
Your child may:
Suddenly cry, fall, or get stiff, and have muscle jerks
Have trouble breathing
Stop breathing and turn blue … normal breathing usually starts when seizure over
Lose consciousness
Wet their pants or have a bowel movement
Become confused or sleepy after their seizure
2. Absence (was called “Petit Mal” seizure)
Your child may:
Have a blank stare that suddenly starts and stops … this lasts only a few seconds.
Blink really fast.
Have some chewing movements of the mouth.
Not know what is happening …quickly return to normal when seizure stops.
3. Atonic/Drop
Your child may:
Suddenly fall.
Soon return to normal and can stand or walk.
4. Myoclonic
Your child may:
Have sudden jerks. This can happen in one part of your body or all over.
Spill or drop things or fall
Have these seizures soon after waking up.
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5. Infantile spasms (starts between 3 months and 2 years)
Your baby may have several quick, sudden movements. We call these movements “clusters”.
If baby sitting up:
Head falls forward
Arms bend forward or extend backwards
Bends forward from the waist
If baby lying down:
Knees draw up
Arms and head bend forward. It looks like the baby is reaching for something.
Neck, arms and legs stretch out and get stiff
6. Tonic
Full body stiffening.
Usually lasts less than 30 seconds, but may last longer.
Focal Seizures
Focal seizures may happen different ways.
Your child may:
Remain awake and alert
Have jerking that starts in the one arm, leg or face.
Have jerking that moves from one area of the body to another.
Other children may:
Have seizures lasting a few minutes, but after the seizure, confusion can last longer. They may have no
memory of what happened during seizure period.
Have blank stare, followed by chewing.
Get confused or dazed.
Mumble
Cannot answer questions or recognize people
Act clumsy
Pick at clothing, pick up objects, try to take clothes off.
Run or appear afraid
Struggle or fight if held.
Focal Seizures with secondary generalization
Usually starts the same as above
Followed by whole body shaking similar to a generalized tonic-clonic seizure.
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Seizure First Aid
The brain sends out signals to all parts of our body. A seizure happens because the
signals are not working right. Some seizures are easy to see. The person may fall down
and start shaking all over. Some seizures look different. The person may begin:
Staring
Chewing, Smacking their lips
Picking at an object
Moving a body part over and over
Having a seizure may seem scary. Knowing what to do helps you
stay calm. Following these steps helps keep the person safe.
Move hard or sharp objects away from area.
Protect Child
If child is on the ground, place something soft under the
head. A pillow, towel, or rolled up jacket works well.
Some people may start walking during a seizure. Gently stop
them from going out a door or to the street.
Do not hold the person down.
Nothing in Mouth
Time Seizure
Do not try to force anything into the mouth.
It is impossible to swallow the tongue when having a
seizure.
Look at a clock or watch as soon as you see the seizure.
Most seizures stop within 5 minutes.
If seizure lasts longer than 5 minutes, or if several
seizures happen in a row, call 911.
If Unconscious Turn
to Side
Check Breathing
If child passes out, turn to one side
This prevents choking if vomiting or drooling happens and
helps your child to breathe easier.
During seizures, a person may briefly stop breathing &
turn blue.
Most of the times, we do not need to do CPR.
Breathing and color will get better after the seizure.
When the seizure stops, if there is no breathing or no pulse,
call 911 and start CPR.
Rest after seizure
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After the seizure is over, let the person rest
Stay with the child and offer comfort.
If in a public place, offer to phone a taxi, friend, or relative to
take the person home.
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Seizure Medicine
What to know about seizure medicines
Seizure Medications:
Do not cure epilepsy
Medicines only stop or lessen seizures.
Different types of medicines work on different types of seizures.
Sometimes one seizure medicine works well.
Sometimes your child will need several different medicines.
Sometimes doses of medicines need to be changed as your child grows.
Only work when you follow directions
DO NOT stop seizure medications without talking to your child’s doctor first.
Seizures can start if the medication is stopped too fast.
Come in tablets, sprinkles, capsules or syrup
Shake liquids well.
Medicines can upset your child’s stomach. Take with food.
Do not swallow chewable tablets without chewing first.
May cause drowsiness
Do not drink alcohol or take illegal drugs.
Do not take any sleeping medicine.
Always tell your child’s doctor before they take any new medicine … this includes:
Vitamins
Cold and fever medicines
Herbs
Medicines you can buy without prescriptions
My Seizure Medicines:
Tell your child’s doctor before your child stops taking any
medicine or if you are thinking about stopping the medicine.
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Generic Substitution
Most medicines have 2 names:
1. Brand Name: The drug company gives a special brand name to each
medicine they develop. Usually brand names are short and easy to remember.
2. Chemical Name (generic name): This name has to do with the chemicals that
make the medicine work. Many chemical names are long and hard to remember.
Naming New Medicines
A drug company makes a new medicine. They give this medicine a Brand Name. At first, this is the only
company that can make and sell the new medicine.
At some point, other drug companies can make this medicine. They cannot use the brand name, so they call
the drug by its chemical name. This is called the generic medicine. (example: Tylenol … brand name.
Acetaminophen … generic name)
Generic medicines
May look different
Are usually cheaper
Sometimes pharmacies will substitute generic medicines
Risks of Generic Seizure Medicines
Generic seizure medicines have the same chemicals as the original medicine, but the chemicals are arranged
different. This small change can mean the difference between having a seizure or not having a seizure.
Generic substitutions may not provide as constant dosage as a brand name medicine.
Always talk to your doctor first before you change
from a brand name seizure medicine to a generic medicine.
My generic meds:
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Blood Levels
This is the amount of seizure medicine in your child’s blood. To stop or lessen a seizure,
your child needs two things:
1. The right seizure medicine
2. The right level of this seizure medicine in your blood
It may take several days or weeks for a medicine to reach the right blood level.
Your child’s doctor decides the dose of medicine your child needs to take and how often to take it. If your
child stops taking the seizure medicine, or take it at different times, their blood level can become too low to
control the seizure.
It is very important for your child to keep taking their medicine, even if they have not had a
seizure for a long time. Not having a seizure means the medicine is working. It does NOT
mean your child no longer needs it.
Starting out slow
Doctors usually start medicine slowly and increase the dose on a daily or weekly basis. We try to keep the
dose as low as possible to lessen side effects, but still control the seizures. If your child continues to have
seizures, it does not mean the medicine is not working. We may need to change the amount, times, or type
of your child’s medicine.
Sometimes after a long period of control with medicine, a child may start having seizures again. This usually
does not mean that the epilepsy is getting worse. The dose of a medicine depends partly on your child’s
weight. As your child grows, the same medicine may need adjusting.
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Common Side Effects of Seizure Medicines
All seizure medicines have possible side effects. Please tell your child’s doctor if they have
any of the following:
Feelings, Alertness, Emotions
Sleepiness – usually goes away after 2-3 weeks on medicine
Loss of energy
Changes in ability to concentrate or focus on things
Mood changes
Difficulty sleeping
Head & Throat
Swollen or tender gums
Sore throat and/or ulcers in mouth
Headache that doesn’t go away
Swollen glands in neck
Yellowish color noted on eyes
Stomach
Severe nausea and vomiting
Appetite changes
Color change noted in urine or stool (usually dark color)
General
Yellowish color noted on skin
Joint pain
Unexplained fever or chills
Unusual bleeding or bruising
Symptoms of infection (fever, cough, etc)
There may be an increase in feelings of sadness, call your doctor immediately
Teens or Young Adults
Tell your doctor if you are sexually active.
If your child has a skin rash or allergic reaction… call your doctor immediately.
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Common Seizure Medicines
Brand Name
Generic Name
Banzel®
Rufinamide
Depakote®
Valproic Acid
Dilantin®
Phenytoin
Felbatol ®
Felbamate
Keppra®
Levetiracetam
Lamictal®
Lamotrigine
Lyrica®
Pregabalin
Mysoline®
Primidone
Neurontin®
Gabapentin
Phenobarbital®
Luminal Sodium
Sabril®
Vigabatrin
Tegretol® /Carbatrol®
Carbamazapine
Topamax®
Topiramate
Trileptal®
Oxcarbazepine
Vimpat ®
Lacosamide
Zarontin®
Ethosuximide
Zonegran®
Zonisamide
Rescue Seizure Medicines
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Brand Name
Generic
Ativan®
Lorazepam
Diastat®
Diazepam
Klonopin®
Clonazepam
Valium®
Diazepam
Versed Nasal Spray®
Midazolam
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Common Seizure Medicines
Banzel®
(Rufinamide)
For treatment of generalized seizures associated with Lennox/Gastaut syndrome.
Your child can take this with other medicines. It comes as a tablet.
Possible side effects: Banzel
Feeling light headed, dizzy,
or sleepy
Blurred vision
Headache
Stomach pain or nausea
(should take with food)
Rare side effects:
Changes in urination
Rash – call your child’s doctor
immediately
Fever – call your child’s doctor
immediately
Heart problems
Depakote® (Divalproex Sodium) …. Depakene® (Valproic Acid)
For the treatment of generalized tonic-clonic, myoclonic, atonic, focal, and absence seizures.
Your child can take it as a single medicine or with other medicines. It comes as coated tablets, sprinkle
capsule, or as a liquid called Depakene®.
Possible side effects:
Rare side effects: Depakote
Stomach pain or nausea –
(should take with meals)
Liver damage – Patients with pre-existing liver
disease should not take the medicine
At higher doses, you may have fine
tremors or shakiness of the hands
Rare cases of liver failure resulted in death
Increased appetite & weight gain
Decreased white blood count; decreased red blood
cell count or both
Increased hair loss or thinning; usually
stops after a few months and the hair
returns to the original thickness
Birth defects: Fetal malformation,
including 10% risk of neural tube
defects – spina bifida
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Easy to bleed
Pancreatitis
Decreased platelet count/easy bruising
Polycystic ovary disease
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Dilantin® (Phenytoin)
For generalized tonic-clonic, focal seizures, and focal seizures with secondarily generalized
seizures. Dilantin® may be taken with other medicines. It comes as capsules, chewable tablets,
or as a liquid.
Possible side effects:
Side effects due to too much Dilantin®
Cosmetic side effects such as thickening of
gums and increase in body hair are
common. Thickening of gums can be
reduced by good dental care with brushing
and flossing and dental visits.
Dizziness, Loss of balance when walking
Allergic skin rash – call your neurologist
immediately.
Dry mouth
Long term use can lead to loss in bone
density.
Decreased appetite
Nausea and vomiting
Headache
Constipation
Sleeplessness
Felbatol® (Felbamate)
For use with and without other seizure medicine for severe focal and generalized seizures. Felbatol®
comes in tablets and as a liquid.
Possible serious side effects: Felbatol
Blood cell count problems. It is important to report any signs of infection (fever, sore throat) or
bruising to your doctor right away.
Liver damage. Call us right away if you have dark urine, vomiting, or yellowing of the eyes and skin.
Keppra® (Levetiracetam)
Used in combination with other medicines for focal seizures and some generalized seizures. Keppra®
comes in tablets and as a liquid.
Possible side effects:
Headaches
Rare side effects
Hallucinations
Drowsiness
Dizziness
Behavior disturbance
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Lamictal® (Lamotrigine)
Mainly used for the control of focal seizures and some generalized seizures (generalized
tonic- clonic, absence, atonic, and myloclonic). Lamictal® comes in a chewable tablets or
regular tablets. They may have a line down the middle in order to break in half easily, if needed.
Possible side effects:
Headaches
Nausea and vomiting
Dizziness, sleepiness, awkward balance, double vision and blurred vision have been reported
when taking this medicine
Skin rash may occur when taking Lamictal and must be reported to the doctor
immediately. Severe allergic reactions including Stevens-Johnson Syndrome have
occurred. This is most common in children who are also taking Depakote.
Lyrica® (Pregabalin)
Mainly used with other medicines to control focal seizures. Lyrica® comes as a capsule
Possible side effects:
Headaches
Nausea and vomiting
Feeling light-headed, sleepy, or dizzy
Dry mouth
Feelings of sadness or happiness
Neurontin® (Gabapentin)
Mainly used for focal seizures, yet has helped with secondary or primary generalized seizures. It
comes in capsules of and also in liquid form.
Possible side effects:
Increased sleepiness
Droopy eyelids
Dizziness or uncoordination, double vision and slurred speech
Decreased or lack of appetite
Rash and allergic reactions
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Phenobarbital
Used for generalized and focal seizures primarily in infants and the very small child.
It comes as white tablets.
Possible side effects:
Hyperactive behavior often described as fussy, irritable, or stubborn. Most children get
used to this side effect within a month. Because of this side effect, it is not
recommended to use this medicine when children are trying to learn in a school setting.
Often another medicine is used for the school-aged child.
Always report any rash to your neurologist
Drowsiness
Sabril® (Vigabatrin)
Used for generalized and focal seizures, most commonly infantile spasms associated with tuberous
sclerosis. It comes as a tablet and as a liquid.
Possible side effects:
Feeling light-headed, sleepy, dizzy, or nervous
A medicine-related rash should always be reported.
Weight gain
Nausea or vomiting
Changes in vision, including blindness. Your doctor will schedule a regular eye exam
while on this medication.
Tegretol® /Carbatrol® (Carbamazapine)
Helpful for focal seizures. It may be used alone or in a combination with other medicines.
Tegretol® comes in a chewable tablet and in an orange flavored liquid. Tegretol XR® is an
extended release tablet that should not be chewed. Carbatrol® is an extended release sprinkle
capsule.
Possible side effects:
Drowsiness or sleepiness
Nausea, vomiting, and stomach cramps
Always report any rash to your
neurologist
Rare side effects:
Decreased white blood count, hemoglobin and
platelet may be seen
Rare, but not reversible aplastic anemia
Liver damage
Increased appetite
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Topamax® (Topiramate)
Used primarily to treat focal and generalized seizures. Topamax®
comes in a table and in sprinkles. The tablets may have a bitter taste if crushed or chewed. It is important
to drink plenty of water each day when taking this medicine, especially during the summer.
Possible side effects:
Sleepiness, drowsiness, dizziness, uncoordination may be felt
Some have complained of tingling
Watch for difficulty learning, problems in school, or problems with concentrating or
memory; and alert your doctor if they become a problem
Decreased appetite that can result in weight loss.
Decrease sweating, increased body temperature and flushing of the face have been
reported. Alert your doctor if this occurs.
In rare instances can cause glaucoma. Call for any eye redness, tearing, pain or
blurred vision.
Trileptal® (Oxcarbazepine)
Mainly used for the treatment of focal seizures in patients with epilepsy. It comes in tablets and as a
liquid.
Possible side effects:
Fatigue, headache, dizziness, abnormal walking, tremor
Diplopia (double vision), abnormal vision
Nausea, vomiting
Always report any rash to your neurologist
Vimpat® (Lacosamide)
Used with other medicines in the treatment of focal seizures in patients with epilepsy. It comes in
tablets and in as a liquid.
Possible side effects:
Dizziness, headaches
Diplopia (double vision), abnormal vision
Nausea, vomiting
Always report any rash to your neurologist
Behavior changes
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Zarontin®(Ethosuximide)
Used mainly for the treatment of absence seizures. It may be used with other
seizure medicines. Zarontin® comes in a gel cap and in a raspberry-flavored liquid.
We prefer using the brand name.
Possible side effects:
Nervousness, dizziness, headaches,
sleepiness, lack of energy, or irritability.
These may disappear with time.
Rare side effects:
Decreased white or red blood cell count
Stomach pain – should take with meals
Always report any rash to your
neurologist
Nausea, vomiting
Zonegran® (Zonisamide)
Used with other seizures medicines for the treatment of focal and generalized seizures. It comes in
capsules. It is important for your child to drink plenty of water each day when taking this medicine,
especially during the summer.
Possible side effects: Zonegran
Headache, dizziness, difficulties in
concentration or memory, mental
slowing, fatigue
Decreased appetite, kidney stones,
weight loss
Rare side effects:
Changes in speech or taste. Immediately alert
your child’s doctor if this occurs
Always report any rash to your
neurologist, especially if allergic to sulfa
drugs
Decreased sweating, flushing of the face
and increased body temperature have
been reported with this medicine. Alert
your child’s doctor if this occurs.
My Notes or Questions:
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Rescue Seizure Medicines
Prescribed Time: The prescribed time for giving a rescue seizure medicine is the time that
you give the medicine. For example, your child’s doctor may tell you to give a rescue seizure
medicine at 5 minutes. If your child is having a seizure and it is now 5 minutes later, you will give the
rescue medicine. Most children receive their rescue medicines between 3-5 minutes.
Ativan® (Lorazepam Intensol)
Mainly for generalized and focal seizures to stop seizure activity lasting longer than the prescribed time
or in “clusters”. Your child’s doctor will define cluster seizures for you. It comes as a tablet and in
liquid form. Give this medicine as ordered by your child’s doctor.
Possible side effects:
Drowsiness, confusion, dizziness
Low blood pressure
Change in appetite
Visual disturbances (see stars, odd colors)
Rash (rare)
Diastat® (Diazepam)
This rectal medicine is for both focal and generalized seizures. Give this medicine rectally if your
child has a seizure lasting more than the prescribed time or is having “cluster” seizures. Your doctor
will define cluster seizures for you. Diastat comes in a pack of 2 rectal suppositories. Follow the
packet instructions for administration or ask your doctor for details.
Possible side effects:
Drowsiness and sleepiness
Slowing of respirations
Uncoordination, difficulty walking
Diarrhea
rash
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Klonopin® (Clonazepam)
Klonopin® is mainly for generalized myoclonic, atonic, absence, atypical absence seizures and focal seizures. It
comes in an orally dissolving tablet. It may be used with other seizure medicines. It is also used for seizure
flurries/clusters.
Possible side effects:
Drowsiness and staggering while walking
Increased drooling
Behavior changes such as irritability, restlessness, hyperactivity, inattentiveness, and
sleep disturbances
Changes in appetite
Rash (rare)
Versed Nasal Spray® (Midazolam)
Versed nasal spray® is used to stop seizure activity. It comes as a spray that goes in the nose. Follow the
doctor’s instructions for giving this medicine.
Possible side effects:
Dizziness, sleepy, difficulty concentrating
Dry mouth
Change in balance
Trouble breathing – call 911
NOTE: This is general educational information. It reviews basic medicine information for seizures
and epilepsy. This medicine information does not cover all possible uses, actions, precautions, side
effects, or interactions of these medicines. Some of these medicines are not FDA approved to be
used in children. Some are not FDA approved for certain seizure types. Please call your doctor if
you have any questions or concerns about any of these medicines.
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Seizure Safety Precautions
Until your child’s seizures are controlled, the following activities can be dangerous.
For at least the first 6 months after your child is diagnosed with a seizure disorder,
we suggest they do not take part in:
Horseback riding
Scuba diving
Rock climbing
Water/snow skiing
Boxing
Football
Wrestling
Rugby
Operating motorized vehicles (go-carts, 4 wheelers, scooters, etc.)
It is important for all children diagnosed with a seizure disorder to follow these safety
precautions:
1.
2.
Have adult close by when taking a bath.
Have adult present when swimming in a pool or lake.
3.
Wear a life jacket when swimming in the lake.
4.
Do not climb trees.
5. Only climb to heights that are protected (wearing safety belt)
5.
6. Always wear a bicycle helmet when on a tricycle, bicycle, rollerblades.
7.
8.
Always wear a bicycle helmet when horseback riding.
The safest activities are one that keep your feet on the ground.
This list does not cover every possible sport or activity. Parents must always use their
best judgment for their child.
Safest activities for children with a seizure disorder are the ones that keep
both feet on the ground. Check with your doctor about these common activities
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