your guide to managing epilepsy/seizures

Just as a flight plan guides a pilot’s path to their destination, this plan outlines the path to preparing to care for your child with seizures. Following the path below, you and your care team will work together to make sure you feel prepared to care for your child in the event of a seizure. Please ask anyone on your care team if you have any questions.

when to call the neurology office 

• Any questions or concerns regarding increased or different seizure activity outside of baseline, and/or seizure medication management.
• If you videotape your child’s seizures and send it to the neurology email address (neurotriagenurses@ childrensdayton.org) or uploaded it through MyKidsChart, call the office and confirm the video was received.
  • Sending video other than by encrypted manner is not secure and by sending the video through the internet you acknowledge and agree that you bear any and all responsibility for and waive any and all claims or liability against the hospital for any unintended access or distribution of the video to others through the internet. By emailing us the video of your child, you are consenting to share that private health information with us to provide medical care. Your child must be fully clothed in the video. Only your child who is the subject of the video and possibly you as the sender should be pictured in the video. Additionally, the video images must not contain any inappropriate images or content. Once received, the video and your child’s personal health information will be uploaded to the patient chart and protected according to our privacy policies.
• If seizure medication refills are needed.
• If school medication forms and/or seizure action plans are needed.

Seizures are almost never life-threatening. Many last only a few minutes and stop on their own. Still, it can be alarming to see a child having a seizure, and it helps to know what to do.

signs and symptoms

Seizures can take many forms, from staring spells to involuntary movements of the arms and legs. Some signs a child might be having a seizure are:

• Unusual sensations or twitching before the seizure
• Staring, not responding to anyone
• Uncontrollable muscle spasms
• Loss of consciousness (passes out)
• Uncontrolled peeing or pooping

what to do if your child has a seizure

If someone is nearby, ask them to call your child’s doctor. If no one is with you, follow the steps below and then call the doctor:

1. Gently place your child on the floor or ground, and remove any nearby objects.
2. Lay your child on his or her side to prevent choking on saliva (spit).
3. Loosen any clothing around the head or neck.
4. Make sure your child is breathing OK.
5. Don’t try to prevent your child from shaking — this will not stop the seizure and may make your child more uncomfortable.
6. Don’t put anything in your child’s mouth. Your child will not swallow his or her tongue, and forcing teeth apart could cause injuries or block the airway.
7. Don’t give your child anything to eat or drink, and don’t give any medicine pills or liquid by mouth until your child is completely awake and alert.
8. Try to keep track of how long the seizure lasts.
9. If safe, make a video of the seizure and e-mail to the provider through mykidschart or neurotriagenurses@childrensdayton.org.
10. Your child may be sleepy or may take a while to get back to normal after the seizure. Stay with your child until he or she is awake and aware, and let your child rest after the seizure.

get emergency medical care or call 911 if your child

• Has a seizure lasting more than 5 minutes or is having repeated seizures
• Has trouble breathing
• Has a bluish color on the lips, tongue, or face
• Falls or hits his or her head before or during a seizure
• Seems to be sick
• Has a seizure while in water
• Has any symptom that concerns you
• If continues to have a seizure after rescue medication

think prevention!

If your child has a known seizure condition, be sure that he or she gets plenty of rest and takes any prescribed seizure medicine on time.

what is a seizure?

Epilepsy is a seizure disorder in which electrical signals in the brain misfire, causing temporary communication problems between nerve cells. Someone who gets recurrent seizures is thought to have epilepsy.

more to know

Anyone can get epilepsy, but over half of new diagnoses are in kids. Conditions that may lead to repeated seizures include infections, brain or blood vessel malformation, brain trauma, metabolic or chromosomal disorders, strokes, and brain tumors. More often than not, there’s no identifiable cause for epilepsy, though it does tend to run in families.

Epilepsy symptoms can be mild to severe depending on the person. Someone with epilepsy might have temporary confusion, a loss of consciousness or awareness, staring spells, or convulsions (intense, involuntary muscular contractions). Most people with epilepsy will feel the same symptoms during each of their episodes.

There’s usually no need to call 911 if the person having a seizure is known to have epilepsy. However, someone who is injured, has another medical condition (like diabetes), or has an unusually long seizure or multiple seizures may need medical attention.

A variety of treatments are available to lessen the effects of epilepsy, including medications, special diets, medical devices, and even surgery. Some kids with epilepsy outgrow their seizures by the time they’re teens, while other kids need lifelong management with medication.

keep in mind

Epilepsy can be frightening, but with proper treatment and special safety precautions, people who have it can live normal lives.

what can I do to manage my epilepsy?

Self-management is what you do to take care of yourself. You can learn how to manage seizures and keep an active and full life. Begin with these tips:

• Take your medicine as prescribed
• Talk with your doctor or nurse when you have questions
• Recognize your child’s seizure triggers (such as illness, missed medication and sleep deprivation)
• Keep a record of your seizures
• Get enough sleep
• Lower stress

types of seizures

generalized seizure

A generalized seizure affects both sides of the brain from the onset of the seizure.

possible side effects

• Unresponsiveness
• Loss of consciousness
• Sudden crying out
• Falling
• Stiffness
• Clenched jaw
• Rhythmic jerks
• Shallow breathing
• Bluish skin
• Possible loss of bladder or bowel control

Generalized seizures can have varying durations but usually lasts a couple of minutes. After a generalized seizure the person may experience confusion, no recall of seizure, headache, difficulty walking, fatigue/sleepiness. 

focal seizure

Focal seizures start in one part of the brain and affect the part of the body controlled by that part of the brain. Focal seizures have the potential to spread to a generalized seizure.

possible side effects:  

• Repetitive movement such as picking at clothes or skin
• Staring
• Eye blinking
• Lip smacking
• Chewing or swallowing motions
• Tongue thrusting
• Impaired awareness
• Tingling sensations
• Unresponsiveness
• Clumsy gait
• May struggle or flail at restraint. 

After a focal seizure the person may experience sleepiness, brief partial paralysis on one side of the body, or speech or vision issues.

EEG (electroencephalogram)

information and image from KidsHealth

what it is

An electroencephalogram (EEG) is a test used to find problems related to electrical activity of the brain.

An EEG tracks and records brain wave patterns. Small metal discs with thin wires (electrodes) are placed on the scalp, and then send signals to a computer to record the results. Normal electrical activity in the brain makes a recognizable pattern. Through an EEG, doctors can look for abnormal patterns that indicate seizures and other problems.

why it’s done

Most EEGs are done to diagnose and monitor seizure disorders. EEGs also can identify causes of other problems, such as sleep disorders and changes in behavior. They’re sometimes used to evaluate brain activity after a severe head injury or before a heart transplant or liver transplant.

the procedure

An EEG can be done in the doctor’s office, a lab, or a hospital. Your child will be asked to lie on a bed or sit in a chair. The EEG technician will attach electrodes to different locations on the scalp using adhesive paste. Each electrode is connected to an amplifier and EEG recording machine.

The electrical signals from the brain are converted into wavy lines on a computer screen. Your child will be asked to lie still because movement can change the results.

If the goal of the EEG is to mimic or cause the problem your child is having (like seizures), he or she may be asked to look at a bright flickering light or breathe a certain way. The health care provider performing the EEG will know your child’s medical history and will be ready for any issues that could come up during the test.

Most EEGs take about an hour. If your child needs to sleep during it, the test will take longer. You might be able to stay in the room with your child, or you can step outside to a waiting area.

what to expect

An EEG isn’t uncomfortable, and patients do not feel any shocks on the scalp or elsewhere. Still, having electrodes pasted to the scalp can be a little stressful for kids, as can lying still during the test.

getting the results

A neurologist (a doctor trained in nervous system disorders) will read and interpret the results. Though EEGs vary in complexity and duration, results usually are available in a few days.

risks

EEGs are very safe. If your child has a seizure disorder, your doctor might want to stimulate and record a seizure during the EEG. A seizure can be triggered by flashing lights or a change in breathing pattern.

MRI

information from KidsHealth

what it is

Magnetic resonance imaging (MRI) is a safe and painless test that uses a magnetic field and radio waves to produce detailed pictures of the body’s organs and structures. An MRI differs from a CAT scan (also called a CT scan or a computed axial tomography scan) because it doesn’t use radiation.

An MRI scanner consists of a large doughnut-shaped magnet that often has a tunnel in the center. Patients are placed on a table that slides into the tunnel. Some centers have open MRI scanners that have larger openings and are helpful for patients with claustrophobia. MRI scanners are located in hospitals and radiology centers.

During the examination, radio waves manipulate the magnetic position of the atoms of the body, which are picked up by a powerful antenna and sent to a computer. The computer performs millions of calculations, resulting in clear, cross-sectional black-and-white images of the body. These images can be converted into three-dimensional (3-D) pictures of the scanned area. These images help to pinpoint problems in the body.

why it’s done

An MRI is used to detect a variety of conditions, including problems of the brain, spinal cord, skeleton, chest, lungs, abdomen, pelvis, wrists, hands, ankles, and feet. In some cases, it can provide clear images of body parts that can’t be seen as well with an X-ray, CAT scan, or ultrasound. MRI is particularly valuable for diagnosing problems with the eyes, ears, heart, and circulatory system.

An MRI’s ability to highlight contrasts in soft tissue makes it useful in deciphering problems with joints, cartilage, ligaments, and tendons. An MRI can also be used to identify infections and inflammatory conditions, or to rule out problems such as tumors.

procedure

An MRI exam usually takes 20-90 minutes to perform, depending on the type of study being performed. Your child will lie on the movable scanning table while the technologist places him or her into position. The table will slide into the tunnel and the technician will take images. Each scan will last a few minutes.

To detect specific problems, your child may be given a contrast solution through an IV. The solution, which is painless as it goes into the vein, highlights certain areas of the body, such as blood vessels, so doctors can see them in more detail. The technician will ask if your child is allergic to any medications or food before the contrast solution is given. The contrast solution used in MRI tests is generally safe. However, allergic reactions can occur. Talk to your doctor about the benefits and risks of receiving contrast solution in your child’s case.

As the exam proceeds, your child will hear repetitive sounds from the machine, which are normal. Your child may be given headphones to listen to music or earplugs to block the noise and will have access to a call button in case he or she becomes uneasy during the test. If sedated, your child will be monitored at all times by a machine that checks the heartbeat, breathing, and oxygen level.

When the exam is over, the technician will help your child off the table; if sedation was used, your child may be moved to a recovery area.

what to expect

MRIs are painless. Your child may have to lie still on the MRI table for 20-90 minutes during the procedure, but there are brief breaks between each scan. Unless sedation is used or you’re told otherwise, your child can immediately return to normal routines and diet.

If your child feels cold lying on the MRI table, a blanket can be provided. Most sedation will wear off within 1-2 hours, and any contrast material given should pass through the body in about 24 hours.

getting the results

MRI images will be viewed by a radiologist who’s specially trained in reading and interpreting the scans. The radiologist will send a report to your doctor, who will discuss the results with you and explain what they mean. In most cases, results can’t be given directly to the patient or family at the time of the test.

risks

MRIs are safe and easy. No health risks have been associated with the magnetic field or radio waves, since the lowenergy radio waves use no radiation. The procedure can be repeated without side effects.

If your child requires sedation, discuss the risks and benefits of sedation with your doctor. Also, because contrast solutions can cause allergic reactions in some kids, be sure to check with your doctor before your child receives any solution. There should be medical staff available who are prepared to handle an allergic reaction.

If your child has decreased kidney function, this is an important medical condition to discuss with the radiologist and technician before receiving IV contrast since it may lead to some rare complications.

medications

• Take all medications as prescribed on a regular schedule, equal spacing between doses.
• Do not increase, decrease or stop on your own.
• Compliance problems during adolescence may lead to suboptimal anti-epilepsy medication (AED) blood levels, resulting in deteriorating seizure control or symptoms of toxicity.

driving

• Must be seizure-free for 6 months to drive, even if seizure occurred with medication being reduced/stopped and subsequently resumed medication.
• BMV paperwork has to be completed by your neurologist/nurse practitioner.
• Must report seizures to BMV.
• Medication compliance is a must!

alcohol and drugs (prescription and/or non-prescription)

• Abstain from alcohol; it is illegal at this age.
• Lowers seizure threshold; ability to have a breakthrough seizure is high.
• Increases risk of sedating effect of drugs and alcohol and may be lethal.
• Avoid antihistamines (Rondec, Benadryl, Pediacare).
• Avoid taking the antibiotics Erythromycin, Zithromax, and Biaxin if on Tegretol or Carbatrol (may create toxic Tegretol or Carbatrol levels).
• Report all herbal supplements to your provider as they can decrease the effectiveness of your AED medication.

sleep

• Minimum of 7–8 hours each night. Consistency is key. Sleeping 4 hours at night with a 3-hour nap does not count.
• Sleep deprivation may cause a breakthrough seizure.

nutrition/exercise

• Eat regular meals. Avoid high-fat, high-calorie snacks and meals.
• Keep moving! Aim for 60 minutes of physical activity a day. Activities could be walking, jogging, playing your favorite sport, yoga or even dancing.
• Some seizure medications affect metabolism of glucose and lipids, leading to weight gain. These include, but are not limited to: benzodiazepines (Klonopin, Ativan, Diastat, Onfi), Depakote, Neurontin, Trileptal.
• Some seizure medications can contribute to a decrease in appetite and weight loss. These include, but are not limited to: Felbatol, Topamax, Zonegran, Diamox.

bone health

• Altered bone metabolism and bone density can occur with long term use of some AEDs.
• Lifestyle modifications including regular weight-bearing exercise, abstaining from smoking, and eating a diet high in calcium with vitamin D helps to minimize the risk of bone loss and osteoporosis.
• Minimum daily recommendations: 
  • Calcium 1,000 mg. Foods high in calcium include: low-fat yogurt or Greek yogurt, American cheese, cow’s milk, almond milk, orange juice, cheddar cheese, spinach, broccoli, oatmeal
  • Vitamin D 600 IU. Foods high in vitamin D include: salmon, tuna fish, eggs, margarine
• Sun exposure is perhaps the most important source of vitamin D, but remember to wear your sunscreen.
• Long-term use of seizure medications require periodic bone density scans, especially if the patient is unable to walk.

young girls and adolescent females

• Hormone fluctuations at her first period may change seizure patterns.
• Some seizure medications change the metabolism of female sex hormones leading to altered menstrual cycles and potential for unexpected pregnancy.
• Having epilepsy does not directly affect your ability to become pregnant. Your provider can help you decide the right treatment plan before becoming pregnant.
• All three forms of contraceptives (oral, implant, and injectable) can be affected by seizure medications. This should be discussed with the prescribing doctor.
• Call office to speak with your neurologist before considering or starting any form of contraceptives.
• All women of childbearing age and on seizure medication should take folic acid 1 mg daily to promote fetal health and decrease birth defects. All women not on seizure medication should be on 400 micrograms daily. There is a risk of birth defects with AEDs.

activity safety

• Always be monitored while in any body of water
• Always wear a helmet when participating on anything with wheels (bike, skateboard, etc.)
• Always be monitored when climbing/risky activities

your responsibility

• Compliance: Non-compliance with medication may lead to suboptimal AED levels and possibly deteriorating seizure control.
• Keep all scheduled appointments.
• Get adequate sleep and nutrition.
• Ask questions, educate yourself, and plan ahead.
• You are in control of your body and life!

MyKidsChart

MyKidsChart is your one-stop shop for everything related to your child’s care plan. MyKidsChart offers a safe and secure environment to access your care history, lab results, prescription refills and a way to send messages to your physician.

For more information click here.

Facebook group

Join our Facebook group for support and resources by searching “we wear purple at Dayton Children’s Hospital

websites

epilepsy.com

• Information on epilepsy
• Seizure Alerts and Sudden Unexpected Death in Epilepsy
• Seizure Action Plan
• Women’s Health

ninds.nih.gov

National Institute of Neurological Disorders and Stroke (NINDS)

epilepsy-ohio.org/

Epilepsy Alliance Ohio

for rescue medications

• Diastat Acudial 
• Intranasal Versed
• Nayzilam
• Valtoco

Epilepsy Foundation services

Epilepsy Foundation Kids Crew (for ages 14 and under)

The Epilepsy Foundation thinks that kids have big hearts and are able to do amazing things. They created the Kids Crew to help you:

• Raise epilepsy awareness to increase acceptance with your family, friends and community
• Educate others – Teach people about epilepsy and help them learn the facts
• Share your stories about epilepsy so others can learn from your experience
• Join in events – Sign up for Lemonade for Livy, The Purple Pumpkin Project and local walks

The program is free. Once you join, you will receive a membership kit, quarterly newsletter, and Kids Crew updates. You can collect themed pins as you complete activities. You can also connect with other Kids Crew members to make a difference.

For more information, click here or email Kids-Crew@efa.org

Epilepsy Foundation Greater Dayton Region

Local programs are for anyone diagnosed with epilepsy or a seizure disorder. Participants must live in Auglaize, Champaign, Clark, Darke, Green, Logan, Mercer, Miami, Montgomery, Preble or Shelby counties. Services offered include:

• Prescription assistance – Help with prescribed medicine or devices for epilepsy-related medications.
• Art therapy program for patients 4-years-old and older.
• Support groups for teens.
• Facebook support groups for parents of children with seizures and epilepsy – Visit https://www.epilepsy-ohio.org/programs-services/support-groups/ for more details.
• Regular updates about epilepsy-related services and news by signing up for their email list at ohioepilepsy.org (scroll to the bottom of the page).

For more information, call 937-233-2500, visit ohioepilepsy.org or find them on Facebook.