What is epilepsy?

Epilepsy (EH-puh-lep-see) is a condition that effects the nervous system, resulting in an ongoing tendency to have seizures. Epilepsy is usually diagnosed in children or teenagers, but can also develop later in life. In some cases, the seizures associated with epilepsy may resolve or become less frequent as the child grows.

What is a seizure?

A seizure occurs when there is uncontrolled electrical activity in the brain. A seizure may be provoked or unprovoked. When there is a reason for a seizure, it is called a provoked seizure. Other reasons for provoked seizures may be a brain injury or tumor, an infection of the brain/spinal cord (meningitis), low blood sugar (hypoglycemia), high fevers (febrile seizure), substance use and/or withdrawal, and toxins. However, in some cases, a seizure can occur spontaneously, meaning there are no factors (except uncontrolled electric activity) that provoke it to occur. A seizure can be described as a focal or a generalized seizure. Depending on the type of seizure, there may be different signs and symptoms.

Are there different types of epilepsy?

Yes, the type of epilepsy someone has depends on the type of seizure the person experiences. As we previously mentioned, there are two different types of seizures, focal and generalized.

Generalized seizures occurs when there is uncontrolled electrical activity on BOTH sides of the brain. A few different types of seizures are considered generalized, such as absence seizures, tonic-clonic seizures, and myoclonic seizures.

Focal seizures occur when there is uncontrolled electrical activity on ONE side of the brain. A person may or may not lose consciousness during a focal seizure.

What are the signs of a seizure?

Sometimes it is difficult to know whether a person is experiencing a seizure or not. Some people with epilepsy may experience shaking or stiffening of one or all limbs, twitching of the mouth or lips, movement of the eyes, slurred speech, or loss of consciousness. Other people with epilepsy may stare blankly into space. When someone experiences the physical symptoms of a seizure (shaking, stiffening, twitching, eye movements) they cannot control the symptoms.

What to do if you witness a seizure?

Seizures may be scary to watch, but generally, they are over within a few seconds to a few minutes and they are not painful to the person experiencing them.

If you witness someone experience a seizure, follow these steps to help them.

1. Stay calm
2. Help lower the person to flat surface, but don’t force them
3. Once the person is on the ground, help roll them on to their side
4. Loosen any clothing that is may be tight around the neck and remove glasses, bags, etc.
5. Do not try to stop their uncontrolled movements, this means do not hold or restrain the person
6. Make sure the area around the person is safe, free from objects that may hurt them if they bump into them
7. Never leave a person who is seizing alone, make sure their breathing is OK
8. Never put anything into a person’s mouth, this can cause an injury or choking
9. Speak in a calm voice, reassuring voice, during and after the seizure.

When a seizure ends, people may be very tired or confused. These symptoms are known as the “post-ictal state,” and gradually improve after the seizure.

When to call 9-1-1:

In most cases, you will not need emergency help if this person has known epilepsy. However, here are some reasons you need to call 9-1-1 during a seizure.

• Diabetic
• Suffers an injury due to their seizure
• Develops difficulty breathing
• Changes colors (specifically blue) around their mouth
• Experiences a seizure that lasts greater than 5 minutes
• Experiences multiple seizures back to back
• Individual does not have known epilepsy

What causes epilepsy?

Epilepsy can sometimes be difficult to diagnose. However, sometimes people are born with risk factors that increases their chances of developing epilepsy. People who had abnormal brain development in utero (period of time when a baby develops) are at a higher risk for developing seizures.

What are some environmental causes of epilepsy?

When you go to an amusement park or movie theater, you may have noticed a sign or heard an announcement about the use of flashing lights and/or loud noises. This is to alert individuals with epilepsy, who may have seizures that are triggered by things in their environment. Epilepsy triggers can be bright or flashing lights, loud noises, lack of sleep, stress, and overstimulation (prolonged screen time).

How is epilepsy diagnosed?

If a person has one unprovoked seizure in their lifetime, this does not mean they have epilepsy. A diagnosis of epilepsy is usually confirmed after a person has one of the following:

• Experience two or more unprovoked seizures within a lifetime.
• One unprovoked seizure and a high probability of future unprovoked seizures based on diagnostic testing.
  • An example of diagnostic testing may be, an abnormal electroencephalogram (EEG), which is a test that monitors brain activity, showing a seizure tendency
• A seizure or EEG change that fits a specific type of epilepsy.

How is epilepsy treated?

Epilepsy can be managed by taking a daily medication to prevent seizures. There are many different types of medication for epilepsy.

Is it safe to receive vaccines with epilepsy?

Yes, it is safe for all adolescents and young adults with epilepsy to receive vaccinations. It is actually encouraged because becoming sick from an infection can cause seizures to occur more frequently.

Currently, while the COVID-19 pandemic is ongoing, it is recommended that people with epilepsy receive the COVID-19 vaccination. There is no evidence currently that this vaccination will worsen epilepsy or place people at a higher risk for neurologic complications

Additional Resources: The Epilepsy Foundation is a large organization in the U.S. dedicated to giving all people with epilepsy full, healthy lives. The epilepsy website has many resources for people with epilepsy and their families and friends.

Can I get pregnant if I have epilepsy?

Yes! Women with epilepsy – just like women without epilepsy – are able to become pregnant and have children. Some women have separate medical conditions that make it harder to become pregnant. If you have epilepsy and do not have these conditions, your chances of becoming pregnant are similar to other women without epilepsy.

How long will it take me to become pregnant?

Studies have shown that epilepsy does not impact a women’s ability to become pregnant. Women with and without epilepsy who have been actively trying to become pregnant, should be able to do so, within one year. If you are having difficulty becoming pregnant after one year, speak with your health care provider (HCP) – you may have another medical condition impacting your ability to become pregnant.

If I become pregnant, will my children be healthy?

Yes, most women with epilepsy can have healthy children. However, there are some risks to pregnancy and childbirth.

Is it important for me to plan my pregnancy?

Yes, it is a good idea for people with epilepsy to plan pregnancies in advance. Pregnancy planning is associated with fewer pre-term births and birth defects. If you are planning a pregnancy, let all your doctors (i.e. neurologist, obstetrician-gynecologist, and primary care physician) know at least six months before trying to conceive.  Your neurologist may want to make changes to your antiseizure medications to minimize your seizures and also protect the future baby.

I have heard of folic acid. Should I take a supplement during pregnancy?

Yes, it is also a good idea to begin taking a daily folic acid supplement at least six months before you begin trying to become pregnant and continue the supplement throughout the entire length of your pregnancy. Folic acid supplements are important to take during pregnancy because folic acid supplements have been shown to reduce the risk of birth defects and improve brain development among children of women with epilepsy. However, it is important that you speak with health care provider (HCP) before starting any new medications, supplements, or vitamins.

Will my child be at risk for a birth defect?

In the general population, the risk of having a child with a birth defect is 2-3% (2-3 out of 100 children will have a birth defect). Among women with epilepsy, the risk is higher at 4-8% (4-8 out of 100 children). The risk depends on the type of anti-seizure medication that is taken during the pregnancy. If you are thinking about becoming pregnant, it’s important to talk with your neurologist to develop a plan before you become pregnant. This can help minimize medication risks during pregnancy, while ensuring your seizures are well controlled.

Should I take any vitamins during pregnancy?

Taking a daily folic acid supplement during pregnancy has been shown to reduce the risk of birth defects and improve brain development among children of women with epilepsy. Speak with your doctors about starting a daily folic acid supplement before becoming pregnant.

Will my child be born with epilepsy?

People with epilepsy may wonder if their children will have epilepsy. In the general population, about 1-2 out of every 100 people have epilepsy (1-2%). Among mothers with epilepsy, 5 to 10 out of every 100 of their children (5%-10%) will have epilepsy. While there is an increased risk that your children may have epilepsy, the risk is still low. Your doctor may advise speaking with a genetic counselor for more detailed information about your risk of having a child with epilepsy.

What if I am not ready to become pregnant?

No one can tell you whether or not you are ready for pregnancy, only you can decide. If you are unsure about pregnancy, it may be helpful to use a highly reliable method of birth control or practice abstinence.

Do antiseizure medications cause birth defects?

This is a great question with a complicated answer. In the general population (meaning those who do not have epilepsy) birth defects occur in 2-3% of all pregnancies. However, when you have epilepsy, planning with your partner and your neurologist plays an important role to ensure a safe and healthy pregnancy. Planning is important because although most individuals who use medication to treat their epilepsy will have healthy pregnancies, there is still a risk.

Why is there still a risk?

Anytime a person (with or without epilepsy) takes a medication or drug prescribed at a high dose, there is a risk for birth defects. The risk for birth defects varies based on several different factors such as the number of medications prescribed and amount of each medication prescribed to treat the epilepsy. It is important to mention that most people who take antiseizure medication to manage their epilepsy will have healthy children without birth defects. 

Information about Specific Medications

Below is a table that contains information about commonly used antiseizure medications and their associated risk for birth defects. Although you may find the information below helpful, it is still very important to have a conversation with your health care provider about your specific medication(s) and risk factors. Your health care provider knows you, your body, and your medications best!

Remember: Birth defects occur in 2 to 3 out of every 100 pregnancies (2-3%) among people WITHOUT epilepsy — that’s the general population.

* This degree of risk is similar to the general population without epilepsy.
** Valproic acid (also known as Depakote, Depakene, Valproate, or Divalproex Sodium) has been associated with the highest risk of birth defects among antiseizure medications.

I am worried; can I just stop taking my antiseizure medication?

Even if you find out that you are pregnant, it’s important to continue taking your antiseizure medication at least until you talk to your doctors (including your neurologist) for further guidance. Taking daily medication might be the safest option for you during pregnancy because seizures can also be harmful to you and the pregnancy.

What is the best way to ensure a healthy pregnancy for my unborn child and myself?

The best way to ensure a healthy pregnancy is by developing a plan before you become pregnant. Your planning committee should include your partner, neurologist, OB/GYN, primary care provider, and most importantly you! During the planning period, your neurologist may make some medication adjustments. If medication adjustments are recommended, your health care provider will explain and (likely) implement them before you become pregnant to ensure that the epilepsy is well controlled. Having a well-constructed plan can help reduce the risk of birth defects and ensure that both you and your child stay healthy.

Teens and adolescents living with epilepsy can lead fulfilling lives and participate in daily activities. They can go to work or school, independently take care of themselves, and play sports.  However, the seizures associated with epilepsy can be unpredictable and may occur during such activities. This means that some daily activities may require extra precautions to maintain safety. If you or someone you love has epilepsy, it’s important to know about the daily activities that require extra thought and what to do when a seizure does occur.  Take charge and empower yourself; learn about managing the risks for yourself and others with epilepsy!

What are some daily activities that require extra safety measures?

Many teens can go about their daily activities with little risk to their safety. However, for teens living with epilepsy, many daily activities require extra precautions.  Below are some examples of daily activities that for a teen with epilepsy require extra thought and care.

Home Safety:

            It is important to put safety precautions into place within the home to prevent injury if a person experiences a seizure. You can add padding over sharp corners (think fireplaces, coffee tables, counters, etc.), use non-slip carpets, and avoid glass tables.  If you or someone you love has frequent seizures, it’s a good idea for you or the individual to avoid climbing stairs alone. To help eliminate frequent trips up and down the stairs, keep common household objects on each floor.

Hygiene

            Often times, it is safer for a person with a history of epilepsy to take a shower rather than a bath. The reason being is that if a seizure occurs during a bath there is a higher risk of drowning due to submersion.  If someone experiences frequent seizures, it may be good idea to purchase a shower chair or sit on the bottom of the shower to avoid falling. It’s also a good idea to always shower with the bathroom door unlocked. That way if you or someone you love has a seizure, there is easy access into the bathroom to help.

Cooking

            When cooking over a stove, it’s safest to use the back burners. Using the back burners can prevent burns or other injuries if a seizure was to occur while cooking.

Driving

It’s safest to avoid driving if you have been experiencing frequent seizures. Consider asking others (i.e. family, friends, etc.), using public transportation, disability ride services, or ride share apps like Uber or Lyft. If your seizures are less frequent, talk with your health care provider (HCP) and learn about the laws in your state. Every state has different laws about when people with epilepsy are allowed to drive. In some states, driving is prohibited for 3 to 12 months following a seizure.

Curious about the laws in your state? The Epilepsy Foundation has a database of driving laws in each state.

Heights

Talk to your health care provider (HCP) to see if it is OK for you to climb ladders or be in unprotected elevated areas. If the HCP feels that is it OK, always make sure a support person is present in the event of a seizure.

Swimming

It’s a good idea to have a conversation with your health care provider (HCP) about whether or not it is safe to go swimming. If you and your HCP agree, always make sure you have a support person with you (while swimming) in the event of a seizure.

Fires

            Always place distance between you and any open fire pits, wood burning stoves, fireplaces, etc. Never use matches or candles if you are alone. If there is a fireplace in your home, use guards to prevent accidental falls into the fireplace.

What should I teach my friends about seizure safety?

Seizures may be scary to watch, but generally, they are over within a few seconds to a few minutes and they are not painful to the person experiencing them.

Follow these steps to keep the person you love safe during a seizure:

1. Stay calm
2. Help lower the person to a flat surface, but don’t force them
3. Once the person is on the ground, help roll them on to their side
4. Loosen any clothing that may be tight around the neck and remove glasses, bags, etc.
5. Do not try to stop their uncontrolled movements — this means do not hold or restrain the person
6. Make sure the area around the person is safe, free from objects that may hurt them if they bump into them
7. Never leave a person who is seizing alone — make sure their breathing is OK
8. Never put anything into a person’s mouth — this can cause an injury or choking
9. Speak in a calm voice, reassuring voice, during and after the seizure.

When a seizure ends, people may be very tired or confused. These symptoms are known as the “post-ictal state,” and gradually improve after the seizure.

When to call 9-1-1:

In most cases, you will not need emergency help if this person has known epilepsy. However, here are some reasons you need to call 9-1-1 during a seizure.

• Diabetic
• Suffers an injury due to their seizure
• Develops difficulty breathing
• Changes colors (specifically blue) around their mouth
• Experiences a seizure that lasts greater than 5 minutes
• Experiences multiple seizures back to back
• Individual does not have known epilepsy

Sometimes talking about epilepsy can be difficult – it’s normal to feel nervous. You may be concerned that others will treat you differently or there may be fear and misunderstanding about epilepsy and seizures. Talking about epilepsy can help spread awareness and demonstrate that children, adolescents, and young adults with epilepsy can lead full, active lives.

How should I tell someone I have epilepsy?

It’s important to remember that epilepsy doesn’t define you. It is only a part of who you are as a person. Explaining epilepsy to someone who does not know a lot about it may be frustrating and tiring at times, but it’s important to educate those around you! When you do discuss your diagnosis, state the facts and be honest about your diagnosis. The key message is that people with epilepsy deserve respect, understanding, and can lead full, active lives.

Helpful conversation starters:

• Did I ever tell you why I take medication every day? I have seizures and I take medication to prevent them.
• Do you know why I’m wearing this bracelet? It’s a medical alert bracelet because I have epilepsy which causes seizures.
• Did you know I have a seizure plan? It’s important to share seizure plans with your school nurse, coaches, and supervisors.

Make sure to use language that is easy to understand and encourage your friends and family to ask questions. To help others understand the details of your epilepsy and your medical needs, you can use the resources on this website or visit the Epilepsy Foundation.

If you have experienced two or more unprovoked seizures or your EEG (electroencephalogram) shows an increased risk for seizures, then you may be started on antiseizure medications. There are many different types of antiseizure medicines. These medicines are usually taken every day to twice a day. Below are some examples of different antiseizure medications, the type of epilepsy they treat, and their side effects.

The menstrual cycle can lead to changes in seizure frequency in some people with epilepsy.

What causes increased seizures in people born with female reproductive organs?

During the menstrual cycle, the body goes through many hormonal changes over the course of the cycle, which can increase the likelihood of experiencing a seizure. There are two main hormones involved in regulating the menstrual cycle: Progesterone and Estrogen. Due to the fluctuations in hormones, a person with female reproductive organs may be more or less likely to have a seizure at certain times in their menstrual cycle.

When am I at the highest risk for a seizure during my cycle?

There are two points in the menstrual cycle where an individual with female reproductive organs is at the highest risk for a seizure. The first is just before or during your period, between days 0-7. The second is just before ovulation between days 8-14. If you have epilepsy and you have noticed an increase in seizures related to your menstrual cycle, talk to your health care provider (HCP).

Are there certain gynecology conditions that affect people with epilepsy?

Yes, people diagnosed with epilepsy may be at a higher risk of polycystic ovarian syndrome (PCOS).

What is PCOS?

Polycystic ovary syndrome (PCOS) is a hormone imbalance that can cause irregular periods, unwanted hair growth, and acne. PCOS often begins during a girl’s teen years and can be mild or severe.

What are the signs of PCOS?

Some of the most common signs of PCOS include:

• Irregular periods that come every few months, not at all, or too frequently
• Extra hair on the face or other parts of the body, called hirsutism (her-suit-is-em)
• Treatment-resistant acne
• Weight gain and/or trouble losing weight
• Patches of dark skin on the back of the neck and other areas, called acanthosis nigricans(“a-can-tho-sis ni-gri-cans”)

I have heard diet and exercise helps PCOS. Will this also help my epilepsy?

While exercise and weight loss have been found to help improve PCOS in some patients, larger studies are needed to determine the best recommendations regarding efficacy of certain seizure medications and seizure risk in those with epilepsy and PCOS.

Am I at an increased risk for menstrual dysfunction due to my epilepsy?

People with epilepsy may be at a greater risk for menstrual cycle disturbances compared to the general population. These changes may include irregular cycles, prolonged menstrual cycles, or lack of menses. Studies estimate that 1 out of 3 people with epilepsy will have menstrual cycle dysfunction, compared to 1 out of 7 people in the general population.

Seizures are unpredictable and differ from person to person. Clear descriptions and/or recordings of seizures are extremely useful for you and your provider during epilepsy diagnosis, treatment, and management. Monitoring seizures allows you and your provider to assess seizure patterns, triggers, recovery behaviors, and medication efficacy. Additionally, monitoring seizures helps people living with epilepsy to relay information to family members, caregivers, friends, and teachers.

Can I use an app to monitor my seizures?

Yes, smartphone applications are a great way to record and monitor your epilepsy. Many applications have helpful key features such as seizure diaries, medication reminders, personal medical information, and first-aid instructions. Every application is different, and you should look for one that best suits your needs. It’s a good idea to read reviews, terms, and conditions before downloading or purchasing any applications. Remember, smartphone applications are never a substitute for medical information and care. If you have questions or concerns about your medical care, talk with your health care provider (HCP) as they know you and your care best.

Recommended apps for seizure dairies:

Recommended apps for medication reminders:

Recommended apps for personal medical information:

Recommended apps seizure first aid:

I have heard about seizure monitor devices. Are they worth it? 

A seizure monitoring device or alarm can help notify others when a seizure occurs by triggering an alarm so that others can assist you. These devices are currently being researched; however, there has not been sufficient evidence to indicate that these methods can guarantee the safety of a person living with epilepsy. No alert device or monitor will prevent seizures or their impact. If you would like to learn more about alert devices or monitors, check out The Epilepsy Foundation for further information. It is important to mention that medical devices and smartphone applications are not a substitute for medical information and care. If you have questions or concerns about your medical care, talk with your health care provider (HCP) as they know you and your care best.

Seizure monitoring alarm apps:

Medical Identification Devices

Medical identification tags are a good “old fashioned” way to display important medical information. There are many websites available where engraved medical bracelets/ID tags can be purchased. It’s recommended to place tags/bracelets on your wrists, ankles, or neck for easy identification and access. It’s best to abbreviate important medical conditions, medications, and allergies to allow easy interpretation by medical personnel.

What should go on my medical tag?

Below is what should be written on your tag and examples of how it should be written.

Sample:

• Name – Doe, Jane
• Medical conditions – Epilepsy, DM1 (means type one diabetes mellitus)
• ON (important medications) – Keppra, Insulin Pump
• NO MRI – RNS vs VNS – VNS (vagus nerve stimulator)
• NO (allergies) – PCN (penicillin), Sulfa
• ICE (in case of emergency) of family member or close friend who knows medical condition – Mom (Laura) 412-555-1212

Another great medication identification device is a medical alert seatbelt or backpack strap cover. These are usually waterproof and quite durable. They lay flat around a seat belt or backpack strap and fasten via Velcro or safety snaps. When the cover is opened, there’s a place for medical and emergency contact information.

Being a teen can sometimes be a lot to manage between school, work, homework, sports, other activities, and having a social life, it’s a lot to balance. It is easy for sleep to fall to the bottom of your priority list. However, for teens with epilepsy, getting adequate sleep each night should be a priority!

Why is sleep important?

Your body, including your brain, works best when you get enough sleep. You’re probably aware that you feel tired and rundown when you don’t get enough sleep. However, for a teen with epilepsy, a lack of sleep can be a trigger for increased seizure activity. It can also make it harder to concentrate or perform well while at school, doing homework, or playing sports. Additionally, poor sleep can impact your mood and slow down your reaction time. It’s extremely important to get at least 8 hours of good quality sleep each night, especially for teens and young adults with epilepsy

What causes sleep problems?

Sleep problems can be caused by an irregular schedule, stress, having many things on your mind, changes in your sleep environment (your bedroom is too hot, too cold, or too noisy), and by consuming stimulants such as caffeine too close to bedtime. Sometimes the cause is unknown. Exposure to electronic screens (phone, TV, computer) can also cause sleep problems.

Research has shown that many teens don’t get enough sleep. This is partly because during adolescence, teens’ “circadian rhythm” (the body’s internal clock) has a tendency to shift out of sync with the external clock. Instead of releasing melatonin (a hormone) early in the evening, the brain does so much later at night which makes it harder both to fall asleep early (enough to get a full 9 hours of sleep), and to wake up on time the next morning.

What is considered poor-quality sleep?

You may experience poor-quality sleep if you wake up frequently throughout the night, or do not feel rested in the morning. It is also a good idea to talk to your health care provider (HCP) if you are experiencing signs of poor-quality sleep, because you might have another medical condition such as sleep apnea that prevents you from achieving good-quality sleep.

How much sleep do I need each night?

Teens and young adults with epilepsy MUST achieve a minimum of 8 hours a night of good-quality sleep!

15 Tips to Follow:

1. Go to sleep at the same time every day. Don’t have different bedtimes on weekdays and weekends.
2. Wake up at the same time every day (or within 1 hour of your usual wake up time) EVEN on the weekends. A regular wake up time prevents sleep problems.
3. Avoid naps. Napping during the day can make falling asleep at night more challenging.
4. No caffeine after 3pm: Avoid beverages with caffeine (soda, coffee, tea, energy drinks, etc.) especially after 3pm.
5. Space out your meals: Avoid eating right before bed.
6. Can’t fall asleep? Get up and walk around or sit in a chair, until you feel tired. Do not use any electronics during this time.
7. Have a nightly routine before bed: Plan on “winding down” before you go to sleep. Begin relaxing about 1 hour before you go to bed. Try doing a quiet activity such as listening to calming music, reading a book or meditating.
8. Turn off the TV and ALL electronics including video games, tablets, laptops, etc., 1 hour before sleep, and keep them out of the bedroom.
9. Turn off your cell phone and all notifications (new email and text alerts) using a feature like “do not disturb” or, even better, leave your phone outside your room while you sleep. Studies have shown that a part of your brain continues to respond to certain lights and sounds even while you’re sleeping.
10. Make your bedroom quiet, dark and cool. If you can’t control the noise, try wearing earplugs or using a fan to block out other sounds.
11. Practice relaxation techniques. Try reading a book or meditating or writing a list of what you need to do the next day so you don’t have stress about remembering.
12. Don’t smoke, or quit if you do. Nicotine, alcohol, and marijuana can all keep you awake. Talk to your health care provider if you need help with substance use.
13. Avoid alcohol. Drinking alcohol at night can interfere with sleeping.
14. Move your body. Getting exercise early in the morning can improve sleep quality, but exercising at night can make it difficult for your body to relax when it’s time to sleep.
15. Reduce exposure to bright light in the last three hours of the day before going to sleep.

Growing up, your parent(s) or legal guardian likely helped you with your health care – they added you on their insurance, called for appointments, filled out forms, and kept track of medications. Now imagine those needs are your responsibility now – yikes! Transitioning to adult health care is a big step – just like going to college, getting your first adult job, or living on your own – transition requires preparation and self-advocacy. It’s never too early (or late) to ask your parent/caregiver or doctor questions about your health care needs!

Will I notice a difference in my care when I transition?

Transitioning your health care from a pediatric provider to an adult provider is exciting, yet a potentially nerve-wracking experience. However, always remember to be kind to yourself -you are learning a whole new responsibility and sometimes that can take time! You may find it helpful to begin independently managing your care around the age of 15-16 years old. That way, you will likely still have your parent(s) or guardian as well as your pediatric provider available to help guide you through becoming more independent. Create a plan with your parent(s) or guardian and your providers. Organize your care and ask questions, as this will help you begin navigating your transition to adult care. There are a lot of differences between pediatric and adult health care providers. However, as you begin the transition you’ll feel a change, but why? Well, when you’re a kid, your care involves the whole family — this is called child/family-centered care. When you transition to adult care, your care only involves you– this is called adult/patient-centered care.

Differences between Pediatric and Adult Health Care

**With exception of patients with special needs where parents/caregivers may have legal guardianship or power of attorney for health care needs

Will anyone be able to help me coordinate my care?

In pediatric healthcare, there are a lot care coordination options, but in adult healthcare there are very few. You will have to learn how to independently coordinate your appointments and care.

How should I prepare for my transition?

You should begin expressing interest to your parent(s)/legal guardian and health care provider (HCP) about becoming more involved in your care. Typically this is recommended to begin between the ages of 15-16 years old. Remember it is OK to start small, ask questions, and even ask for help. Transitioning your care comes with a lot of new responsibilities and it may seem overwhelming, but you will do great!

Tips for transitioning care:

• Requesting alone time with your clinician to practice becoming more independent in discussing your health care needs.
• Make a list of questions or concerns that you would like to discuss with your doctor
• Ask your health care provider (HCP) to explain information you do not understand
• Learn how to call in a prescription refill to your local pharmacy
• Request your own insurance card
• Ask your parent(s)/guardian about your medical conditions:

1) What is it?

2) When did it start?

3) For epilepsy: what do my seizure look like? Triggers?

4) Medications and/or rescue medications and dosages

• Ask for help making a list of your medical history (conditions, surgeries, family medical history, vaccinations) and medications (types, how much/when, medication allergies). Take pictures of the medications or keep a list in your phone for reference.
• Explore the portal to help you access your health and contact information. As you get older, it’s helpful to practice understanding and reviewing medical tests that were performed.
• Keep your health care providers phone number somewhere it is easily accessible.
• Practice scheduling and canceling appointments
• Ask for recommendations of adult primary care providers and specialists.

Congratulations on welcoming a new bundle of joy into your life! Bringing home a new baby is a special and exciting time. However, it can sometimes be chaotic and/or stressful. Accepting help and support from your partner, friends and family is completely acceptable. Below are some great tips on how to take care of yourself and your baby as a person with epilepsy.

Sleep Deprivation

Many new parents battle sleep deprivation when caring for a newborn. However, for individuals with epilepsy, sleep deprivation can be a trigger for increased seizures. For that reason, it is very important for people with epilepsy to try to avoid sleep deprivation and get a good night’s sleep consistently.

Here are some tips to help against sleep deprivation:

• Sleep while the baby sleeps. Taking naps while your baby naps is a great way help to decrease your sleep deficit.
• Take shifts. Work with your partner or support system to develop a schedule. It may be best for them to care for the infant during the night, while you sleep, to prevent sleep deprivation.
• Look for parenting support programs. Large metropolitan areas have companies set up to provide in-home services for new parents. The staff are often nurses, lactation consultants, etc. who can provide overnight care to your newborn, while you sleep!

It’s very important that you minimize your sleep deprivation and maximize your sleep to help protect you against seizures.

Seizure and Baby Safety

There are several precautions that people with epilepsy should consider when caring for a baby — especially if your seizures are frequent or unpredictable. Here are some tips to keep both you and the baby safe, while still providing care to the infant.

Here are some tips to help keep everyone safe:

• Sponge bathing instead of using a bathtub will keep your baby safe in the event of a seizure.
• Opt for the floor when changing diapers rather than a changing table or bed.
• Accessible supplies. Keeping diapers and changing materials on each floor of the home can help you avoid frequent trips up and down the stairs.
• Sit on the floor while feeding your baby. You can use a pillow of the back of a couch for support.
• Use a stroller to move the baby around the home instead of a baby carrier.

Infant Feeding

The choice to breast or bottle feed is completely up to you. Yes, there is evidence that shows that there are many benefits to breastfeeding for both mother and child. However, how you feed your child is a personal decision. All that matters is that the child is fed. Many parents are unable to breastfeed or choose not to breastfeed for various reasons –all of which are OK.

That being said, studies do support that breastfed babies have stronger immune systems with fewer episodes of diarrhea, respiratory infections, and ear infections. There has also been data to support a lower risk of Sudden Infant Death Syndrome (SIDS) among breastfed infants. Additionally, children who were breastfed as babies also have lower rates of allergies, asthma, childhood cancer, diabetes, inflammatory bowel disease, obesity, and autoimmune diseases such as lupus. If you choose to breastfeed, the American Academy of Pediatrics recommends breastfeeding through the first year of life.

What if I am concerned about my seizure medications?

Several antiseizure medications have been studied during breastfeeding. These include levetiracetam (Keppra), lamotrigine (Lamictal), oxcarbazepine (Trileptal), carbamazepine (Tegretol), topiramate (Topamax), zonisamide (Zonegran), and valproic acid (Depakote). If you are taking these medications, they are considered safe for breastfeeding. Studies have shown that very little (if any) of these medications is passed to your child through breast milk. However, there are many other antiseizure medications that have not been studied yet during breastfeeding. If you have a question about your antiseizure medication, talk with your health care provider (HCP).

Will I harm my child by breastfeeding and taking my antiseizure medication?

No. Studies have shown that children breastfed by a parent with epilepsy (who is taking one of the antiseizure medications listed above) have been shown to have similar or better IQ and neurological development than those who were formula fed.

What should I do?

It is ultimately a personal decision whether you want to breastfeed or formula feed. However, breastfeeding appears to be safe for women with epilepsy taking the antiseizure medications that have been studied. Breastfeeding also has many benefits for the baby.

Learning how to cope with a new epilepsy diagnosis is just as important as treating it. It may affect your daily life to some degree and being aware of its emotional impact can help you better manage your condition and everyday living.

Life is unpredictable. One of the many challenges of dealing with a life-changing diagnosis is not knowing how it will affect you. In the beginning, epilepsy can be a bumpy journey. Everyone will cope differently, but once you establish a better understanding of your diagnosis, everyday life with epilepsy will likely become easier. It is completely normal to experience emotional highs or lows, but be sure to share them with your health care provider (HCP).

What are some things I can do to cope?

It is important to educate yourself on your new diagnosis, as this will help you in your journey. You may choose to do this alone or with friends and family. Most teens find it helpful to include their friends and family. That way everyone can learn together, while supporting each other. However, it is completely up to you! You can educate yourself and others through the materials found on this website as well as through the Epilepsy Foundation.

I want to meet others with epilepsy, is this possible?

Yes, joining a support group for teens can be a great source of support from other people with epilepsy who are managing a similar diagnosis. Support groups are a great source of empowerment, providing you with confidence – which can help you accept your diagnosis. Check out the Epilepsy Foundation for support groups near you!

Is it OK to ask for help?

Yes, talking with people about your epilepsy is an important part of dealing with the diagnosis. Be open and honest with others and allow them to ask questions. You may also find it helpful to talk with a counselor, close friend or family member, or your health care provider (HCP) to help you work through any difficult feelings. It is important to remember that difficult feelings are normal and may come in waves.

Is it OK to embrace my diagnosis?

Yes! Although having epilepsy may feel overwhelming at times, you can still live a full, active, and rewarding life. It’s not uncommon for people living with epilepsy to feel anxious about going out in public in fear they may have a seizure. However, it is important to keep in mind that despite taking medications and modifying your lifestyle, seizures still may occur. Unfortunately, sometimes there is not much you can do, but it’s important to continue living your life. Remember, in general, people without epilepsy are genuinely helpful, concerned, and eager to learn more about your diagnosis.

How can I take care of myself during this time?

Self-acceptance, care, and love has never been more important than it is right now. Remember, epilepsy does not have to control your life; it is still YOUR life. Consider self-care activities such as meditation/relaxation exercises to help calm your mind. Engage in daily positive affirmations to boost confidence and calm negative thoughts. When you start to worry, take a few deep breaths and think of something positive, like an activity you enjoy or an important person in your life.

How can I take control of my life?

Seizures can cause a lot of anxiety and they are often unpredictable, but understanding how to manage them through lifestyle modification can help patients with epilepsy live more confidently and improve their quality of life. Remember to take your medication correctly and as prescribed. If you have questions about how to take your medications, contact your health care provider (HCP) right away. Your HCP will be able to answer any questions you have about your specific medications and how to take them. You may find it helpful to participate in regular daily exercise. Aside from exercise keeping you healthy, the endorphins (released during exercise) can also improve your mood! Another great tip is eating a diet that is healthy and well balanced as well as staying hydrated! Stick to a goal of drinking eight to one hundred ounces of water per day.

What are some seizure triggers?

Some people may have triggers, which means their seizures are caused by something outside the body such as stress, flashing lights, lack of sleep, caffeine, etc. If your seizures are triggered by stress, it’s important to learn your stress limits. This may help in managing the number of seizures you experience due to stress. If your seizures are triggered by a lack of sleep, try establishing a calming bedtime routine. This will help you fall asleep quicker and provide a consistent sleeping schedule. Try to aim for at least seven to nine hours of sleep each night. Sometimes, substances such as caffeine, alcohol, and tobacco can increase stress and anxiety. Talk with a trusted adult or your health care provider (HCP) to develop a plan to avoid using substances such as caffeine, alcohol, and or tobacco.

How can I maintain an independent lifestyle?

It’s important to stay as independent as possible. This will help you adjust to your new diagnosis and provide you with a sense of normalcy. Continue to participate in a consistent, daily routine (i.e. school, work, social activities). If you’re unable to continue working or attending in-person school, consider other activities to keep you socially engaged with others. State driving laws vary for people living with epilepsy, but if you are unable to drive, consider public transportation, taxis, or car services (Uber, Lyft) to maintain your daily routine.

Emotional wellness is important for everyone. It involves being aware of emotional and behavioral changes while still finding ways to enjoy life despite these changes.

Mood disorders, like depression and anxiety, can directly influence our emotional and physical well-being. Researchers have found that people living with epilepsy are twice as likely to report symptoms of depression and anxiety compared to people without epilepsy. The exact relationship between mood disorders and epilepsy is complicated. There seems to be a connection between epilepsy and psychological factors that contribute to an increased risk of depression and anxiety in people living with epilepsy.

How would I know if I am depressed?

Depression is a psychological condition that affects your feelings, behaviors, and thoughts. Being able to recognize changes to your thoughts, feelings, and behaviors is a great first step towards seeking help and support.

Here are some common symptoms of depression:

• Unexplained feelings of sadness, hopelessness, and/or helplessness for long periods
• Changes to sleeping habits (over or under sleeping)
• Changes to appetite (increase or decrease)
• Lack of energy
• Loss of interest in previously enjoyed activities, relationships, and social engagements
• Decreased motivation and concentration at work or school
• Thoughts of hurting yourself or ending your life
• Feeling like your life isn’t worth living

How would I know if I have an anxiety disorder?

Many people will experience anxiety at certain points of life. However, if uncontrolled, an anxiety disorder is when your anxiety becomes so great that you feel very scared or uneasy in situations that are not dangerous. For example, you avoid going out in public in fear that you may have seizure. Another example may be allowing the worry of when your next seizure may occur to consume you, causing you to devote all your focus to the “what if?” Worrying may cause you to perform poorly at school. All the worry may cause you to become physically sick or cause increased seizures. .

Here are some common symptoms of anxiety:

• Constant, unprovoked feelings of nervousness, distress, or unease
• Avoidance of situations, social interactions, or relationships that may provoke uneasiness
• People may also experience panic attacks. Panic attacks are extreme anxiety with episodes of intense feelings of nervousness, fear, and/or sudden onset of bodily symptoms (i.e. sweating, hyperventilation, fast heartbeats, and flushing of the skin)

What should I do if I am experiencing symptoms of a mental illness?

If you start to experience any signs or symptoms of depression or anxiety, schedule an appointment with your health care provider (HCP) right away. If you are experiencing any thoughts of hurting yourself or others, seek urgent medical attention at your nearest emergency room or call 9-1-1 or 9-8-8.

How can I manage my symptoms?

Learning how to manage symptoms of anxiety and depression is just as important as learning how to recognize them. Safe and successful treatment for depression and anxiety requires professional help from a therapist or psychiatrist. However, there are things that you can do to help lessen your symptoms!

Tips for symptom management:

• Stay connected. Having positive social or family relationships will help you feel supported during difficult times.
• Ask for help. Everyone needs help every once and awhile. It’s OK to ask for help! Talk with the people you trust (friends, family, health care provider, etc.) about how you’re feeling. It’s never too early to express yourself, especially when people are willing to listen and help.
• Don’t stop doing the things you love. This isn’t always easy to do, but it’s important to keep up with activities that make you happy!
• Exercise regularly. Again this isn’t always easy. Motivation is hard. However, during exercise, your body releases chemicals called endorphins that are natural mood alleviators!
• Maintain a healthy lifestyle. Limit the use of caffeine, tobacco, alcohol and keep (if possible) a consistent bedtime routine.
• Adopt new strategies. Techniques such as meditation/relaxation, music/art therapy, or journaling are good ways to help you understand and manage your feelings!

If the negative feelings you’re experiencing do not lessen with these methods or start affecting your everyday life, you may need more professional support. We all need help sometimes – there are trained specialists and support groups readily available.

Additional Resources

The treatment for depression and/or anxiety depends on the individual, and how their overall health, safety, and day-to-day life is impacted. Just like epilepsy, treatment and therapy isn’t one size fits all and should be developed based on you as a person and your mental health goals. It is not uncommon for people to use medication (in addition to therapy) to help manage their depression and/or anxiety. If you are considering the use of medications, contact your health care provider (HCP) to discuss which medication would be best for you!

Support groups, counseling, and other resources:

• National Alliance on Mental Illness
• SAMHSA: Substance Abuse and Mental Health Services Administration
• The JED Foundation
• Depression and Bipolar Support Alliance

What if I’m having thoughts of ending my life?

1-800-273-TALK (8255)/ Asian Languages: 1-877-990-8585
www.suicidepreventionlifeline.org

Other Specific Prevention Lifelines

• Asian LifeNet (Available in Cantonese, Mandarin, Japanese, Korean & Fujinese): 1-877-990-8585
• Hotline (24 hour line) (877) 990 8585
• DeQH (Hotline for South Asian/Desi LGBTQ+) 908 367 3374
• Person of Color Crisis Text Line: Text STEVE to 741-741 (mental health concern)
• Trevor LGBTQ Lifeline: 866-488-7386 or text START to 678-678 (Suicide)
• Crisis Text Line – Text “START” to 741741

Can I take birth control if I have epilepsy?

Yes, women with epilepsy can safely use birth control to prevent pregnancy; however, some antiseizure medications and methods of hormonal birth control may interact. If you are thinking about starting a new method of birth control, talk with your neurologist and include them in the discussion with your primary care provider or gynecologist. It’s important to include your neurologist in the conversation because they may need to make changes to your antiseizure medication.

What are some common drug interactions?

If you are taking any of the following antiseizure medications, you may experience interactions with common birth control methods: lamotrigine (Lamictal), topiramate (Topamax), oxcarbazepine (Trileptal), valproic acid (Depakote, Depakene, Valproate, Divalproex Sodium). There are no known drug interactions between birth control methods and levetiracetam (Keppra). If you don’t see your medication on this list, please talk to your healthcare provider for more information.

Do hormonal or copper uterine implants interact with antiseizure medications?

No, there are no known interactions between the hormonal or copper intrauterine devices and antiseizure medications.

Do hormonal implants interact with antiseizure medications?

Yes. Some antiseizure medications interact with hormonal implants such as Nexplanon. Talk to your healthcare provider for more information

What is the safest method of birth control when taking antiseizure medications?

Condoms are the only method of birth control that also protect against sexually transmitted infections. It’s a good idea to use condoms in addition to another method of birth control.

Sometimes talking to others about your child’s epilepsy can be difficult. You may be concerned about what people will think or say, but it is normal to have these concerns. It is also normal to be concerned that other children, parents, or teachers will treat your child differently or that there may be fear and misunderstanding about epilepsy and seizures. It is important to remember that by talking about epilepsy, you are spreading awareness and demonstrating that children, adolescents, and young adults with epilepsy can lead full, active lives.

How should I tell someone that my child has epilepsy?

It’s important to remember that epilepsy doesn’t define your child. Explaining epilepsy to others who do not know a lot about epilepsy may be frustrating and tiring at times, but it is important to educate others around your child. When you do discuss their diagnosis, be clear and honest, and state the facts. You have the ability to share an important message – people with epilepsy deserve respect, understanding, and can lead full, active lives. Remember, you are your child’s best advocate!

How should I explain my child’s epilepsy diagnosis to them?

When talking to your child about their epilepsy diagnosis, it’s important to be open, honest, and receptive to their fears and concerns. Stay optimistic and use age appropriate language and explanations. It is important to encourage them to be curious and ask questions about their diagnosis, as this is a learning process for them as well. If you do not know the answer to the question, either look it up together or write it down to have for their next visit with their health care provider (HCP). This will help your child become more involved in their own care, setting them up for success as they grow.

My child is getting older. How can I help them understand their diagnosis?

As your child gets older (starting at 12 years old), it will be important for them to understand their epilepsy diagnosis and how to explain it to others (friends, school staff, coaches, etc.). It’s important to continually reinforce an open dialogue and encourage their independence as they enter adolescence and young adulthood:

• Start with helping them understand their seizure types and triggers, medications, and treatments.
• Explain why it’s important to talk about epilepsy and why educating others will help reduce fear and misunderstanding.
• Let them know the importance for others to know what to do if they have a seizure. Share and explain their seizure action plan.
• Share “conversation starter” tips to initiate conversations with their friends.
• Help them understand what kind of questions they may be asked and how they could answer them.

Health care transition from pediatric to adult care is an exciting, yet potentially nerve-wracking, time for young adults, parents and caregivers. As a parent and caregiver, you’re familiar with many childhood transitions as your children grow and learn about the world. However, the transition into adolescence and young adulthood is perceived to be more challenging. Our youth are learning more about themselves, discovering their autonomy, and searching for more independence. It’s an interesting journey that sometimes creates apprehension for parents and caregivers, as they search for the best way to support their child. Many families do not consider health care transition until it’s suddenly upon them. Starting the conversation early with your pediatric providers can help make transition easier. An early start allows for consistent planning, proper guidance, and stronger communication between you, your child, and their health care provider. These actions will allow your child to achieve a level of health care independence that they are comfortable with, in turn providing comfort to you as a parent.

When should I begin planning my child’s transition?

Multiple medical organizations recommend parents/caregivers and doctors begin to plan for transition as early as 12 years of age, with incremental healthcare milestones achieved prior to full transition around 18-20 years old. Health care transition for those with special needs (chronic medical, behavioral, and/or intellectual disabilities) may require more in-depth planning and legal support.

Differences between Pediatric and Adult Health Care

**With exception of patients with special needs where parents/caregivers may have legal guardianship or power of attorney for health care needs

To build self-care, a structured partnership between doctors, youth, and parents is vital. Parents can help their youth learn to manage their health care needs in the following ways:

• Open discussions with your child about their medical condition.
• Make a list. Help your child develop a list of their medical history, allergies, and medications.
• Allow them to take more responsibility in taking their medicine.
• Encourage your child to make appointments with their pediatric provider.
• When you see their pediatric provider, discuss your child’s transition to adult healthcare. Consider asking:
  • How should I best prepare my child to meet alone with you?
  • What do they need to learn to get ready for adult health care? How should we assess their readiness?
  • What information about privacy and consent should we learn? (State laws vary on adolescent privacy and confidentiality)
• For youths with more complex, chronic medical and/or behavioral care:
  • Can we prepare a medical summary for the new provider? When should we start?
  • If my child needs help making medical decisions, where can I find information? Is legal support available?
• Have a discussion about when your child should formally transition to adult providers and request suggestions. Inquire what kind of doctors the youth would require (i.e. primary care, specialists, ancillary therapies), along with referral suggestions, and how the process occurs.