Living with Seizures
We know that occasional brief seizures do not hurt the brain. However, the biggest concern with seizures is that a child will be physically injured when he has a seizure. Most children are not aware they are having a seizure and cannot protect themselves. Injury is the #1 risk with seizures. Seizures may interfere with school work and other activities. If a seizure lasts longer than 30 to 60 minutes it may cause scarring of the brain but this is very rare.
Drowning is the #1 cause of injury from seizures. Never leave your child alone in a bathtub or near ANY water. A child can drown in less than an inch of water.
Older children usually prefer to shower and can be unsupervised but they need to:
- Remove the drain stop if they are showering in a tub.
- Leave the bathroom door unlocked.
- Make sure someone is in the house when they are showering.
No child or teen should ever swim unsupervised:
- Parents should watch all young children and be within reaching distance of them in the water.
- Older children and teens may swim with a buddy with a life guard present. The buddy should know how to recognize a seizure and be able to call for help if needed.
- Extra caution should be taken in water that is not clear. Life preservers should be worn when swimming or boating in oceans, lakes, and ponds because you may not be able to find a child who goes under in murky water.
Other safety precautions include:
- When children are riding bikes, skateboarding, or rollerblading, they should always wear a protective helmet.
- Children should avoid heights. They should not play on high playground equipment or climb trees, and they should not sleep on the top bunk of a bunk bed.
- Water heaters should be set to no more than 120 degrees F. to prevent a burn.
- Older children should not cook using the stove top without an adult watching.
If a child’s seizures are not well controlled and are occurring on a daily or weekly basis, greater precautions may be necessary such as not allowing any water activities and bike riding. Some children who have frequent seizures resulting in falls and frequent injuries may benefit from wearing a protective helmet during any physical activity. Talk to your child’s neurology provider about what precautions they recommend for your child.
Try not to panic! Seizures are very scary but you need to stay calm. It is your job to protect your child during the seizure to keep them from being hurt.
As soon as you know your child is starting to have a seizure:
- Gently try to get them into a position where they are safe. If they are standing or sitting, get them to the floor or a soft surface where you can lay them on their side.
- Stay with your child. Use a watch or clock to time the seizure. Observe your child’s behavior and movements.
- Do not put anything in your child’s mouth. They cannot swallow their tongue and often they clench their teeth together. If you try to put something in their mouth you are likely to hurt them or yourself.
- Do not try to stop or restrain their movements.
- Children often foam at the mouth or drool during a seizure. If they are turned on their side, this will run out of their mouth rather than pooling in the back of their throat.
Some children do not have convulsing types of seizures, but may just stare or act unusual. If your child has this type of seizure, you just need to stay with them and keep them safe. You may not need to have them lie down on their side. Refer to the Helping HandTM Seizure Care for more details.
After a seizure, especially a convulsion, children often are very confused and tired. Sometimes they fall into a deep sleep and sleep for several hours. It is okay to let them sleep. Check on your child frequently until he returns to his normal self. Unless told otherwise, call your neurology provider the next business day and tell them about your child’s seizures. Your child may need his medication adjusted.
Call 911 if:
- Your child’s seizure lasts more than five (5) minutes.
- Several seizures occur in a short period of time without the child recovering in between the seizures.
- Your child was hurt during the seizure.
- Your child will not respond in any way to you 30 minutes after the seizure.
- Your child is having trouble breathing.
- Or if you are concerned something is wrong.
Most seizures last less than two (2) minutes. If a seizure is continuing after five (5) minutes it may not stop on its own. Most children do not have any serious problems with breathing during a seizure. Often children will be pale or blue around the mouth during a seizure. This is common during a seizure and not a sign of a problem. During a seizure the brain is working hard and needs plenty of oxygen. The human body naturally takes some oxygen away from the area around the mouth to send to the brain causing the blue look around the mouth. This does not mean your child is not getting enough oxygen to the brain.
Most seizures last less than two (2) minutes. If a seizure lasts longer than five (5) minutes then you need help to stop the seizure. The only way to stop a seizure is with medicine. There is nothing else you can do to stop a seizure. You cannot stop the seizure by holding or talking to your child.
During a seizure your child cannot take medicine by mouth. It must be given through an intravenous line (IV) or in the rectum or nose where it will be absorbed through the mucous membranes. Common rescue medications used to stop seizures are diazepam (Valium®), lorazepam (Ativan®), and midazolam (Versed®). Sometimes when a child has seizures that last longer than a few minutes, we give parents one of these rescue medications to have at home. When a child has a long seizure at home, parents can give a rescue medication through the rectum or nose to stop a seizure. This can prevent extra 911 calls and visits to the emergency room. All of these medicines will make your child more sleepy than usual after a seizure.
If your child has a seizure that lasts longer than five (5) minutes, call 911. The emergency squad may be able to give one of these medicines or they will take your child to a hospital where the staff will be able to give the medicine.
Most children who have epilepsy will live a very full and long life. However, very rarely a child may die from an injury or drowning during a seizure, a very long seizure (60 minutes or longer), or from Sudden Unexplained Death in Epilepsy (SUDEP). SUDEP is not well understood but we do know some factors increase the risk for SUDEP. People who have convulsive type seizures, have uncontrolled seizures, are on multiple seizure medications, stop medications suddenly, don’t take their medications regularly, or have developmental disorders, are at greatest risk for SUDEP.
The best way to keep your child safe from injuries and SUDEP is to use seizure precautions, make sure your child takes his medication regularly, and work closely with your neurology provider to control your child’s seizures as well as possible.
Many children outgrow their seizures. A child is more likely to outgrow his seizures if he has a normal EEG, normal MRI, normal development, no other neurological problems, and the seizures are controlled easily with medication.
After a child begins taking medicine and has no seizures for two (2) years, many children are slowly taken off the seizure medication. You should never stop medication on your own. If you stop medication suddenly it may cause your child to have a seizure. Many (60 to 75%) of children who are slowly weaned off medication will remain seizure free.
Flashing lights can trigger seizures in some children. For most children with epilepsy, TV’s, computers and video games are safe. We usually learn if your child is sensitive to flashing lights during an EEG. If this is the case he may be at increased risk for a seizure when he is exposed to flashing lights from a TV, computer or video game, or strobe lights. Hopefully, medication will decrease the risk so that no specific modifications are needed. However, some precautions may be necessary when watching TV or playing video or computer games. Your child should not sit too close to the TV, take a 10 or 15 minute break if playing computer games longer than one (1) hour, avoid these activities when overtired, and lights in the room should stay on. Wearing sunglasses with blue lenses when driving or riding in a car will decrease the risk of seizures triggered by flashing sunlight on bright days.
There are a few factors which may trigger someone to have a seizure when they are otherwise well controlled. These are often called breakthrough seizures. Factors which may trigger seizures are lack of sleep, illness and fever, missed medications, alcohol use, and significant mental or physical stress.
If seizures are well controlled most children can play most sports. Some precautions may be needed. Sports and strenuous activities very rarely trigger seizures in children. There is even some evidence that physical activity may actually help decrease the risk of seizures. We encourage all children to be physically active but to use extra precautions as needed.
Anyone who is responsible for the care or supervision of your child should know that your child has epilepsy and is at risk for seizures. They should know what to do if your child has a seizure. This may include teachers, grandparents, childcare providers, coaches, babysitters, nannies, friends and parents of friends who may be responsible for your child’s care. If the school has questions about epilepsy and what to do if your child has a seizure, the Epilepsy Foundation of Central Ohio (EFCO), may be able to go to the school or daycare center to provide seizure training.
Children who have epilepsy are at risk for having learning problems in school. However not all children will have problems. Some children will have problems with memory, processing information, and paying attention in school. Some children with epilepsy also have Attention Deficit Disorder (ADD) or Attention Deficit Hyperactivity Disorder (ADHD).
Learning problems may occur because the seizure activity or the medications interfere with learning. However, most often a child’s learning problems are due to the same underlying problem in the brain that causes the seizures. Often we cannot identify exactly what this problem is, but know there is a difference in how the brain is working which causes both the epilepsy and the learning difficulties. If your child is having problems in school, talk with your neurology provider. Public schools in Ohio are required by law to provide an evaluation for learning disabilities and to provide special education services. A neuropsychological evaluation done at the hospital may help to understand the learning problem.
Just as there is an increased risk for learning problems in children with epilepsy, there is also an increased risk for depression and anxiety. This may be a result of learning they have epilepsy and dealing with the changes this has on their life. This may have been present even before they began having seizures and may be related to the underlying problem that is causing seizures and learning problems. In addition, all seizure medications have some risk for causing changes in mood and behavior.
Common signs of depression and anxiety include: withdrawing from friends and family, eating less, problems sleeping, excessive worries, crying easily or more often than usual, negative statements about themselves, increased fears, or not wanting to attend school or activities. If you have any concerns about your child, please talk to your neurology provider or call and talk with a nurse in the office. If your child ever has thoughts of harming himself or others, call the neurology office immediately.
Most teenagers are able to drive if they take their medicine regularly and have not had a seizure for at least six (6) to twelve (12) months. When applying for a driver’s license, they will be given a form that they need to bring to their neurology provider to complete and return to the Bureau of Motor Vehicles. Laws vary from state to state so it is important to check your state laws if you live or move outside of Ohio.
It is important for you to take an active role in managing your epilepsy. You need to find out everything you can about your seizures, your medication, and epilepsy in general.
To prevent seizures you should:
- Take your medicine every day at the same time.
- Get at least eight (8) to nine ( 9) hours of sleep each day.
- Not use any alcohol, tobacco or other drugs that can interact with your medications and/or trigger seizures.
- Talk to your neurology provider. Don’t let your parents do all of the talking at your appointments!
Tell your parents and/or your neurology provider if you think you have had a seizure, are having any side effects to your medicine, problems with school, or feeling sad or worried.
All available birth controls methods can be used by women with epilepsy. However, some methods may interact with seizure medications and cause either the birth control or the seizure medicine to be less effective. Even if your daughter is using birth control for regulation of periods or other reasons, these may interfere with her seizure medications. Talk to your neurology provider before starting any form of birth control.
Most women with epilepsy have normal, healthy babies. However there is a slightly increased risk of birth defects in babies born to women who take seizure medicine. Fifty percent (50%) of all pregnancies in the U.S. are unplanned. Therefore, as a precaution we recommend that all teenage girls take 1 mg of folic acid on a daily basis if they are taking seizure medicines once they start having periods. Folic acid may decrease the risk of some birth defects.
It is important to talk to your healthcare team before, during, and after pregnancy.
Nationwide Children's Hospital Epilepsy Center
Epilepsy Foundation of America
Epilepsy Foundation of Central Ohio
Epilepsy Information Services: 1-800-642-0500