Seizure Safety

A seizure occurs when the nerve cells in the brain send out sudden, excessive, uncontrolled electrical signals. Everyone’s brain has continuous electrical activity. When something goes wrong with this activity, your child may have a seizure. Seizures can produce a variety of symptoms depending on what part of the brain is involved. Seizures can range from something as simple as a strange feeling in your stomach to uncontrolled rhythmic movements of your entire body, called a convulsion.

About ten percent (10%) of people will have a seizure at some time in their life. Some of those people will develop epilepsy.

Epilepsy is characterized by two (2) or more unprovoked seizures. Once a person has had two (2) seizures which were not provoked by something such as fever, illness, or withdrawal from drugs or alcohol he will be diagnosed with epilepsy. Epilepsy is common. You may not know someone has epilepsy unless you see them have a seizure. Seizures occur in 1.5% of people. More people are living with epilepsy than cerebral palsy, multiple sclerosis, and Parkinson’s disease combined. Each year in the U.S., 45,000 children under the age of 15 will develop epilepsy. Epilepsy is more common in children under the age of five (5) and adults over the age of 65, but can occur in anyone at any time in their life.

Once someone has one seizure, there is about a 50% chance that they will go on to have another seizure. Fifty percent (50%) of those people will have their second seizure within six (6) months and 80% within two (2) years. After having two (2) seizures, most children (80%) will have another seizure within four (4) years. If a child has an abnormal Electroencephalogram (E-LEK-tro-en-SEF-ah-lo-gram), 2 neurological exam, delayed development, or a structural problem with their brain, they are more likely to have further seizures after their first seizure.

When a child has an unusual event or episode, a seizure may be suspected. A detailed description of what the event looked like is the most important information to help the healthcare team decide if your child had a seizure. Your medical team will probably not see your child have a seizure. However, they usually know what happens in the beginning, middle and end of a seizure. Your description will help your doctor or nurse practitioner determine if the episode is a seizure, and if so, what kind of seizure it is. We understand that seeing your child have a seizure is very scary and you may not remember many details. Write down the details of the seizure as soon as possible after it occurs. It is also important to keep a seizure calendar or record of all of your child’s seizures. Always bring this information with you to your child’s neurology appointments.

The most useful medical test used to diagnose seizures is an Electroencephalogram (E-LEK-tro-en-SEF-ah-lo-gram) or EEG. An EEG records the electrical activity in the brain. An EEG cannot tell us for sure if your child has had a seizure unless he/she has an actual seizure during the test. This rarely occurs. However, if your child has abnormalities in electrical activity even when he is not having a seizure, this tells us that your child may be at increased risk for seizures. This information, along with how you describe the event, can usually help us to determine if your child had a seizure.

If a child has an abnormal EEG it does not indicate they had a seizure or ever will have a seizure. Likewise, if a child has a normal EEG, it does not mean they will never have a seizure. An EEG is just a snapshot of the electrical activity in the brain at that moment in time. Abnormal electrical activity may not show up when the EEG is performed.

There are many different types of seizures. Not everyone falls and shakes when they have a seizure. But not everyone who does fall on the ground and starts shaking is having a seizure. There are many other kinds of problems that can look like seizures. Some things that can be confused for seizures in children include syncope (fainting), breath holding, reflux (spitting up) in babies, and anxiety attacks.

There are two main types of seizures: generalized and partial. One type is not better to have than the other; they are just different. It is helpful to figure out what type of seizure your child has in order to choose the most effective medication.

If your child’s EEG is abnormal it may be able to tell us if the seizures are partial or generalized. Sometimes we can tell what type of seizure your child is having by how you describe the event. Generalized seizures are those that start from both sides of the brain. Partial seizures start in just one part of the brain but may spread to involve the whole brain. This can happen so fast that it is hard to tell they are coming from just one area. Simple partial seizures involve such a small area of the brain that the child may be aware they are having a seizure and can respond and possibly even talk during the seizure. A complex partial seizure involves a larger area of the brain and the child cannot respond and is not aware they are having a seizure. Please refer to the Helping HandTM: Seizure Care and Helping HandTM: Seizures (Partial) for more information.

Seizures that are provoked (such as the case with seizures caused by fever) are not considered epilepsy. Brains of children between six (6) months and five (5) years of age are sensitive to illness and fever. When a young child has a fever, he may have a seizure. It is not usually epilepsy if it is just fever related.

When seizures are not brought on by fever or another event, it is an epileptic seizure. In most (about 70%) children who have epilepsy, the cause for the epilepsy is either unknown or genetic. We do not know very much about the genetics of epilepsy but we are learning more about it every day. There are a few genetic tests that can be done for epilepsy but a specific genetic cause cannot be found for most children. The genetics of epilepsy are very complex and there may not be anyone else in the family who has ever had epilepsy.

One of the most common causes of epilepsy in children is a developmental disorder or birth defect. This is the case in about 20% of children with epilepsy. Other causes for epilepsy include head injuries (5%); infection of the brain such as meningitis or encephalitis (4%); stroke (1.5%), and brain tumors (1.5%). Many children get minor bumps to the head and these minor injuries rarely result in epilepsy. Most children who have epilepsy due to a brain injury have had a major head injury and have been in the hospital. Many parents worry when their child has a seizure that he may have a brain tumor. Brain tumors are rarely a cause for seizures in children. They are a much more common cause of seizures in adults.

Sometimes an EEG will show us a specific pattern of electrical activity in the brain that can give us clues as to what is causing the epilepsy. We know that some patterns are always associated with genetic causes and occur in children who are otherwise healthy and have no other neurological problems. In those children we often do not need to do any other testing because we know the epilepsy is genetic. There is no blood test for most genetic forms of epilepsy. Other times the EEG may show unusual activity in one area of the brain. If so, we will likely do an MRI (Magnetic Resonance Imaging) of the brain to see if there is any structural problem in that area of the brain. The most common type of structural problem is cortical dysplasia. This is an area in the brain that did not develop correctly and now may be causing seizures. This problem may not cause any other problems until a child has a seizure. These abnormalities do not grow like brain tumors. They have been there since birth and do not change over time. If we are worried that your child has other neurological problems in addition to seizures or has developmental problems for an unknown reason we may order other blood and urine tests.

Some children have a very specific pattern on their EEG and a specific type of seizure which may tell us that the child has an epilepsy syndrome. If your child has an epilepsy syndrome this means that we know more about what to expect in relation to your child’s epilepsy. We may be able to tell you what type of seizures we expect your child will have, the age at which seizures usually start, when they might outgrow their seizures, and what medications work the best. Two common epilepsy syndromes in children are Benign Rolandic Epilepsy and Childhood Absence Epilepsy.

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.