Seizure disorders are common among people with developmental disabilities. Seizures may take different forms, appearing as anything from mild strange feelings to severe muscle spasms. For some people, seizures are easy to diagnose and control and may even go away on their own. For others, seizures may be a lifelong problem and may present significant risks to their health and well-being.

Some of the people you support may have a seizure disorder. Understanding how to support people with seizure disorders is an important way to help keep them safe and healthy. This article will help you learn how to support people with seizures before, during and after a seizure occurs.

What are seizures?

A seizure is a sudden surge of electrical activity that can affect part or all of the brain. This affects how a person feels or acts for a short period of time. Some seizures can hardly be noticed. Some seizures cause confusion or unusual movements, odd feelings or a change in behavior. Some people “go blank” for a few seconds. Other people remain fully conscious during a seizure. They can sometimes describe their experience later. Others may lose consciousness or may be confused when the seizure ends.

Seizure activity may include:

• Muscle spasms – which can range from slight twitching to serious convulsions
• Numbness or tingling in part of the body
• Blank stare or fluttering eyes
• Drowsiness or confusion
• Loss of consciousness
• Inability to speak
• Loss of bladder and muscle control
• Seeing or hearing things that aren’t there

A seizure usually lasts for only a minute or two. While seizures are generally not directly harmful, a person could get hurt during a seizure from falling down or hitting against something.

Who is more likely to have seizures?

Seizures are more likely to occur in people with the following medical conditions:

• Congenital conditions (e.g., Down syndrome, Angelman Syndrome, Tuberous Sclerosis)
• Autism
• Cerebral palsy
• Brain abnormality, injury or infection
• Diabetes
• Stroke or Alzheimer’s disease in the elderly
• Mental retardation

Also, people with certain genetic factors (i.e. family history of seizures) may be more at risk of having seizures.

People with high fevers caused by other illnesses are also at increased risk for seizures.

What can trigger or provoke a seizure?

Not every person is affected by seizures in the same way. What will trigger a person to have a seizure depends on what kind of seizures the person has, and the general health and life of the individual. Here is a list of things that can trigger a person to have a seizure:

• Missing doses of seizure medication either intentionally or unintentionally
• Stress – physical or emotional
• Lack of sleep or poor quality of sleep
• Alcohol consumption – binge drinking or heavy consumption
• Drug use (e.g., cocaine, amphetamines, and other stimulants)
• Hormonal changes during menstrual cycle
• Reaction to prescription or over-the-counter drugs or medication
• Reaction to herbal supplements
• Very low or high blood sugar
• Sensory stimuli – such as flashing lights, repetitive sounds, video games, or touching parts of body (reflex)
• A high fever

What should I do if someone I support has a seizure?

As a direct support professional, you may be the first person to respond when someone has a seizure. You can help by being prepared before, during and after a seizure.

Before a Seizure

• Learn about seizure disorders and how to support individuals who experience seizures.
• Make sure that you and everyone who helps to support individuals with seizure disorders knows what to expect when a seizure occurs, understands correct seizure first aid and knows when to call 911.
• Develop an individual plan for each person who has seizures.
• Talk with the person and their doctor about the type of seizures and proper treatment.
• Ask the person to wear a medical identification bracelet or necklace.
• Keep a record of the person’s seizures, including a description of what was happening before the seizure and the person’s feelings after the seizure.
• Help the person avoid things that are known to increase the risk of a seizure for him or her.
• Think of ways to make the environment safe to avoid injury during a seizure.
• Ask the person to tell you if they begin to feel they are going to have a seizure.

During a Seizure

• Stay calm, reassure others who may be nearby and talk to the individual in a soothing voice.
• Help the person lie down and turn them to the side to ease breathing.
• Put something soft – such as a pillow, a towel or folded clothes – behind the individual’s head.
• Loosen the clothes around the person’s neck.
• Clear the area around the person of anything hard or sharp.
• Do not restrain the person.
• Do not try to force their mouth open or put anything into their mouth.
• Time the seizure with your watch.
• Do not attempt artificial respiration except in the unlikely event that a person does not start breathing again after the seizure has stopped.

After a Seizure

• Talk with the person about what happened – people often are not aware of what goes on during a seizure.
• Be friendly and reassuring.
• Stay with the person while he or she rests until full awareness has returned.

You should call 911 for medical help if:

• This was the person’s first seizure they’ve had in their life
• The seizure lasted longer than 5 minutes, or another seizure starts quickly after the first one
• The person was injured during the seizure
• The seizure occurs while the person is in water
• The person has trouble breathing after the seizure
• The person is pregnant, has diabetes or has heart disease
• The person does not fully recover (consciousness doesn’t return after the seizure has stopped).

How can I help the people who I support manage their seizure condition?

The best thing you can do is to make sure that the individuals you support understand and follow all of their doctors’ instructions. You can also help them develop their own plan to manage their seizures.

Help notice signs of oncoming seizure.

Before a seizure starts, some people experience strange feelings called an ‘aura.’ An aura can be a feeling of uneasiness, dizziness, or unusual smells, tastes or sights. If a person you support mentions that they are having these feelings, talk with them. Ask them if they notice anything different or unusual. After it is over and full awareness has returned, ask them again to describe how they were feeling before the seizure occurred.

Write down what they describe and talk about what the person can do when he or she notices signs of a seizure, for instance, asking for help lying down, turning to the side, and getting something soft to put underneath their head.

Encourage a healthy lifestyle.

These are things people can do every day to manage their seizure condition:

• Take seizure medication as prescribed.
• Manage stress.
• Exercise regularly.
• Eat healthy foods.

You can help people with seizure conditions by encouraging them with these daily tasks.

Share safety tips.

Help the person to protect themselves from harm during a seizure, usually from falling or losing consciousness. For instance, you can help them think of ways to make their environment safe. When a person who has seizures recognizes how they feel before a seizure occurs, they can try to make sure that they aren’t standing or in an otherwise unsafe situation.

Where can I find resources about living with a seizure disorder?

The best way to learn more is by talking to a doctor or a health care professional.

Contact the local chapter of the Epilepsy Foundation (800-332-1000). They have free information and often have classes or support groups.

Ask you’re local Regional Center if they have materials that you can use to teach people with developmental disabilities about seizures.

You can also check out these other resources that provide tips for living safely with seizures:

• Epilepsy Foundation
• Look Up Local Affiliate of Epilepsy Foundation
• Living with Epilepsy
• All about Epilepsy and Seizures
• Safety and Seizures
• Better Health Channel: Epilepsy – Seizures Explained (Epilepsy Foundation for Victoria, Australia) (Search for “epilepsy” or “seizure”)
• Importance of Preparedness and Self-Management
• Downloadable Guide to First Aid for Seizures
• Epilepsy Foundation – First Aid