If you think you had a seizure-like episode, this is the place to be. From the first seizure to possible treatments, this section walks you through the steps you may take to determine whether or not you have epilepsy. Seizures may have many different appearances, which can be difficult to recognize. Some of the following may be indications that a seizure is occurring. Look for and make note of particular patterns of behaviour if they occur too often to be attributed to chance.
Lapses in consciousness and/or awareness
- daydreaming or short attention blackouts
- sudden falls for no reason
- memory gaps
- lack of response for short periods of time
- dazed behaviour with the inability to communicate or talk for a brief period of time
- a blank stare followed by repetitive meaningless movements
- unusual sleepiness and/or irritability when awakened from sleep
- rhythmic movements of the head (head nodding) or head dropping
- rapid blinking or upward eye rolling
- frequent unwarranted complaints from the child that things look, sound, taste, smell or feel “funny” or different than they actually are
- sudden bowing or bending movements by babies who are sitting down
- sudden stomach pain followed by sleepiness or confusion
- repeated movements or jerking movements that looks out of place or unnatural
- bed wetting or waking up with a bitten tongue for no apparent reason
- lip smacking, chewing or swallowing
- reflex anoxic seizures (pallid syncopal episodes, fainting spells triggered by a certain stimulus)
- fainting (syncope or vasovagal episodes)
- breath-holding episodes
- myoclonic jerks of sleep
- non-epileptic episodes (NEAs, psychogenic non-epileptic seizures, psychological seizures)
- febrile convulsions
Sometimes seizures may go unnoticed while others may be confused with other events, such as a stroke, which can also cause falls or migraines. Physicians use Electroencephalogram (EEG) recordings to accurately diagnose the condition. As a person ages, their seizures may change in duration, intensity or frequency. Seniors and young children have the highest rates for newly-diagnosed cases of epilepsy. Although seizures look different, they have certain things in common. Click here for a list of important seizure facts to remember. Did you experience a possible seizure? It may be hard to know for sure when seizures come in so many different forms. If you suspect you may have had a potential seizure, meeting with your physician is a good place to start. A physician or nurse practitioner will ask questions about the seizure episode(s), including what happened before, during and after the seizure(s). To make an accurate assessment, healthcare providers will ask for:
- medical history including
- information about any other unusual events (e.g. focal twitching of a finger, toe, arm or leg; short periods of unresponsiveness; myoclonic jerks)
- general physical and neurological exams (e.g. blood tests, EEG, MRI scan, CT scan)
- family history
- a good description of the episode(s) including
- a description of what the person experienced before, during and after the seizure
- a list of the events leading up to the seizure
Many people will not remember their seizures or may only remember the very beginning of their seizures. If someone else has witnessed the episodes, have them provide a description for your healthcare provider or have them go to your appointment with you. It may be helpful to make a chart to record the frequency of your episodes and the symptoms you experienced. To start your own seizure record, click here to download a chart complete with common symptoms you may experience. If your physician suspects you have had seizures, s/he may suggest you have an electroencephalogram (EEG) test. An EEG measures the electrical activity in the brain. This test may help determine seizures by locating the source of any abnormal activity that may cause seizures. Familiarizing yourself with the procedures may help reduce any fears or anxieties you may be experiencing. Click here to learn more about EEGs. For parents of children who may be undergoing an EEG, click here for information An imaging test looks at the brain’s structure rather than function. Common brain imaging tests include: If you have completed two trial medication periods and are still unable to obtain good control of your seizures, it is important to ask your physician to refer you to an epilepsy specialist. Often where medication fails, brain surgery is an effective way to control or even eliminate seizures. The procedure can eliminate epilepsy in 80 per cent of those who are good candidates for surgery. The following tests help determine whether you are a good candidate for brain surgery: Medical tests can be extremely frightening and stressful for a child. To ease the child’s fears and prepare him/her for medical tests, parents should provide as much information as possible in a way that the child will be able to understand. The child should know:
- why s/he is going for the test
- where the test will take place
- what will happen during the test
- who will be the people involved in the testing
- what medical equipment will be used
If you are the parent or caregiver of a child who will be undergoing diagnostic testing, be supportive and listen to your child’s concerns. Validate your child’s feelings by acknowledging and discussing any fears s/he may have. Diagnostic Tests: An initial diagnosis of epilepsy will probably come from your family doctor or pediatrician. While they can diagnose and treat epilepsy, all children with serious, ongoing epilepsy should be seen by a pediatric neurologist. The neurologist may then refer the child back to the pediatrician for ongoing therapy. For a teenager, you may want to consider a neurologist who treats adults. Contact us for a list of neurologists and pediatric neurologists with phone numbers. In a majority of cases, the medical treatment of epilepsy goes well. Occasionally, parents may feel they want a second opinion about their child’s condition. If you ask, most doctors will be very willing to refer your child for a second opinion. It is a good idea to consult the doctor who is currently treating your child before seeking a second opinion. Working in partnership with your doctors will help to achieve the best care for your child.
Doctors need to determine the type of seizures your child has before they can prescribe the right medication or other treatment. Because they often do not actually see the seizures, they rely on your description to distinguish among the possible seizure types. The better you describe the seizures, the better your doctor’s diagnosis will be. To provide the most accurate descriptions, consider the following tips:
- Ask a doctor you respect – your family doctor or pediatrician – to recommend a neurologist.
- Find out what hospital affiliation the neurologist has. If possible, you may want your child to be treated by a doctor affiliated with one of the teaching hospitals.
- Look for a neurologist with whom you feel you can talk, who answers your questions and who is willing to seek a second opinion if necessary.
- Become a member of your local epilepsy organization and attend awareness events where you can talk with local neurologists and parents of the children they treat.
- Remember: Only another doctor can refer to you to a neurologist.
In addition to your child’s full medical history, you should try to be ready to answer the following questions:
- Keep written records of your child’s seizures. Your local epilepsy organization can provide checklists for this purpose.
- Use a video camera. A recording of your child’s seizures may help your doctor. Your local epilepsy organization may be able to assist with this.
Your appointment with the doctor will go better if you make some preparations in advance.
- What was your child doing at the time of the seizure?
- What was the exact time of day?
- What took place before the seizure?
- What called your attention to the seizure (e.g. cry out, fall, stare, turn of the head)?
- Did your child’s body become rigid?
- Were there jerks or twitches? What part of the body moved first? Next?
- Did your child’s eyelids or eyes roll? To which side?
- Did your child’s skin show changes (e.g. flushed, clammy, blue)?
- Did the breathing change?
- Did your child talk or perform any actions during the seizure?
- Did your child urinate or defecate during the seizure?
- How long did the seizure last? Time the seizures with a watch or clock. This is difficult to remember during a seizure, but it helps the doctor.
- Could you make contact with your child during the seizure? Did s/he respond?
- What was your child’s behaviour after the seizure (e.g. alert, drowsy, confused, fearful, any memory of what happened, etc.)
- Did your child report any unusual feelings, sensations or perceptions that occurred before the seizure?
- If your child is taking medication when was the last dose?
With appropriate medication, the majority of seizures can be controlled. Some types of seizures, however, resist control by anticonvulsant medication. Sometimes, these seizures are associated with developmental delay or with behavioural problems. If your child continues to have seizures despite good medical treatment, your doctor may wish to refer him/her to a centre, which specializes in the treatment of drug-resistant epilepsy. Many major centres across Canada have clinics and hospitals that treat childhood epilepsy. Contact your doctor or local epilepsy organization for more information about the various programs. To gain admittance into the hospital, a medical doctor must refer your child. People are more likely to have epilepsy if they have certain other conditions (i.e. autism, cerebral palsy, learning difficulties or intellectual disabilities). This does not necessarily mean epilepsy causes these conditions or vice versa. Rather, it is usually an underlying brain dysfunction or brain damage that causes both conditions, although it is difficult to determine if this is the case. A person who has another condition in addition to epilepsy is more likely to have seizures that are more severe and difficult to control. It is sometimes difficult for physicians to make a definitive diagnosis in young children. This is because problems may not be apparent or may be too subtle to accurately detect and diagnose at a very young age. As the child grows older, however, a more accurate diagnosis and prognosis can be made. Early diagnosis is crucial for early intervention. People with epilepsy are also more likely to have mental health problems at some point in their life, with anxiety and depression being the most common. Epilepsy has very different effects on different people. While some people have well-controlled seizures, others may have several obvious seizures a day in addition to being diagnosed with another medical condition such as autism or cerebral palsy. Therefore, every person’s situation is unique and each person has his/her own special needs.
- Confirm your appointment time earlier that day so you are not inconvenienced.
- If your child is to have diagnostic tests, such as a sleep-deprived EEG, make sure you understand the doctor’s instructions and follow them carefully.
- Make written notes before your visit so you will not forget the questions you want to ask. If your appointments with the doctor are rushed, you might even send your questions ahead of time in letter so the doctor has a chance to consider them.
- Bring all of your child’s medications (in the bottles) and dose schedule to the appointment. You should also have a medication calendar in which you record any untoward events that have happened and blood levels if you know them.
- Be prepared to give the doctor your pharmacy’s phone number.
- Bring to the doctor’s attention to any problems that have occurred, even if you feel that they are trivial. Any change in your child’s status may be relevant.
Autism Autism is a neurological disorder involving difficulties relating to and communicating with other persons. About 30 percent of children with autism also have epilepsy. Children with autism often have abnormal EEGs, as do children with epilepsy, which may add to the difficulty of diagnosing each of these conditions in the same child. Other more detailed tests will often be needed to determine whether the child with autism is also exhibiting abnormal brain wave activity because of epilepsy. For more information, visit the Autism Society Ontario website.
Cerebral Palsy Cerebral palsy describes a group of disorders, which affect body movement and muscle coordination. The condition is caused by brain damage experienced before, during or shortly after birth. Depending on the region of the brain affected, the condition may cause stiffening of the body and limbs, involuntary movement, difficulty with fine and gross motor skills, and difficulty with perception and sensation. Approximately 33 percent of children with cerebral palsy also have epilepsy. For more information, visit the Ontario Federation for Cerebral Palsy website.
Down Syndrome Down syndrome, a disorder caused by a chromosomal abnormality – the presence of an extra chromosome 21 in each cell. The characteristics of a child with Down syndrome may include a smaller than normal and abnormally shaped head, flattened nose, protruding tongue, upward slanting eyes, short and broad hands, a shorter than average height and intellectual disabilities. For more information, visit the Down Syndrome Association of Ontario website.
Fragile X Syndrome Fragile X syndrome is a genetic disorder that is passed down from the mother’s side of the family. Boys are more often affected, although girls may be affected as well. Physical characteristics of those with Fragile X syndrome include a long narrow face, prominent ears, jaw, chin and forehead, macro-orchidism (enlarged testicles), hyperextended finger joints, double-jointed thumbs and an excessive growth rate into the early childhood years. Of all the people affected with Fragile X syndrome, 15 to 20 percent experience seizures. The individual may experience an intellectual disability, autistic-like behaviours, strabismus (cross-eyed), enlarged head, slanted eyes, poor muscle tone and coordination, as well as many other characteristics. For more information, visit the Fragile X Research Foundation of Canada website.
Intellectual Disabilities When a child is diagnosed with an intellectual disability, it can have major implications for both the child and the family. The label itself can be associated with many negative consequences. It is important for people to realize that with special assistance programs, children with intellectual disabilities can be productive members of the community. It should be emphasized that epilepsy doesn’t cause intellectual disabilities or vice versa. Rather, both may be the result of a brain disorder. For more information, visit the Ontario Association for Community Living website.
Learning Disabilities Children with epilepsy have the same range of intelligence as those without the condition. Of those children with learning problems, however, up to 50 percent will also have epilepsy. That is, children with learning disabilities have a higher incidence of epilepsy. A child is most likely to have a severe learning disability if s/he has severe uncontrolled seizures, in addition to a physical and/or intellectual disability. In some cases, the same brain damage responsible for the seizures may also be responsible for causing specific learning difficulties. Generalized seizures (absence or tonic-clonic seizures) are more often associated with cognitive problems than are partial seizures (simple partial or complex partial seizures). Partial seizures tend to have more specific effects, particularly on memory and language functioning. Many learning difficulties can be overcome, using special education services, and close observation and monitoring of the child’s educational progress. For more information, visit the Learning Disabilities Association of Ontario and Ontario Ministry of Education’s Special Education websites.
Lennox-Gastaut Syndrome Lennox-Gastaut syndrome is an extremely destructive disorder, which still baffles many physicians. It affects between 3 to 10 percent of children with epilepsy, more commonly males. The peak age for onset is between three to five years of age with extreme incidence occurring in the first and tenth years of life. There is commonly a history of epilepsy in the family of the affected individual, though there is no known case of familial Lennox-Gastaut syndrome. The most characteristic manifestation of the Lennox-Gastaut syndrome patients die from inherent problems and complications within 10 years of its onset. The disorder often persists into adulthood causing a multi-faceted array of emotional problems in up to 25 percent of patients. Almost all patients continue to have disabilities, including learning arrest, loss of previously-developed skills, language difficulties, and impaired organization of movement. More information about Lennox-Gastaut syndrome.
Mental Health Problems
Muscular Dystrophy Muscular dystrophy is the name of a group of muscle disorders, which are caused genetically. These disorders are characterized by progressive weakening and wasting of the voluntary muscles that control body movement. As the muscle wastes away, they are replaced by fatty and connective tissues. Clinical symptoms of muscular dystrophy usually appear in childhood between two to five years, although some types of muscular dystrophy do not appear until later in life. The disease progresses at different rates, depending on the individual. It progresses steadily without remission in all children. A wheelchair usually is necessary by late childhood or early adolescence. Breathing becomes difficult as the disease reaches later stages. The disease shortens one’s life span. For more information, visit the Muscular Dystrophy Association of Canada website.
Rett Syndrome Rett Syndrome is a severe neurological disorder, which affects females within the first two years of life. After approximately two years of apparently normal development, the child suffers from the loss of speech and the ability to walk normally and begins to exhibit autistic-like behaviours (repetitive hand movements such as clapping, body rocking). Approximately 80 percent of children who have Rett Syndrome also have epilepsy. There is no cure for the disease. For more information, visit the Ontario Rett Syndrome Association website.
Tuberous Sclerosis Tuberous sclerosis is a genetic disorder that causes benign tumours to form in a variety of organs including the brain, eyes, heart, kidney, skin, and lungs. Up to 80 percent of individuals with tuberous sclerosis will experience seizures at some point in their life. Tuberous sclerosis is the largest known genetic cause of epilepsy.