Epilepsy For Dummies Cheat Sheet

This Epilepsy For Dummies Cheat Sheet includes information about neuropsychological (neuropsych) tests, genetic testing for identifying the cause of epilepsy, the ketogenic diet as a treatment for epilepsy (when appropriate), and seizure safety devices to wear, or to use either at home or when out and about.

Why neuropsychological tests matter for people who have epilepsy

A neuropsychological test (or "neuropsych") looks at how the brain works in areas such as memory, attention, language, problem-solving, coordination, and emotions. Unlike other evaluations, a neuropsych shows how the brain processes information. The insights can help children (or adults) get helpful recommendations for succeeding at school or in daily life.  

Not every neurologist automatically recommends a neuropsych evaluation unless a patient is being evaluated for surgery to treat their epilepsy. If the neurologist doesn’t suggest a neuropsych, ask about a referral. Insurance often covers the testing when a doctor recommends it to investigate whether seizure activity is causing changes in thinking or behavior. Wait times can be long, and getting the results can take weeks or longer, so start the process of getting an evaluation early.  

How to prepare a child for a neuropsych test

1. Explain the purpose of the testing. Reassure the child that this isn't a test that they will pass or fail. Instead, the results help everyone understand how their brain works — what kinds of tasks are easy and what take more effort.
2. ‍Take care of logistics beforehand. Make sure that the child is well-rested, has had a good breakfast, and takes their prescribed medication.
3. ‍Bring medical and school records to the test. Psychologists usually ask ahead of time for medical reports, school records, other evaluations, Individualized Education Plans (IEPs) if available, and behavioral information. If the psychologist doesn’t have these yet, bring copies at the time of the testing.  

What a neuropsych test includes

Neuropsych testing can last from two hours to a full day, depending on the reason for testing and the child's age. Psychologists usually divide long evaluations into shorter sessions. The typical elements of a neuropsych include

• A brief interview with parents to understand the parents' goals for the evaluation. Attention, processing speed, and language exercises, such as circling every star on a paper full of designs, matching symbols to numbers, or naming pictures of everyday objects.
• Memory and learning activities, such as hearing a story and retelling it, copying designs, or drawing designs from memory.
• Executive function and problem-solving tests, such as puzzles, card-sorting, or mazes.
• Academic and visual-spatial skills problems, such as doing arithmetic or copying patterns and designs.
• Emotional and behavioral questionnaires completed by parents and child, if age-appropriate.  

During testing, the psychologist pays attention to how your child approaches the tasks — whether they act impulsively, work steadily, get frustrated, or come up with strategies on their own.  

How neuropsych testing results are used

To understand learning challenges: A neuropsych helps explain why learning may be difficult and why a person may have behavior challenges.

To support educators and parents: Results guide teachers in tailoring learning interventions and help parents find practical ways for their child to learn outside of school.  

To help doctors: Results can show whether seizures or medications are affecting thinking, and in some cases, help doctors learn more about where seizures begin in the brain.  

To track brain changes: Epilepsy can affect the brain over time. A neuropsych establishes a baseline — a starting point for comparison in the future.  

Genetic testing for epilepsy

Genetic testing can sometimes explain why someone has seizures and help doctors choose the best treatment. Doctors may recommend genetic testing if

• Seizures started early in life.
• The cause of epilepsy is unclear.
• There is a family history of epilepsy.
• The results could help doctors choose the most effective antiseizure medications.

What genes can tell doctors and patients

Scientists have identified hundreds of genes linked to epilepsy — nearly 1000 so far — and the list keeps growing as research advances. Mutations in these genes can

• Directly cause some types of epilepsy.
• Increase the risk of developing epilepsy.
• Affect brain development, learning, or movement.  

While epilepsy can run in families, sometimes a change in a gene happens on its own during pregnancy, instead of being inherited from a parent.  

Types of genetic tests

Doctors usually start with a single gene or a gene panel test because they are faster and cost less. More comprehensive tests, such as WES or WGS, are helpful in complex cases. But even if results don't give clear answers, the information can be saved and reanalyzed as scientists discover new epilepsy genes. Saving the test results means families don't have to repeat the test.

Important considerations include:

• Limits: Current gene panels include only about 400-500 known epilepsy-related genes. That means that a negative result doesn't rule out a genetic cause.  
• ‍Uncertain results: Sometimes tests find genetic changes whose role in epilepsy isn't fully understood today. A genetic counselor can help explain how to interpret these results.  

Questions to ask the doctor about genetic testing

• Which genetic tests are we doing, and why?
• Is the test covered by insurance?
• How long will it take to get results?
• How will the results affect treatment?

The ketogenic diet treatment for epilepsy

The ketogenic diet isn't just for losing weight. This diet was developed as a medical therapy for epilepsy more than a century ago but was largely forgotten until the parent of a child with uncontrolled seizures played a key role in bringing it back into practice. Currently, the ketogenic diet is used worldwide to treat epilepsy.  

When to consider the ketogenic diet

Doctors may recommend the ketogenic diet if

• Seizures don't improve with standard antiseizure medications
• Epilepsy begins in childhood and is hard to control
• Families and patients can commit to a strict, medically supervised diet

How the ketogenic diet works

Normally, the brain uses glucose from carbohydrates for energy. In the ketogenic diet, fat makes up 85-90 percent of the total calories and protein makes up about six to eight percent. When carbs are so limited, the body has to break down fat for energy instead, which produces chemical compounds called ketones. These ketones become the brain's fuel source. Switching from glucose to ketones as the brain's energy source can reduce or even stop seizures. Adults sometimes follow modified versions with lower fat ratios.

The ketogenic diet's comeback

In the 1990s, the ketogenic diet made a comeback after a Hollywood producer, Jim Abrahams, discovered the treatment while searching for options for his young son's uncontrollable seizures. Charlie's dramatic improvement on the diet drew national attention after his story became the subject of a movie. Abrahams went on to found The Charlie Foundation in 1994. The foundation raises awareness, trains doctors, and gives parents and patients tools to help them use the diet safely.

Challenges of the ketogenic diet

Doctors usually prescribe the diet only after antiseizure medications fail because

• Meals must follow extremely strict fat-to-carb ratios, with foods being weighed and measured. (Unlike other therapeutic diets described in the next section, eating out at restaurants is not possible.)
• Possible side effects include constipation, kidney stones, slowed growth, vitamin deficiencies, and changes in blood lipids.
• Families have to work closely with a doctor and a dietician, often starting the diet in the hospital for safety.

Multiple diets for epilepsy treatment  

• Classic ketogenic diet: the original restricted version
• ‍Modified Atkins Diet, Low Glycemic Index Diet, and the MCT oil diet: easier-to-follow options
• ‍Who it's for: children and adults with drug-resistant epilepsy, only under medical supervision
• ‍Beyond epilepsy: researchers are studying ketogenic diets for the treatment of cancer, Alzheimer's, and mood disorders.  

Epilepsy seizure safety tools

Seizures can happen without warning, which is why many people who have epilepsy — and their caregivers — turn to safety tools and devices for extra protection and peace of mind. These tools can help during or after a seizure, and while none are perfect, advances in technology are making some of them more reliable. Researchers are even working on ways to predict seizures minutes or even hours in advance.  

Wearable safety devices

Devices worn on the body can often detect seizures and alert caregivers. Such wearables are the most widely used seizure safety tools. They work by

• Monitoring movements common during seizures, such as shaking rhythmically.
• Detecting sudden increases in heart rate, increased sweating, or, in some devices, changes in breathing or oxygen saturation.
• Using algorithms to analyze that information for patterns that suggest the person is having a seizure.
• Sending alerts to caregivers via smartphones paired with the wearable device.

The most popular wearables are watches and wristbands. Other types, such as armbands, chest straps, headbands, small adhesive sensors, or smart clothing, are usually used for patient testing, research, or pilot programs.  

Today's wearables are best at detecting generalized tonic-clonic seizures. They sometimes trigger false alarms, such as during strenuous exercise or restless sleep. In the future, integrating artificial intelligence may help devices learn each person's unique seizure patterns and reduce the frequency of these mistakes.  

Nighttime seizure monitoring

Seizures during sleep can be particularly dangerous if they are prolonged because no one is there to witness them or use seizure rescue medication to stop them. In addition to wearables, other technologies include sensors placed under a mattress to detect shaking or muscle spasms and cameras in the bedroom that use motion detection to monitor for unusual movements. These tools can also give caregivers information about how often seizures occur, helping doctors adjust treatment as needed.

Trained service dogs

Seizure response dogs are trained to bark for help during or after a seizure, activate an alert system, such as by pressing a button, move the person into a safe position. Some are even trained to clear the person's airway by removing vomit.

Seizure alert dogs differ from response dogs in that they may be able to detect that a seizure is about to happen. They can do so by sensing subtle changes in the person's behavior, body language, or smell. Warning before a seizure gives the person time to move to a safe place or take rescue medication if prescribed. However, research so far suggests that seizure alert dogs aren't consistently reliable.  

Service dogs trained to help a person with epilepsy can range from $15,000 to $30,000 or more. Health insurance usually doesn't cover these costs, though some foundations may offer financial assistance.  

Devices for home and out and about

Fall-detection sensors — similar to the alert devices many older adults use — can call for help if someone collapses during a seizure. Smart-home devices connected to phones can also notify caregivers if a possible seizure is detected. For people who have frequent drop seizures, wearing a protective helmet can reduce head injuries. Other simple changes, such as padding sharp corners or using a shower chair, can help prevent injuries. Medical ID bracelets, necklaces, or smart tags can give first responders key details. These identification devices may include the diagnosis, medications, and emergency contacts.