Epilepsy and young people: What you need to know

Epilepsy has been in the news recently, raising concerns for parents and loved ones of patients who have the seizure disorder. We asked Atiya Khan, MD, PPG – Pediatric Neurology, to answer the most common questions related to the condition.

What causes epilepsy in young people?

Epilepsy develops due to an abnormality in the electrical wiring of the brain. Epilepsy can be caused by many different things:

  • It can be hereditary
  • Some children are born with a structural change in their brain that makes them prone to seizures
  • Head injuries
  • Any disorder that may cause brain damage or deprive the brain of oxygen
  • Poisoning, such as exposure to carbon monoxide or lead
  • Exposure/overdose to street or prescription drugs

But unfortunately, almost half of all seizures have no known cause.

What are the risks associated with the condition?

Minimizing risk of injury for a person with epilepsy is of utmost importance. A person with epilepsy can have a seizure at any time, so they have to exercise caution when doing activities like driving. They should know the restrictions and requirements for their state when it comes to driving. Generally, a state will require a person to be seizure-free for a certain amount of time before allowing them to legally drive. Every state limits or restricts a person with epilepsy in regards to driving, so know your state’s rules!

Water safety is also of concern. A person with epilepsy should consider using a life vest, and take showers instead of baths. A person with epilepsy should never be in the water alone as a seizure in the water could lead to death.

These individuals should also consider other safety factors, such as home safety, fire safety, avoiding heights, and consider the safety versus risk of power tool or machinery use. A person with epilepsy may also consider pursuing lower risk recreation over high risk situations that may lead to harm or injury. When in doubt, ask your healthcare provider if that activity is safe for you.

Is death common among young people with epilepsy?

Most people with epilepsy will lead a full and normal life. There is a condition of epilepsy that can cause death called Sudden Unexpected Death of someone with Epilepsy (SUDEP). No other cause of death is found in these cases on autopsy. The cause of SUDEP is unclear, but some research leads us to believe it may be caused by an irregular heart rhythm or breathing issues following a seizure that leads to death.

Each year 1 in 1,000 people with epilepsy die from SUDEP. Uncontrolled epilepsy puts a person at a much higher risk of SUDEP. Risk factors for SUDEP include:

  • Frequent seizures
  • Not taking medications regularly and as prescribed
  • Stopping or changing medications suddenly
  • Young age (20-40 years old)
  • Intellectual disability
  • Being on multiple seizure medications

The risk of SUDEP for children is much lower than that of adults. So how can you avoid it? Get control of your seizures. Take medications as directed and see and communicate with your healthcare team regularly. Take care of yourself – eat well, sleep well, exercise, lessen your stress, avoid alcohol and recreational drugs. Know your triggers such as fatigue, illness, stress, and missing medications and avoid them to the best of your ability.

What should parents/patients watch for in relation to epilepsy?

The most important thing for a loved one to provide a person with epilepsy is safety: STAY-SAFE-SIDE.

STAY with the person and time their seizure.

Keep the person SAFE. Remove anything potentially harmful in the environment away from the person having the seizure.

Turn the person onto their SIDE if they are not aware or awake. Do not restrain the person, do not stick anything in their mouth.

STAY with the person until they are awake and alert after the seizure.

Call 911 if a seizure:

  • Lasts 5 minutes or more
  • The patient is having breathing difficulty
  • Repeated seizures
  • The person does not return to their normal state
  • The person was in water during the seizure
  • The person appears ill or injured
  • The person is pregnant
  • They request further medical attention
Is there anything new in regard to treatment?

Ongoing research is continually providing for better ways to quickly and correctly diagnose epilepsy in patients. Testing is improving and enabling more precise ways to diagnosis epilepsy. There are now more than 20 different epilepsy medications. Recently, there have been promising results linked to the use of CBD oil monitored by a physician.

In addition to medications for treatment, there are a variety of surgical interventions – implantable devices, vagus nerve stimulators and gene identification tests – that have all led to improved treatment and identification of epilepsy. Advances in research and treatment of epilepsy continues to improve, which means better diagnoses, control and care of patients with epilepsy leading them to live normal, full, healthy lives.

It’s important for people to remember that epilepsy is not contagious or caused by mental illness. While it cannot currently be cured, it can very successfully be treated in most cases. Anyone can be affected by epilepsy. It is not rare. But those impacted by the condition can lead a normal, happy life.

For more information, visit the Epilepsy Foundation.

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