The death of Disney Channel star Cameron Boyce brought attention to epilepsy, seizures and a specific risk for people with epilepsy known as SUDEP – Sudden Unexplained Death in Epilepsy. Madison Berl, Ph.D., a neuropsychologist at Children’s National Hospital who specializes in epilepsy, answers a few questions on SUDEP and explains the importance of seizure management to reduce your child’s risk for SUDEP and other epilepsy complications.

What is SUDEP?

SUDEP, or Sudden Unexpected Death in Epilepsy, is when someone with epilepsy dies suddenly and unexpectedly for an unknown reason.

How frequently does it occur?

Numbers are changing as we learn more about SUDEP but right now we know about 1 in 1,000 children die from SUDEP each year.

What are the causes?

We don’t know what causes SUDEP. Some researchers think it is possibly linked to heart rhythms, breathing difficulties or other causes. We are still investigating direct causes.

What we do know is that there are factors that increase the risk of SUDEP. The main risk factor is uncontrolled seizures. In particular, uncontrolled generalized tonic-clonic seizures, known as GTCs, are a known risk for SUDEP. GTCs are convulsions that include stiffening and jerking and loss of consciousness – formerly known as grand mal seizures.

What can I do to reduce my child’s risk of SUDEP?

The good news is there are things a family and child can do to reduce the risk of SUDEP.

• The most important thing is for a child to take their medications exactly as their doctor has prescribed. If you are still having uncontrolled seizures when taking your medication, it is important to go back to your neurologist to discuss. If you aren’t already seeing an epilepsy specialist, also known as an epileptologist, it may be time to consider seeing one.
• Know your triggers: another way to reduce the risk of SUDEP is to know what triggers your child’s seizures. Triggers can include having seizures at night, being sleep deprived, stress, being sick and having a fever, drinking alcohol, taking drugs and for women, during a menstrual cycle. It’s really important to know the individual triggers for your child and help manage them as best as you can.
• You may want to increase monitoring of your child, especially when they are at increased risk. For those children still having seizures during the night, it may be helpful having a monitor on while the child is sleeping.

What’s really hard is most parents want to be with their child all the time in fear of them having a seizure and it can be really tough to balance increased monitoring with living your life. It’s important to know that SUDEP exists and to reduce your child’s triggers and talk with your doctor about what steps are appropriate, when necessary. At the same time, know that for children with uncomplicated epilepsy, the risk of dying from SUDEP is the same as any child dying from an accident or some other cause of death.

To learn more about SUDEP and for additional resources, please visit our website.