After a Heartbreak, Talking with Kids about Difficult Subjects

Adapted from advice sent to Kids Crew parents.

As you may have heard, it was announced last weekend that Disney Channel star Cameron Boyce passed away. Cameron’s family released an updated statement saying his “tragic passing was due to a seizure as a result of an ongoing medical condition, and that condition was epilepsy.” Cameron was known for his roles in the Disney franchise “Descendants” and TV show “Jessie." We are saddened to hear that another young life has been taken by seizures.

Some families with kids who watched Cameron have reached out to us saying their children have questions. Some children are scared because they have epilepsy and some because a parent has epilepsy.

Below are some suggestions that may help you find the right way to talk about this difficult subject in your family.

• Be reassuring and calm.
• Start with simple answers. Providing more information than asked for can add to confusion and anxiety.
• Sample conversation starters can be:
  • News like we heard about Cameron can be scary. I am here if you want to talk about it. What questions do you have?
  • There are things we don’t know about Cameron. We may never know because he and his family may choose to keep some things private.
  • Each person with epilepsy is different and so are their risks for having seizures, getting hurt, or sometimes people die. Let’s talk about [your risks (if your child has epilepsy) / my risks (if you, the parent, has epilepsy)].
• If your child has epilepsy,
  • Let them know you, their other family members and friends, and their doctors and nurses are there to help them be safe.
  • Talk about the things they do to stay safer, like getting enough sleep and teaching a friend what to do when they have a seizure.
  • The biggest factor in seizure-related deaths is seizure control, so tell them that taking their anti-seizure medications the way the doctor tells them to is very important.
• If you, the parent, has epilepsy,
  • Talk with them about how you are working with your doctor to be safe.
  • Consider inviting them to help you stay safe, such as by understanding when you need a nap or helping you remember your medicine.
• Encourage your child to talk about how they are feeling with a friend or trusted adult.
• Teens have found it reassuring to know the risk of seizure-related death in children with uncomplicated epilepsy is similar to risks like motor vehicle accidents, suicide, homicide, etc. (Pediatrics, July 2013)
• Remind your child to take a break from social media, especially if the news is becoming overwhelming and upsetting.

Other Things You Can Do

• Have a frank, open discussion with your or your child’s healthcare team about actions to reduce and manage risks.
• While there are risks, they can be reduced by working towards the best seizure control possible and preventing “avoidable” seizures by taking anti-seizure medications as prescribed, getting enough sleep, avoiding seizure triggers, and working with your health care team. Adults should limit alcohol and illicit substances.
• If seizures remain poorly controlled despite treatment, talk with your or your child’s doctor about other treatment options, consult an epilepsy specialist (called an epileptologist), or seek an evaluation at an epilepsy center.
• Engage your family and friends to support your or your child’s seizure management plan and teach them seizure first aid (epilepsy.com/firstaid).

For more information about epilepsy and seizures, please visit epilepsy.com, reach out to your local Epilepsy Foundation (epilepsy.com/local), or call us at 800-332-1000.