Contributor: Elaine Wyllie, MD
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Most children who experience epilepsy grow up to live long and fruitful lives. But every parent naturally wonders whether their beloved child with seizures could pass away prematurely.
A quick internet search serves up plenty of information about sudden unexpected death in epilepsy (SUDEP). While the risk of SUDEP is lower in children than adults, it remains one of the greatest concerns for any parent. What can we do together to minimize this risk and manage the concern?
Facing the issue
Here are the facts. Healthy children with well-controlled seizures and no other serious medical conditions have no greater risk of dying within a given year than anyone else. But for children with more severe epilepsy or with other medical or psychological challenges, the risk, although still low, is naturally somewhat increased – and this is an issue that we must face together.
Parents can take several steps to prevent a seizure-related death. These include:
- Working closely with an epilepsy specialist to maintain the best possible seizure control
- Ensuring that the child receives the daily medication as prescribed
- Practicing appropriate first aid for grand mal seizures
- Using rescue medication for prolonged seizures if needed
- Following simple seizure precautions such as encouraging showers instead of baths and supervising the child closely during swimming. Supervising the child at night, while presenting some special challenges, also may be helpful.
Although there are no guarantees in life, parents who follow these basic instructions may rest assured that they are doing everything possible to reduce the risk of SUDEP.
While these seizure precautions are important, you may be surprised to learn that less than 25 percent of unexpected deaths in children with epilepsy are directly seizure-related. What are the other risks, and how can parents prevent them?
For young children with additional serious medical conditions such as cardiac, respiratory or other problems, the risk for unexpected death actually is related more to these other medical issues than to epilepsy. Lowering the risk requires close collaboration with a strong team of appropriate medical specialists.
For older, otherwise healthy children and teens, seizure-related drownings and injuries are serious concerns. As teens naturally strive for greater independence, protecting them from seizure-related injuries may become a challenge.
If an older child’s seizures cannot be completely controlled, then restrictions on driving and other activities can understandably lead to significant anger, frustration and feelings of hopelessness.
If the tension between protection and independence becomes too stressful, then it is important to discuss this with your child’s epilepsy specialist. Sometimes it takes an informed third party, such as the doctor, to enlist the child’s active participation in making safe lifestyle choices that will prevent an unexpected death.
And finally, teen suicide is an issue that we must face. People of all ages experiencing epilepsy are at increased risk for mental health issues, especially depression – and research has shown that about 20 percent of people with epilepsy attempt suicide at some point in life.
Break the silence
Even children are at risk. In one study of children ages 5 to 16 with epilepsy, more than 35 percent had a suicide plan.
Is it possible that silently your child is thinking about this? And if so, how often? Step one is to simply ask, “Do you ever think about harming yourself? Is it just a passing thought, or do you actually have a plan?”
Hopefully, your child will open up about this, so that if the answers raise concern, you can obtain help from a pediatric psychiatrist to alleviate the emotional pain and prevent a tragedy. Issues may include bullying in school, frustration at a lack of independence, fears about the future, social embarrassment and so much more; all of these issues must be addressed openly, effectively and with compassion.
Mental health screenings are important
At Cleveland Clinic, doctors asked 400 children older than age 6 with epilepsy to complete a special questionnaire. They discovered that more than 25 percent of the children — half boys and half girls — screened positive for some element of suicide risk.
Thirteen of the children, or 3 percent, appeared in imminent danger because of active suicidal thoughts or attempts. These 13 children were immediately referred to the emergency department, where health care providers intervened and suicide was prevented. This study highlights the importance of mental health screening by doctors in the epilepsy clinic, but even more important is the role of parent-child communication.
As you can see, there are many important actions that families can take to prevent epilepsy-related deaths. The first and most important step is opening the conversation.
This post is based on one of a series of articles produced by U.S. News & World Report in association with the medical experts at Cleveland Clinic.