SUDEP Information for Parents of Children with Epilepsy
Watching a child deal with the day-to-day challenges associated with epilepsy can be difficult for any parent. Though research has shown that Sudden Unexpected Death in Epilepsy (SUDEP) is uncommon among younger aged children, it is still an important concern for some children. SUDEP refers to such deaths in people with epilepsy that are not caused by injury, drowning, or other known causes. Often SUDEP occurs with evidence of an associated seizure.1
The likelihood of SUDEP in children depends on how well their epilepsy is controlled. To reduce the risk of SUDEP, seizure control is essential; however, along with Antiepileptic Drugs (AEDs), being aware of other risk factors are also important.2
Children with uncontrolled epilepsy or frequent seizures are at the highest risk for SUDEP.
In addition to the risk factors stated earlier, other factors may include the following:
- Early-onset of epilepsy.2
- Developmental disabilities.2
If your child has uncontrolled epilepsy, ask their doctor to discuss their risk of SUDEP with you. The first and most important step to reduce their risk of SUDEP is to make sure they regularly take their seizure medication as prescribed. If they are taking seizure medication and still have seizures, discuss options for adjusting the medication with their doctor. If seizures continue, consider consulting an epilepsy specialist, if your child is not already seeing a specialist.
Other possible steps to reduce the risk of SUDEP include the following:
- Avoid seizure triggers, if these are known.4 Read more information about seizure triggers.
- Avoid sleep deprivation.
If you have uncontrolled epilepsy, talk with your doctor about other possible ways to reduce your risk of SUDEP. If necessary, other ways to reduce risk might include having adults in the household trained in first aid for epilepsy seizures.
When you decide to talk with your child’s doctor about SUDEP, possible questions to ask include the following:
- What risk does my child have for SUDEP?
- If my child’s risk for SUDEP is increased, what can I do to reduce their risk?
- What should I do if my child forgets to take their anti-epileptic drug (AED)?
- What steps should I take if it is decided to change my child’s seizure medication?
- What medications provide the best seizure control for my child?
- Are there any specific activities my child should avoid?
- What instructions should I give family and friends if my child has a seizure?
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Please visit the following websites for more information and resources related to SUDEP:
- Epilepsy Foundation [PDF - 205KB]
- Citizens United for Research in Epilepsy (CURE)
- SUDEP Aware
- Epilepsy Bereaved
- Patient UK (United Kingdom)
- Epilepsy Action (United Kingdom)
- Support Groups
- Power Point Presentation
- SUDEP Brochures
- SUDEP Information for a Person Living with Epilepsy
- SUDEP Information for Parents of Children with Epilepsy
- SUDEP Information for Spouses or Partners of People with Epilepsy
- Devinsky O. Sudden unexpected death in epilepsy. New Engl J Med. 2011;365:1801-11.
- Meyer S, Shamdeen MG, Gottschling S, Strittmatter M, Gortner L. Sudden unexpected death in epilepsy in children. J Pediatrics and Child Health. 2011; 47(6):326-31.
- Scorza FA, Arida RM, Terra VC, Cavalheiro EA. What can be done to reduce the risk of SUDEP? Epilepsy Behav. 2010;18(3):137-8.
- Tomson T, Nashef L, Ryvlin P. Sudden unexpected death in epilepsy: current knowledge and future directions. Lancet Neurol. 2008;7(11):1021-31.
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