Learn More About SUDEP

Those most at risk

24 February 2009
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Those at most risk from SUDEP are children and people with epilepsy who have other neurological conditions as well as epilepsy, those who are experiencing tonic-clonic seizures, young adults particularly males, people who have seizures during sleep and those people who are experiencing either increasing numbers of anti-epileptic drugs taken at the same time or frequent changes of anti-epileptic drugs. Most recent studies indicate that the lack of seizure control is the greatest risk factor.

The SUDEP risk for children with epilepsy whose seizures are well controlled is small, especially where there are no other complications. However, some children have died of SUDEP even during the child's earliest seizures. Most of the lifestyle advice above will not be applicable to children, most of whom will have excellent habits. The one area where parents may wish to intervene is in the area of sleeping. This can be done by some form of monitoring either by sleep alarms or periodic checking. It may be possible for the child to be in the same room as his/her parent/s or for an adult to share his/her bed. However, this approach has to taken in tandem with concerns for the child's independence, especially as s/he gets older.

Taking the steps outlined above can significantly reduce SUDEP risk, particularly if Brainwave members insist on their right of access to specialists and that action be taken to eliminate seizures. However, the other urgent action that needs to be taken is for major research into the causes of SUDEP. Brainwave has been campaigning to have such research carried out in Ireland and we urge you to support this in any way you can.

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