The Royal Children’s Hospital Melbourne has an excellent fact sheet on Epilepsy which has recently been updated to include information and warnings about sudden unexpected death in epilepsy (SUDEP).
The fact sheet reads:
Occasionally, seizures can be prolonged or complicated by serious breathing difficulties or aspiration (breathing vomit or other fluids into the lungs). Rarely, children can die unexpectedly from a seizure during sleep. This is called SUDEP, or sudden unexpected death in epilepsy. SUDEP is rare in most forms of epilepsy that affect children, especially if the child is taking regular antiepileptic medication and their seizures are controlled. There are some types of seizures and some associated neurological conditions where the risk is greater.
The update and inclusion of information on SUDEP follows a request from a Melbourne mother who tragically lost her seven year-old son to SUDEP in 2013.
Mrs Shields wrote to the Department of Health and Human Services. She asked it be made mandatory for parents to be given information regarding SUDEP when children presented with seizures.
The department agreed to make changes to The Royal Children’s Hospital factsheets on epilepsy and have included information about SUDEP and the use of monitoring devices, which alerts parents when their children are having a seizure.
Mrs Shields said having this information now widely available would save lives.
Mrs Shields’ initiative and the response from the RCH in updating the fact sheet is important in helping other parents whose children have epilepsy, and helps to raise awareness of SUDEP, which is something the community needs to be better informed about. Thank you Katherine Shields for allowing your son’s life and his tragic passing to be motivation to raise awareness about SUDEP. By sharing your personal tragedy you have contributed to helping to save the lives of other children who are at risk of SUDEP.