SUDEP

[talkhealth]

We have received a question via email from Julie who would like to ask:

"I'm hoping that you can help. My son was diagnosed with epilepsy in june last year. He is now three years and 5 months old. I'm petrified of SUDEP. What are his chances of this happening to him and is there anything that I could do to help prevent it?"

[Karen Osland]

Hi Julie,

I would always recommend that you speak to the team who are treating your son's condition as they
will have access to his medical history and will know more about his epilepsy and how it presents.
There are many ways to reduce risk, but the main thing is to talk through your options with the
medical team, I'm sure they will be very helpful. Understanding the treatment plan and as much about
his condition as you can will help you to feel a little more in control. If you would like to ring SUDEP Action
please do, or the other epilepsy charities also have great helplines with trained staff.

Take care
Karen

[Andrew Kelso]

Dear Julie

SUDEP is important because it can be preventable. It is also extremely rare. The exact chances of it affecting your son are small to very small, and are dependant on lots of factors, such as his type of epilepsy, how often he has seizures, what types of seizure he has etc. The most important thing you can do to reduce his risk is to make sure he gets his prescribed epilepsy medications regularly.

Please talk to your paediatrician/GP/epilepsy nurse about this. In most cases, people's worry is far in excess of the actual risk, but you're his mum - that's completely natural.

Good luck, and best wishes

Andrew

[Dan Hindley]

Hello Julie
SUDEP does happen but it is rare in young children. I have looked after over 500 children with epilepsy over the last 20 years and have had one child who died of SUDEP. The medical literature about SUDEP in childhood is patchy and contradictory. In general SUDEP seems to be more likely (but still very unusual) in children with difficult epilepsy and other neurodevelopmental problems. It seems sensible that treating the epilepsy as well as we can will reduce these low risks still further.
I don't know your son's history - I am sorry you are so worried; please speak to your paediatrician and your epilepsy specialist nurse who should be able to give you advice tailored to his situation.
Dan