Friday, 22 July 2016

What is SUDEP?

Rosie Logan Edwards

SUDEP is when someone who has Epilepsy dies during or as a result of an epileptic seizure.
It is more vulnerable in people who suffer from nighttime ‘sleep seizures’, ie having a seizure whilst already being asleep or when in recovery from a previous seizure and is still in the unconscious ‘seizure sleep’ stage.
I had Epilepsy as a child and my son was also diagnosed with it age 4.
Seizure sleep is the term I use to describe that period of time when after having a Grand Mal (Tonic Clonic) seizure, when the period of the stiffness and the jerks have passed and the individual is unconscious and very very still, like being asleep but not a normal regulated sleep, there is no pattern to their breathing and they are abnormally still. In fact it is near impossible to hear him breathing when in this seizure sleep, and I would always look for signs of the tummy rising and falling to know that he was still breathing.
When this happened to my son I would constantly watch him, studying his entire body looking for more possible jerks or twitches, making sure I didn’t miss any sign of anything, he would be so still and so quiet but I would continue to talk to him and tell him that ‘everything was ok’ and that he can ‘come back now sweetheart’, ‘everything is alright’, gently reassuring him, weather he could hear me or not I do not know, but in case he could then I wanted to make sure he was reassured.

As best as I could I would time both the seizure and the ‘seizure sleep’ that followed.
I could always identify when he passed from the seizure sleep into standard regulated sleep, he would take a slow, deep inhalation of breath and he would start to move again and do the usual movements of settling down into sleep again, his breathing would then be more recognisable as regular standard breathing during sleep. The ‘seizure sleep’ lasts approx 10 mins, but this can vary in different people.
Until the seizure had fully passed I would not leave my sons side, not for anything, and even when he when he was fully awake again I would still make sure that someone was with him if I left the room. They must never ever be left alone as another seizure could strike at any time.

I could still see the affects of the seizure for up to 10 days after the seizure had passed, it would always affect his balance, coordination and memory, always those three things, and even when two or all of those things are not quite right for him I am aware that he may have had a seizure without me realising it, this prompts me to provide constant monitoring and checking up on him, which at age 12 he sometimes gets fed up, but I cannot help but do it, I would rather him be a bit fed up with me than him be in danger from a seizure that im not aware of, as I am well aware of the dangers that can so easily happen if he was not supervised or had appropriate help.

My son would also have 2 seizures close together within 12 hours, always 2. This gave me rise to believe that his seizures were habitual after his then consultant telling me they weren’t.

Epilepsy IS life threatening and it kills more people than we realise.

I can remember when I was at high school, a girl’s mum had died from having a seizure, the poor lady didn’t recover from a particularly bad seizure, and since then I have known of others, both in my community, people who have told me their knowledge of it happening and as well in the celebrity world. Regardless of what kind of Epilepsy you have or how the seizure was induced, the danger is that anyone who has a seizure weather they have had Epilepsy diagnosed or not can die from a seizure. It is that real.

Epilepsy can also run in families (which is not the same as being hereditary, so I've been told).

I had Epilepsy when I was a young child, it was totally uncontrolled and on one particular bad day my mum remembers that I had about 15 Grand Mals (Tonic Clonic) seizures and she was convinced that I was dying. She just didn’t think that I would come out of it.
I am always astounded when I see an Epilepsy awareness video or piece of information and not once does is it mentioned that it’s a life threatening condition, or the mention of SUDEP.
This is a very real danger and people need to be more aware if it.

On 3 separate occasions all within 8-10 days ,I woke to find my son blue, cold, and not breathing and I had to revive him. This is a very scary situation to be suddenly faced with, and if I wasn’t aware of SUDEP or what to do, then I wouldn’t have known how to help him. Everyone HAS to be made aware, and everyone as standard should take a basic first aid course. This is crucial and should be offered to all parents and carers of someone with Epilepsy. Incidentally….ever since the last time I found my son like this, he has not been able to sleep through the night and he is now nocturnal, he simply cannot sleep and doesn’t get tired like neurotypical children. We fully accept and respect this and we as a family have adjusted to his needs so that he is always supported and fully reassured. But as a result of that last ‘sleep seizure’ I truly believe that whatever happened to him, it affect the sleep regulating area of his brain. He has never been a great sleeper anyway, but the difference between before and after this last ‘sleep seizure’ was so dramatic that I truly believe this is what happened.

My grandfather was a doctor and I was once told that there are two main groups of how one has/acquires Epilepsy, 1, you are born with it, or 2, you have acquired it ie as a result of something else, like an injury, accident, as a symptom of something else ie a tumour, or because of taking strong substances of any kind ie other medication, recreational drugs etc.
There is more chance of growing out of childhood Epilepsy than there is if one develops it during adolescence or when fully grown.

Both me and my son were born with Epilepsy, one cannot compare the two as it is always unique to that individual person.

There needs to be more awareness on SUDEP.
Professionals I have encountered over the years right up to recently, as well as family members, simply haven't heard of SUDEP.

Now I carry spare copies of information that I have printed off from the internet so I can educate people if ever it comes up and when they need to know, and also to protect my son (this is vital) as if he was aware that Epilepsy and in particular SUDEP is life threatening then he would just freak out, it would have a detrimental effect on him and he would be so anxious and stressed that it would likely cause a seizure, so handing over a leaflet or a piece of information is a lot easier than having to try and explain to someone what SUDEP is while whispering or using code words, which often gives totally wrong information and it would severely affect my sons confidence and it would really emotionally upset him if he heard me whispering about him, so handing over basic information is calm, quick and saves stress and time.

These are some good links, but really, there is lots of info on the web now about SUDEP.

A must read as closely linked with Epilepsy

Any questions at all please do not hesitate to contact me.

Rosie Logan Edwards (note:- if you aren't a member of our Face Book Group then send an email to with your contact details and we'll pass the message on so Rosie can respond to your queries directly)
Useful for appointments, trips and lots more besides. This is a link to the template & guide to creating a specialist Epilepsy passport developed by the RPCH

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