Our daughter Jane died from SUDEP & possibly from ours and her ignorance. Nearly half of all SUDEP deaths are avoidable. Stay Alive - Read On.

Tuesday, 20 March 2012

SUDEP & Risk of death

Okay let me just go for it.  Risk, risk, risk.  You tell a smoker, "you are putting yourself at risk of cancer", and what happens?  They tend to light another cigarette a short while later.  They may not talk to you anymore.  They justify their reaction internally with, "we all have to die sometime."  You tell them again that death may be painful and they may react, "blah, blah, blah." The science on smoking is in, there are clear associations of death with smoking - and yet many people continue to smoke, and many new people adopt the habit.


My point is that people either ignore or perhaps do not even understand risk.  And with SUDEP the science is not even "in", the science has hardly just begun.

Yes, we are told that 3 people die each day in the UK from SUDEP.  What does that mean?  What would it have meant to me as a father had someone said Jane was "at risk"?  Would I have said to myself, "blimey, Jane must get her dosage doubled, or something."  I don't know. I will never know.

But right now, I would like to think I would have done something that might have made a difference.

The first thing would be to measure that risk.  So, with ready access to the Internet I would have visited many web pages on the subject and probably recommended Jane and other member of our immediate family read them.

And so, one page I might have visited would have been the UK government's patient.co.uk page on SUDEP.  And if I had then that page might have been the end of my searches.  It talked about those people at "high risk", and Jane did not tick the box on any of the criteria.  Indeed, if anything Jane was "low risk."

So where did we go wrong?  The first point is that whether it is high or low it is a risk.  If you have epilepsy then there is most definitely a risk of dying in SUDEP circumstances.

Our next stage would have been to go to Jane's doctor.  And Jane did get her medication reviewed.  Indeed before her death we had encouraged her to get another review, which sadly did not happen.

In my mind's eye though I feel yet another doctor review would not have solved the problem.  Remember at the time of Jane's death we were totally ignorant of SUDEP.

In hindsight a referral to the Epilepsy Society as an outpatient could have made a difference.   As an outpatient she might have stayed in for a couple of days to review her medication - under supervision.  The supervision includes video monitoring and all manner of health measurements, including MRI scans.

That might have made a difference.  The first reason is that any risk of SUDEP would become very accurate for Jane as an individual rather than a generalised statistic.  The second reason is that as a result the medication she would have ended up with would, most likely, be so much more beneficial in preventing siezures.

Yes, Jane might still have died from SUDEP.  And no, we would not have had Jane change her lifestyle one bit.

And yes, we would have looked at other measures to protect against SUDEP.  But if current science teaches us anything effective medication is the best prevention against seizure for most people with epilepsy.

That is then the first line of protection against SUDEP - whatever the risk.

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