It makes you cry

Today's Broadcasting House on BBC Radio 4 had an article on Sudden Death in Childhood which made me cry.  Sudden death of a child is very different to other deaths.  I do not want to trivialise deaths of other people with whom one lives, but it is different.  If it is a sudden unexpected death then the heartache is all the worse.

The Balloons go up on SUDEP

I said in an earlier post that the moment that got to me was the balloon launch.  Fortunately friends were able to capture that moment and I am so pleased to be able to share some of that moment with you now.  Actually I have loaded this collage as a video into Youtube, so you can check it out directly there, or here.

(I chose to make this collage silent.  Photos courtesy of Charlie, our official photographer.)

Seizing Cinderella in Suffolk

If you live in London, or more precisely Halesworth, Suffolk on Sunday May 13th then I am looking for someone to report on "Seizing Cinderella", which is a play about Epilepsy, and possibly about SUDEP.  The cast includes people from The Best Marigold Hotel, Torchwood and Downton Abbey.

To read more visit Seizing Cinderella at the Hightide Theatre.  This is a free event, so all it costs is your time!

This play is supported by Ross Sheridan, whose Karen daughter died in 2008.  For more details on Karen click her link on the left panel.

A bigger milestone

I consider what follows a major success.   You see I am an adult, an ageing adult and the main group of people who are at risk of SUDEP are much younger than me.  Coming out of their teen years they are just becoming adults and no matter how much I love or loath it they think differently to me.  Yes, I may consider myself as Internet savvy and as such I think I was a reasonably early adopter of technologies like Facebook.  But that will never help me get my youth back.  And in getting the message out to young adults with epilepsy about the risks around SUDEP is not easy for me, or anyone of a certain age.

Can Ultrasound help recover someone from SUDEP

When I went to the SUDEP conference last week one of the debates between families was around "would I want to know about SUDEP since there is nothing you can do about it."  One thing I want to achieve in writing this blog is to bring to your attention techniques that might help avoid SUDEP.

Yours truly on the box

Whether it is looking at yourself in a picture or watching yourself on video, it is hardly ever a satisfying experience, so excuse me it I don't watch this myself.  Nevertheless because this blog is not about me but SUDEP awareness then we have pleasure in adding one of the clips played out on BBC South TV yesterday.

Autism linked to SUDEP

I have just come across a report that links Autism to Sudep.  Now I have some aspects of the autism spectrum including possible Aspergers and ADD/ADHD and I always suspected Jane inherited some of this from me.

Like so many things with Epilepsy research is sparse and does not clearly indicate the heightened level of risk.

Back in 2005 Neurologists flaunted NICE guidelines

In the current (2012, last updated 2004) NICE Clinical Guidance for Epilepsy is a section on SUDEP.  It states:

Information on SUDEP should be included in literature on epilepsy to show why preventing seizures is important. Tailored information on the person's relative risk of SUDEP should be part of the counselling checklist for children, young people and adults with epilepsy and their families and/or carers.

Looks like SUDEP to me

I have just added another person to our hall of fame.  This is a report of the death of Kim Cinderby, who died after drowning in a dog bowl.  The hallmark of SUDEP exists quite clearly to my mind.  His was not taking his medication effectively.  Bear in mind one of the outcomes of an autopsy is to confirm whether medication for epilepsy was being taken.  AEDs (Anti-Epileptic Drugs) build up strength in ones system and so if he had had sufficient drugs at the time of death to protect against seizure then the autopsy should have revealed that.

His death was put down to natural causes, and any death after a seizure which has not exact determination of cause of death in my book - its SUDEP.

Related articles

• Patching a hole that life fell through (valleyroadrambler.wordpress.com)

Epilepsy society updates its stance on SUDEP

To be very much welcomed the Epilepsy Society has updated its stance on SUDEP.  Not only does it have a very clear, no fuss, statement on what SUDEP is but it begins to outline the kind of things that can practically be done to help assuage the risks.  Read more here.

Prisoners At Added Risk of SUDEP

If this report of a prisoner in Addiewell Prison, Scotland is anything to go by then anyone with epilepsy is, whilst in prison at greater risk of death - almost by definition.  Not only that the probability of the incident being classified as SUDEP is probably a lot less.  And if that is the case for those epilepsy in the UK, where SUDEP is now being widely reported accurately (or so we hope), then in other countries, my guess is the situation is far worse.

Could this possibly be an undocumented SUDEP death?

I spend some time trawling the web for yet another person who died in SUDEP circumstances.  This is not as straightforward as it may seem.  Here in the UK nowadays coroners generally clearly define deaths as SUDEP when appropriate.  That is not the case in other countries.  Indeed in many countries epilepsy itself is still carries considerable social stigma, and thus talking getting a SUDEP verdict through an autopsy could be a challenge.

Not a SUDEP death, but the grief is all too apparent

I spend some time scouring the web for people who deserve to be remembered to at to the list on the left.  I try to stick to a criteria such that a web page publicly exists describing that person and that it must be clearly a SUDEP death.  In on those searches I came across this blog by Darla Neate and it is all too apparent that the grief one feels when losing someone very close is so very painful and all-consuming.

Darla, there is nothing one can say.  Just because your husband Jason did not die of SUDEP does not lessen the grief.  Thank you for writing your blog.

Are some AEDs linked to SUDEP?

There has been some concern that some AEDs (Anti-Epileptic Drugs) may actually contribute to the risk of SUDEP.  One drug that has been in focus is Lamotragine, and indeed our daughter took that drug so we have a very personal interest in this subject.

A report in the March 2012 issue of Pacing and Clinical Electrophysiology has just come out reporting there is no issue with drugs that have been around for many years, however that it is newer drugs that are in focus.  Of especial interest is when patients are taking more than one drug in combination.  Apparently taking 3 or more drugs increases the risk of SUDEP by a factor of 8!

Related articles

• Are heart abnormalities linked to SUDEP? (forjane.co.uk)

Do these epilepsy mortality statistics look right to you?

I am always hoping the number of deaths in Epilepsy, especially those to do with SUDEP are grossly over-reported.  Here in the UK we talk of three deaths per day or around 500 per year, and that's just SUDEP.

So how can the website NationMaster claim that UK deaths from epilepsy - in total mind you - for the year 2004 was only 128.  Don't believe me?  Visit this link to see how ridiculous their statistics are.  Oh and they claim their authority is the World Health Organisation, no less.  Sounds to me like something bonkers is going on.

Are heart abnormalities linked to SUDEP?

Going back to 2010, this study of mice linked possible gene defects to a predisopition with epilepsy, and if I understand it correctly, "potassium flows".  Well, I do not pretend to be  scientist, but fortunately for those with epilepsy the Dana Foundation focuses on everything cerebral.  The subject then pertains to SUDEP because of disruption of the heart.  And, as we know, when SUDEP occurs often it is because of heart failure.  Read more at New Clues to Causes of Epileptic ‘Sudden Death’ Syndrome - Dana Foundation

My defintion of SUDEP

We are very lucky in that across the web are lots of very good definitions of SUDEP.  However I feel there is something missing.  So I have added our own definiton of SUDEP.  Not only does it tell you what it is, it tells you what it is not.

Read more here.

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.

Hard Choices? Expletive deleted

When is the right moment to tell someone the might die from SUDEP?  Our Jane, like many people living with epilepsy was never told.  We, as parents were never told.  If you read the stories of parents, siblings, grandparents, frields and whoever, then historically no-one was told.

Not telling was, and where it still exists a conspiracy of silence that will condemn people to death where knowledge and awareness MAY have avoided such a death.  Silence is no longer an option.

Getting SUDEP into perspective

Whilst browsing the web I came across the MedicineNet definition of SUDEP.  Not a bad article and it does make some useful points.

1. Any epileptic fit carries a risk of death. Perhaps a small risk but one nevertheless, and of course everyone's risk is different.
2. People with Epilepsy should be concerned about SUDEP. No-one should panic about SUDEP.  The risk is small, but it is there.
3. When did you last have a check-up? When having a review make sure you get to know what kind of fit your have.  Not all fits are the same. Knowing that your fits can inform you a lot about your risk of SUDEP.  Video monitoring of your fits is a major tool to help determing your types of fit.
4. Make sure you take your meds reliably and regularly.  It is no good taking Anti-Epileptic Drigs "as needed".  Effective protection is only built up by taking them daily as prescribed.  Nothing less will do.