|My Badge of Honour from Blenheim Triathlon|
Our daughter died from Epilepsy. Otherwise she was very very healthy - looked after herself. Possibly a year before her death she had been seizure free for a year before that. I know because I discussed the notion of her being able to drive again! We would argue that although her seizures were classed as tonic-clonic she was a mild epileptic. Her drug regime supported that diagnosis, since she was on the mildest level of drug usage. And we know she took her drugs reliably & had a good supply.
So believe me when I say Jane's death was SUDDEN and UNEXPECTED, I really mean that will all my heart. (U normally is interpreted as Unexpected.) So what went wrong?
To answer that question we have to start back at what Epilepsy is. Epilepsy is not a disease: it is an episodic and random neurological condition.
People have Epilepsy otherwise they lead very normal lives. The most common experience of people understanding an Epileptic seizure is that the body convulses, the person falls to the ground after seconds or perhaps a minute or two. Then the body goes relatively still. The normal recovery procedure is to ensure the person can breathe easily and generally is in a safe position recumbent on the floor where they fell, probably lying on one side. After a further few minutes the person recovers, is generally woozy to begin with but then recovers and after a time can resume normal life as if nothing much had every happened.
(If a person does not come out of the seizure or recover after 5 minutes then it is time to call emergency services.)
The other major feature of Epilepsy is its random episodic nature. Anyone with epilepsy can have a seizure at any moment, though generally there are patterns. And any seizure can potentially cause a death in SUDEP circumstances. Most SUDEP instances are considered to happen whilst sleeping, so there is one pattern. (But given the lack of hard research to date, it is not surprising to me that our daughter died in whilst showering.)
The U in SUDEP also often stands for Unnecessary, and about half of all SUDEP deaths are classed as being avoidable. So a great question is how can one be avoided. Well as I started to say, our daughter was largely seizure free. If she had had more than 100 tonic-clonic seizures in her entire life I would be very surprised, and by comparison I have read of some people who have more than that in just one day!
The best advice to avoid SUDEP is to avoid seizures. To do that most people take AEDs, anti-epileptic drugs. It is good to understand the nature of these drugs. To do that I want to cast you back to the moment of first diagnosis of Epilepsy. When you are first diagnosed you are probably referred to a specialist. It turned out our daughter's epilepsy was photo-sensitive, for instance. That is flashing lights might trigger an Epileptic fit.
Two drugs (as far as I remember) were "tried" on Jane. I put the word "tried" in quotes intentionally. You see no-one really knows what causes Epilepsy, nor do they know why a particular drug works. It just does. What we mean by that is the given drug suppresses the symptom of Epilepsy, ie the seizure. That's it.
How does the doctor know the drug works? They ask the patient. So one might ask, how reliable is the evidence of the patient. Disregarding intentional lying, there is another important feature of Epileptic seizures. That features is that the patient does not generally know much about the seizure. They possibly know the seizure is about to happen, but once it starts they know very little, and probably nothing about the episode.
They only begin to become aware of anything a few minutes later after the seizure as they come around. Probably they will themselves decide on the severity of the seizure depending on how much time has passed, the reactions of people around them and their general emotional state after the seizure. Explicitly it will not generally include exact descriptions of convulsions, because when these happen the patient's mind is simply not aware of anything. It has to all intents and purposes shut down.
So one has to ask again, is the patient the best person to ask. A doctor might well say at this point, who else can you ask? This is of course a fair point. The conclusion must be that deciding whether a drug regime is working or not is largely based on hear-say evidence, which I would argue is hardly scientific, and hardly reliable.
It is very important to remember that Epilepsy is episodic in nature. So in my daughter's instance it would generally not be helpful to try to monitor her in a specialist health centre since her seizures were so rare. That is, unless they specifically induced seizures (eg with strobe lights). So generally doctors will rely on this hear-say evidence from the patient, in their own words.
As a result of such evidence that doctor might change the drug, increase the dosage or perhaps add a supplementary drug, They would then tell the patient to go away, and come back in a month or so. And so the cycle would continue until the fits were "controlled", that is suppressed.
No drug regime suppresses all seizures. Anyone with epilepsy could have a fit at any time, even when drugs are considered (by both patient and doctor) as effective. The important thing to remember here is that the U in SUDEP stands for Unnecessary when the drug regime is not effective.
Amongst the other critical points here that I want to make, it is important to know that the strength and incidence of Epilepsy varies as the years roll by. We were advised by doctors that Jane might "grow out" of Epilepsy. Surely such advice is what every parent wants to hear. Music to our ears. And, as I said earlier, Jane had had a full year without incident. So what the doctors said might happen, was indeed happening.
Then bang. The doctors were wrong. The doctors were silent. They never told us Epilepsy could bite back, and hard. I have no science to base this on, but my feeling is that when Epilepsy begins to recur after a person has been largely seizure free is a dangerous time. I now look back and begin to think that Jane's epileptic fits began to accelerate from nowhere both in strength and frequency.
As such her drug regime which had until that moment been good suddenly became obsolete. Ideally of course she should have had a review followed by close monitoring and possibly with a change of drug regime. Hindsight does not help us with our grieving. It might help you, or your friend. So listen hard, please. This is not a joke. This is very serious stuff.
Our analysis and other evidence suggests that men are twice as likely to die of SUDEP. Our analysis and other evidence suggests that young adults (aged 20-30) are twice as likely to die of SUDEP. Some of this is life-style related. Young adults might drink more alcohol, might stay up late at night and burn some midnight oil, as they say. Such lifestyle choices are considered to increase the likelihood of SUDEP. So some of the U in Unnecessary is considered to be lifestyle choices.
The night before our daughter died we know she did not have much alcohol. We think she stayed up late watching the film "PS I Love You." The next morning she awoke and showered to get ready for work. And so we come to the last U - Unwitnessed. Our daughter died, alone in the bathroom. So no-one really know what happened behind that door. All we know is that
- there was evidence (according to the Autopsy) of a seizure,
- there was also evidence of amble in her bloodstream (so she was taking her drugs)
- there was no evidence of malpractice (the door was locked)
- there was no evidence of other reasons for death (she did not bang her head, for instance on the side of the bath)
- otherwise the death might be put down as "natural causes"
If U know someone with epilepsy, or know of someone who knows someone with Epilepsy make sure U tell them about ForJane. That's the last U - YOU.
- DONATE NOW at VirginMoneyGiving ForJane page or
- TELL SOMEONE NOW