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Category: SUDEP

Numb, with knowledge …

Numb, with knowledge …

We have been left numb with the knowledge we have learned today.

Through our sons neurologist review, it was agreed that his Epileptic seizures are resistant to anti-epileptic drugs (AED). We knew this, after trying many different types and combinations without reduction of the seizures, we could see the lack of effectiveness.

What we needed to understand was the impact on the brain of the ongoing seizures, and the long term effect. To our surprise, we learned there is very little certainty in this area, though it is believed that Cognitive problems can develop as a result. More so in children, but also in adults. “Most cognitive complaints in adult patients are mental slowness, memory difficulties and attention deficits. In children, cognitive problems are more diffuse, responsible for language troubles, learning difficulties, poor academic outcome, behaviour problems and finally unfortunate socio-professional prognosis” we are told.

Our son has been exposed to these seizures since he was around 2 or 3 and so fits this definition completely, both child and adult. In itself, it raises questions around his Autism diagnosis and are many of his challenges as much to do with a cognitive decline due to Epilepsy caused brain damage as much as Autism? This may explain for example why the coping mechanisms and interventions are difficult to maintain and may not be fully effective.

Assuming this is correct and we find we are unable to find a way to stop his seizures, a continual decline of his cognitive ability is expected. We also had it confirmed that our son does fall within that group who are subject to sudden and unexplained death in Epilepsy (SUDEP) usually as a consequence of having a seizure that he just doesn’t recover from. An area that is known, but there is still not much understanding of. Life expectancy is shortened considerably and both these points we knew and have been battling to accept.

As for what next. Our son is being referred to a specialist centre for reassessment and potential options for us to consider. As AED’s are not having the ideal effect, it was suggested to us that Vagus nerve stimulation therapy may be an option. To be frank, we are appalled. It sounds like the electric shock treatment physicians used to administer many years ago. I’m not altogether happy with the current success rates either. It may be after reassessment, this is discounted anyway, but we will need convincing if we have to consider putting our son through further surgery with such low success rates. It would appear that any benefit, if achieved at all, could take over two years to realise.

It may well be that we have to accept that through all his complex issues, a decline in health is inevitable and all we can do is to stimulate him where and when we can, but expect an increasing amount of time just making him comfortable and safe.

Today is not a good day and though we hide our tears from our son, he does pick up on our sadness and wonders why, asking is it something he has done!

We now need a sunny day to go on a wheel-walk and forget for a while 🙂

Realities of a life

Realities of a life

A couple of days before our sons neurologist review, we have high hopes that we will be able to discuss a solution that will see an end to his uncontrolled – or ‘Refractory’ seizures. The more we read and learn however, the more distressed we become and the search for that ultimate solution seems as far away now as it has been over the last 31 years.

It is suggested, that if the first two or three AED’s (or Anti Epileptic Drugs) do not control the seizures, then it is unlikely that any of them will.

We have tried a combination of over twelve different drugs, all without complete success and the one which offered the best, though not complete control, does now appear to be failing him too.

Alternate treatments are always suggested, diet (Ketogenic) though results are seen in children, not a 31 year old and only eases the symptoms in most cases, if at all. Vagus nerve stimulation, where implanted wires are connected to the Vagus nerve and an electrical impulse is passed into the Vagus nerve every 7 or 14 seconds which in turn stimulates the brain to avert the seizures. A swipe of battery over the implanted battery pack stimulates the Vagus nerve and may offset the part of the brain about to create the attack if you can sense one coming. We have met a person who has had this VNS and as our son has no warning signs, it would appear, even if it could be considered given he already has a shunt fitted, he would not get the benefit of triggering the stimulation in time to prevent one and would rely on the continual impulse being emitted into the nerve. There is also surgery, to remove part of the brain that is suffering from these attacks, again, not always successful and fraught with complications and further damage to the brain. And of course there is medication.

Our sons condition is complicated by the Autism he has struggled with all these years as well as a complex range of other conditions and as most AED’s have side affects of increased Anxiety and Depression, his already anxious mind goes into overdrive when taking medication, creating many physical symptoms but also serious terrors and hallucinations. Sadly he is now beginning to realise he is unwell and does get very down with it. We battle the reality that he is a likely candidate for SUDEP and the advice is to avoid this, seizure need to be controlled as fully as possible. If that cannot be achieved, short life expectancy and sudden death through a seizure is what the future holds.

It is a critical time and we do need to ask those direct questions of our sons Neurologist. What can be suggested to control these worsening seizures? What does the future look like for our son if they are not controlled? How long will he be able to live the life that God gave him? …. I have never been strong enough to ask these questions or listen to the answer without breaking down and I have nightmares myself wondering and worrying over what we can, or should do and how to support as fulfilling a life as possible for him.

Tomorrow we face these questions and look for any hope we can in what will be said.



A taste of reality …

A taste of reality …

It hit us all quite hard. On Christmas morning, following a well planned build up to the day. Gifts that were not expected came to light and an extreme burst of anxiety rushed in. “What’s this” … “Where is it from” … “What will I do” … “do I open it” … “Can I leave it” … and many more fears, we can only imagine were terrorising his mind as our son come across them.

A person who has Autism can react in this way and we had learned a couple of years ago, to let our son see what his gifts are, help wrap them up and place them in his Christmas sack. That way, the sudden surprise of something different is avoided and he will be calm and in control as he works through what is expected. Completely forgetting all we had learned, we added a couple of last minute gifts that friends had sent him. Suddenly the bright and cheerful morning turned into one of terror. These two gifts had the effect of creating all his worse nightmares, instantly.

That was 21 days ago. This time, although we have been able to work through the fears and eventually get round to opening the gifts, lasting troubles still plague our son with increased uncontrolled seizures, virtually daily and migraines lasting two or three days. His mobility has worsened, his sleep is increasingly disturbed, he has developed severe shakes and his mood is very dark. “I’m sick of this” … “I’ll stop taking the tablets” … ” I wish it would go away” … “I’m fed up with this” … “It’s pointless” … many words he uses as he has heard elsewhere and his Autism brings out Echolalia which is repeating words that have been heard, ironically often in context, but he has no real understanding of them.

My wife and I have seen a step change and have our own fears knowing that uncontrolled seizures can lead to SUDEP and recently several cases have been reported on in the media, bringing home the similarities of the uncontrolled seizure. We know our sons condition is complex and we know and understand his life expectancy will be shorter. We seem to be facing a period where it is very challenging to enable him to become involved in all those experiences or observations we had hoped. For much of the last 21 days, we have sat calmly in our living room with him. He has not wanted to venture outdoors at all, he has not wanted myself or my wife to leave his side and we can see a genuine fear in his eyes if we need to.

His consultants have been made aware and we are monitoring every thing for them when we see them in a few weeks time.

We turn to God to look for his watching and caring love over our son, and for strength and answers. Sometimes we just as, why? We have never heard the words, “I love you Mum, and Dad” and I guess we never will, but those smiles we get from time to time are always heart felt. Of that we are certain.

Our hands, and faith, are with the medical profession now, soon we will know the next steps we will take and our support will of course adjust and change as our sons needs evolve. We may not ever get to see the sun set or rise on a shoreline, we may not get to fly a plane, but we will do all we can to make sure he remains safe, secure and loved …





Sometimes a person with epilepsy dies during or following a seizure for no obvious reason. This Sudden Unexpected Death in Epilepsy (SUDEP) is uncommon and in some cases may be preventable.


For many people, epilepsy is a condition which can be well-managed and has little or no impact on their life. For others, ongoing seizures mean that epilepsy has a long-term impact on them and their ability to have a ‘normal life’. Like some other medical conditions, epilepsy can be a cause of death in some individuals, although this is not common.

There are more than half a million people with epilepsy in the UK. Around 600 people die each year due to Sudden unexpected death in epilepsy (or SUDEP). Although the percentage of the population who are affected by SUDEP is relatively low, every death due to SUDEP is thought to be potentially avoidable.

SUDEP is a research priority for Epilepsy Society, and researchers have made an important breakthrough in discovering that an individual’s genetic makeup may contribute to the risk of SUDEP.

SUDEP can be a difficult subject to talk about. It can be upsetting or worrying to think about. Knowing a little about SUDEP and the risks around having seizures might help you to work out what risks apply to you and how to reduce them so you can feel more in control.

Definition of SUDEP

The textbook definition of SUDEP is

“the sudden, unexpected, witnessed or unwitnessed, non-traumatic, and non-drowning death in patients with epilepsy with or without evidence for a seizure, and excluding documented status epilepticus, in which postmortem examination does not reveal a structural or toxicological cause for death”

This means that SUDEP is when someone is believed to have died during or after a seizure where no other cause of death can be found.

Why does SUDEP happen?

The reasons for SUDEP are not clearly understood. As SUDEP is thought to happen either during or following a seizure, it is possible that it is due to a problem with the person’s heart or breathing during or following the seizure.

The risk factors around SUDEP

Although we don’t know for certain why it happens, there are some situations that are thought to make SUDEP more likely in certain people.

  • As SUDEP is thought to happen during or following a seizure, uncontrolled or poorly controlled seizures are a risk.
  • SUDEP is thought to be more likely in people with frequent seizures, particularly convulsive seizures, than in people with infrequent seizures.

It is worth remembering that the risk of SUDEP varies from one person to another but some of the risks around SUDEP can be reduced.

Reducing risk

As SUDEP is thought to be linked to seizures happening, getting the best seizure control possible is a positive way to reduce risks, including the risk of accident, injury and SUDEP.

Getting the best seizure control possible might include:

  • Take anti-epileptic drugs (AEDs) consistently (every day) and around the same time or times each day. This is sometimes referred to as ‘being adherent’ to medication. If you have difficulties taking your medication (for example, if you find it difficult to remember to take your medication), aids such as pill boxes (drug wallets) might be helpful.
  • Keep a diary of when your seizures happen. This will help to show if there is a pattern to your seizures and whether any situations trigger your seizures (like being tired or stressed). It might also be useful to see how well medication is working to control your seizures. Download ‘Epilepsy Society’ free paper or electronic seizure diaries.
  • If you are still having seizures, having a review of your epilepsy and treatment with a neurologist or epilepsy nurse might be helpful. There may be changes to your treatment that would help to reduce the number of seizures you have.

SUDEP and sleep

SUDEP often happens when the person is asleep. If you have seizures during sleep, having a seizure alarm that alerts someone if you have a seizure, might be helpful. This means that help can be called to check on you at night.

Using safety or ‘anti-suffocation’ pillows, which have holes in them for ventilation means that if you are face down on the pillow during a seizure, you may be able to breathe more easily.

Find out more about alarms and safety aids.