In this section
Introduction
The definition of sudden unexpected death in epilepsy (SUDEP)
The causes of SUDEP
Risk factors of SUDEP
Ways to reduce the risks of SUDEP if you have epilepsy
Ways to reduce the risks of SUDEP for someone who is having a seizure
Further information about SUDEP
Introduction
Epilepsy Action believes that it is very important for people with epilepsy and their families to be aware of the risks associated with epilepsy. This information is about one significant risk, and that is sudden death due to epilepsy.
It is important to remember that the risks of dying because of epilepsy are low. There are also things you can do to make the risks even lower.
Many people who knew somebody who died due to SUDEP have told us they wished they had known more about the risks, before the person died. Therefore, the aim of this information is to raise awareness of the risk of sudden death associated with epilepsy. It also offers practical advice and suggestions on ways to reduce this risk.
There have been many studies carried out into SUDEP and research is continuing. However, SUDEP is still not fully understood by medical professionals. In this information, we can only tell you about the current understanding of SUDEP.
If you would like to discuss anything to do with SUDEP, you could speak to an adviser on the Epilepsy Helpline, freephone 0808 800 5050 (UK only). You could also contact your family doctor, epilepsy specialist, or epilepsy nurse.
The definition of sudden unexpected death in epilepsy (SUDEP)
If a person with epilepsy dies suddenly and unexpectedly, and no obvious cause of death can be found, it is called sudden unexpected death in epilepsy (SUDEP). Sometimes, it is called sudden unexplained death in epilepsy.
The causes of SUDEP
SUDEP has been shown to be connected with seizures. The exact cause is not known and there may be no single explanation. However, it is thought that seizure activity in the brain may sometimes cause changes in the person’s heartbeat or breathing. This could cause the person to stop breathing or their heart to stop beating.
Risk factors of SUDEP
It is estimated that SUDEP happens to one in every 1,000 people with epilepsy. There is no way of predicting who will be affected by SUDEP. However, some people with epilepsy have a higher risk of SUDEP than others. The single most important risk factor is uncontrolled generalised tonic-clonic seizures. This is a type of seizure that causes the person to lose consciousness. Their body goes stiff and then starts jerking.
SUDEP has occurred in people who had seizures very often, and also in people who did not have them very often. However, the risk is thought to be higher, the more seizures you have. The risk of SUDEP if you are seizure-free is very, very low. And, SUDEP is rare in people who are newly diagnosed with epilepsy.
Any of the following things are thought to increase a person’s risk of SUDEP.
- Having uncontrolled generalised tonic-clonic seizures
- Not taking epilepsy medicines as prescribed
- Having seizures that are not controlled by epilepsy medicines
- Having sudden and frequent changes to epilepsy medicines
- Being a young adult (in particular male)
- Having sleep seizures
- Having seizures when alone
- Drinking large amounts of alcohol
Ways to reduce the risks of SUDEP if you have epilepsy
Seizure control
The most effective way to reduce the risk of SUDEP is to have as few seizures as possible. If your seizures are not controlled, here are some ways that you can manage your epilepsy, to try and reduce them.
- Always take your epilepsy medicines as prescribed.
- Never stop taking your epilepsy medicines, or make changes to them, without talking to your doctor first.
- Make sure that you never run out of your epilepsy medicines.
- Ask your epilepsy specialist or epilepsy nurse in advance what you should do if you ever forget to take your epilepsy medicines.
- If your seizures continue, ask to be referred to an epilepsy specialist for a review of your epilepsy. They may be able to suggest changes to your epilepsy medicines, or other treatment options, which may include surgery.
- Keep a diary of your seizures. This can help doctors when they are considering the best treatment for you. It may also help you to see if there is a pattern to your seizures, or anything that triggers your seizures.
- Avoid situations which may trigger your seizures. Common triggers include forgetting to take epilepsy medicines, lack of sleep, stress and too much alcohol.
- If your epilepsy is very difficult to control, ask your specialist if you could be referred to a specialist epilepsy centre for treatment. Contact Epilepsy Action for more information about this.
Epilepsy Action has more information about epilepsy medicines, surgery, seizure diaries and seizure triggers.
Other ways to reduce risk
- If your seizures happen at night, consider using a bed alarm, which can alert another person if you have a seizure. This will enable the person to help you. For example, they can put you in the recovery position or call for an ambulance, if necessary. (Be aware that bed alarms are not always perfect. They may sometimes miss seizures or go off without a reason. And it’s important to know that there is no proof that bed alarms reduce the risk of SUDEP.) Information about bed alarms is available from the Disabled Living Foundation:
Tel: 0845 130 9177
Website: www.dlf.org.uk - Tell people about your epilepsy and let them know how they can help you if you have a seizure. You may choose to wear identity jewellery or carry some form of epilepsy awareness card to make other people aware of your epilepsy.
- Having seizures when you are alone is a risk factor for SUDEP. You may wish to bear this in mind when you are making plans for where you live and what you do. For example, you may choose to live with other people.
Epilepsy Action has more information about safety and epilepsy, identity jewellery and epilepsy awareness cards.
Ways to reduce the risks of SUDEP for someone who is having a seizure
You may be with someone when they have a seizure which causes them to lose consciousness. Here are some things you can do to help them recover. Your actions may also reduce the risks of SUDEP.
Remember ACTION for tonic-clonic seizures:
| A | Assess Assess the situation – are they in danger of injuring themselves? Remove any nearby objects that could cause injury |
| C | Cushion Cushion their head (with a jumper, for example) to protect them from head injury |
| T | Time Check the time – if the seizure lasts longer than five minutes you should call an ambulance |
| I | Identity Look for a medical bracelet or ID card – it may give you information about the person’s seizures and what to do |
| O | Over Once the seizure is over, put them on their side (in the recovery position). Stay with them and reassure them as they come round |
| N | Never Never restrain the person, put something in their mouth or try to give them food or drink |
The recovery position
Call for an ambulance if...
- You know it is the person’s first seizure, or
- The seizure continues for more than five minutes, or
- One tonic-clonic seizure follows another without the person regaining consciousness between seizures, or
- The person is injured during the seizure, or
- You believe the person needs urgent medical attention
Further information about SUDEP
Epilepsy Bereaved
Epilepsy Bereaved offers support and information for people affected by SUDEP and other bereavements related to epilepsy. They also promote research into the causes of SUDEP.
Tel: 01235 772 852
Website: www.sudep.org
This information was written by Epilepsy Action’s advice and information team with guidance and input from people living with epilepsy and medical experts.
If you would like to see this information with references, visit the Advice and Information references section of our website. See SUDEP.
Epilepsy Action would like to thank Dr Lina Nashef, consultant neurologist at Kings College Hospital, UK for her contribution to this information.
Dr Lina Nashef has no conflict of interest to declare.
This information has been produced under the terms of The Information Standard.
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Updated January 2013To be reviewed January 2015
Comments: read the 27 comments or add yours
Comments
I am so sorry to hear from the families on here that have lost a loved one to SUDEP... I have an 18yr old daughter who has suffered with various siezures since being 5yrs old as a result of Rasmussens Syndrome, the syndrome left my perfectly healthy child with learning difficulties, a weakness down one side of her body, blindness & took away her speech. Even though she has had 2 brain ops the thing that always scared me most was leaving her alone at night as she often has seizures through the night (i was never offered a mat at this time or even knew they existed!!)... Her seizures improved for 2 yrs after the second brain op but unfortunately returned as tonic clonic ones last yr & my fear of leaving her alone whilst she slept increased especially as the seizure would last for upto 3 mins & restrict her breathing... after so many sleepless nights next to her, i pleaded with her occupational health worker.. The result being getting her a mat to place under her bed FREE!!!... I'm not saying the mats are perfect, they often falsely go off in the night... but life has significantly improved since... so i urge any of you who are under huge amounts of stress & worry over this issue to harrass your occupational health or social workers until they provide you with one.
My son Gavin died of sudep on the 14th of April 2011, aged just 25. i will never forget that day i had just come back from doing some shopping and as i came in thge back door and shouted hi Gav i got no answer i went into his room which was downstairs and he was slumped on his knees leaning on his bookcase i went over to see what was wrong and as soon as i seen him i knew he had passed away. I always feel if i was at home i could have done something but i was told there was nothing i could have have done but it doesnt stop you from wondering. Sandra Moseley mother of the beautiful Gavin/xxxxxxxxxx.
I am currently applying for DLA. I have seizures on a regular basis every one to two weeks, maximum 3 weeks if i am lucky. I have complex partial seizures and tonic clonic without warning.
This has been the case for 2 + years now and control is no nearer despite drug changes.
Am i at risk if on my own? I feel very concerned and worried and usually friends or family or colleagues are with me.
DLA say i do not qualify under their assessment, what is my right in this situation?
Thanks
Hi, unfortunately, for people having frequent seizures there can be a risk of injury during a seizure. That’s why some people with epilepsy will be entitled to the Disability Living Allowance.
If you are going to ask for a revisions or appeals against the DLA decision, you may wish to look at our safety information. We also have a guide to help people with epilepsy wishing to claim the DLA. Although it’s aimed at helping people applying for the DLA, it may also be helpful for revisions or appeals against the DLA decision. If you wish to receive a copy, you can order it from our shop, or by emailing or phoning the Epilepsy Helpline. Our contact details are helpline@epilepsy.org.uk and freephone 0808 800 5050.
You may also wish to get help from the Citizens Advice Bureau who specialise in welfare benefits. They can provide more information about your eligibility to receive the DLA and help you to complete a revision request or appeal if needed. For details of your local branch, tel. 020 7833 2181.
If you think it will help to talk to someone on our helpline team regarding your epilepsy, please feel free to contact us. You can email or phone us using the above contact details.
Diane
Advice and Information Team
My partner Sadie had epilepsy she got it her teens after cracking her head open at a swimming pool in the time i new her our love grew with each day and we moved into a house near her parents with her 6 year old boy we lived there for a year but we had to move due to my work being so far away so looked for a house nearer to my work we fell in love when we viewed a house and wonted it so much we moved in and sadie new i wonted kids as she always said i was more a dad to her son then his real dad and sure anoth on the 1st of feb 2012 my little boy was born i will never forget the happiness on sadie's face and the tears of joy running down her face. sadie's epilepsy had been so well controlled for well over a year and i new she adored me so much and at times i felt i didn't deserve her and she was loving mother hood and was always glowing after giving birth to her new born son but on the 24th of feb 2012 i got up as normal got ready for work sadie had got up to just as was about to leave and id made her a cup of tea and kissed her goodbye she said she was feeling a bit funny i said just to sit down and drink your tea knowing her mother was only up stairs if there was problem as she was staying for the week so i left got to work was at work when i get a call from sadies dad saying i need to go home as sadie has had a fit i just thought it was just a fit and she will be ok in a few hours but went home anyway to make sure she was ok and as i got home seeing an ambulance and a fast responce car outside thought it was a bit much getting out the car and there saying i can't go inside just yet and started to explain sadie had stopped breathing but they had managed to get her breathing again the hospital done everything they could but on the 26th feb 2012 they said there was nothing could be done death cert saying unexpected death so im now trying to bring 2 wonderful boys up and people say what a great job im doing but it means nothing without sadie with me i miss her so iv written this with tears pouring down my face but just had to write it to get it out there.
HI, I HAVE SUFFERED FROM EPILEPSY SINCE 2007 AND READING WHAT THE WEBSITE HAS PUT ON HERE HAS CERTAINLY SURPRISED ME WITH SOME OF THE THINGS THEY HAVE PUT ON. I LOSE CONCIOUSNESS SOMETIMES BUT NOT ALWAYS. I HAVE ALSO STARTED GETTING REALLY HOT FLUSHES (DON'T KNOW IF THEY HAVE ANYTHING TO DO WITH EPILEPSY) ALL I CAN SAY IS THANK YOU TO THE WEBSITE. VERY MUCH AN EYE OPENER.
Hi I'm 24 and have had photosensitive epilepsy since I was 16. I suffer from grand mal ,tonic clonic siezures. The before and after effects are the worst and always worries me that something bad will happen to me. Although I havnt had a fit in 3 years I normally go unconsious foam at the mouth an blue in the face. The pain after is so bad and my headaches are the worst. I constantly moan about my epilepsy because even though its been a while since my last fit I am petrified I will take another more so if I'm alone as I live far away from my family and can't always be with my patner. I feel at my worst when I have had alcohol and lack of sleep but under the impression that people think I'm over the top. I also suffer from agraphobia wich when I panic I feel I'm going to take a fit so tend to flee from the situation or try to avoid it completely I feel its taking over my life and no one seems to understand. Its sounds silly but wish my patner could seem me take a fit so she could understand
I will never forget the day my mom called me to give me the new that my 42 uncle had passed away so unexpectedly. It was June 7 2012. My grandma found him in his room since he lived with her. She was wondering the next day why he had not come downstairs to eat so she called out to him. No answer. She went upstairs because she knew he had these epileptic seizures, and then she found him. She blames herself for not having found him sooner but it is not her fault. God decided that it was the day to take him we all don't understand why. Till this day I feel it isn't fair, just to trust in god he knows why he does things and shortly after my uncle passed I find out that I am pregnant. I feel like god always takes something away and gives something back even if it is the most painful. God bless everyone and sorry for your lost ones!
Hello. My little boy is 2 and a half and today he had his 4th seizure. I wasn't expecting it. I was kneeling on the floor as we were playing with play dough and he suddenly made that funny sound and went rigid and fell down. He was absent for a few seconds then started curling inwards and went grey. He was on day 2 of Epilim and his previous 3 seizures had been when he was sitting/ lying down and was dropping off to sleep. (1 status epilepticus lasting over an hour, 1 tonic clonic lasting less than 5 mins and and 1 tonic clonic lasting 5 mins)This was just after lunch. His post dictal phase lasted over 2 hours. Up until now I have felt really positive but today I am frightened that he has a dreadful syndrome and I might lose him. He is so clever and funny and loving. I don't want to lose him. How likely is it that he has Dravets or something equally degenerative and horrible. Who can give me a prognosis about my little boy?
Hi. It can be really distressing to see your child having a seizure, especially when he is so young. Epilepsy medicine takes about two weeks to get into your system. And then it may take a while to get the right dose of the medicine. So it is very early days with regard to how well his Epilim will work.
Certainly some of the syndromes do make for very difficult reading. But the possibility of your son having Dravets for example, is one or two in every 500 children with epilepsy. And only the milder syndromes are a little more common. By milder I particularly mean syndromes in which it is possible for a child to get seizure control, and not necessarily be affected long term in any other way.
Meanwhile, I wonder if there is an epilepsy nurse you can talk to, before your next appointment with a specialist ? If there isn’t, and you are continuing to feel anxious, it may be useful to talk to your family doctor. You are also very welcome to ring our Freephone Epilepsy Helpline.
I really hope things improve for you and your boy very soon.
Cherry
Advice and Information Team
More information on children with epilepsy
More information on epilepsy medicine
More information on the Epilepsy Helpline
I'll never forget that night my mum passed away, I was in bed as I had school in the morning. My mum and dad were still up and I was woken up but the sound of my mum, it sounded as if she was crying. But I was wrong, she was in the middle of having a grand mal seizure, my dad managed to get her to their room and into bed to try and sleep it off when the fitting calmed down, then all of a sudden my mum started to littrely rolled down the bed, my dad (bless his heart) tried his best to keep her from falling off the bed and hurting herself.
My dad had no option but to gently let her go on the floor. I came back out my room as I heard my dad on the phone to emergency out of hours number. I went into my parents room to my mum in the recovery position. I sat on the bed looking down at my mum, I heard my dad shouting through to me to talk to my mum, but I was too upset and scared to even utter a word. I was only thirteen at the time, I have seen my mum have seizures before but never seen her take one that bad that night.
Once the paramedics came, they tried a couple of times to get her back to life, but failed. So they pronounced her dead. She was 46, just a month shy of turning 47.
I'm not a deeply religious person, but I know mum you looking down on me going that's my little girl. I know your not here in person with me, but you'll always be with me in spirit. R. I. P. mum 1954 - 2001
My husband,Richard age 72, died suddenly last Thursday 6 December 2012 and the cause of death has been put down as SUDEP. He had not had a fit for three years and thought that the. epilepsy, which was the gran mal, which he had since a teenager, was over. Richard would always have known about this sudden death risk all his life but never in Orur 40 year marriage did he tell me. I'm so sad I did.not know this. God Bless and keep you Richard. Xx
After reading all these comments it has been a real eye opener. I have temporal lobe epilepsy and had my first seizer when I was 15 years old. Before then I used to have petit mal for years. To be honesty the petit mal were worst for me then the seizer because you’re still conscious and don’t know what’s going on. After a seizer it’s like having a massive hangover, I always bite my tough which hurts a lot and every bone in my body hurts but I know alot of people have to go through worse things and I respected them for that.
It took me a long time to get diagnose because the doctors told me it was just hormones and that I would grow out of it and they didn’t want to rush putting me on medication. Also because I was between seeing a children’s specialised and an adult specialised they lost a lot of my information and didn’t realise how many seizers I was having. I really wanted to say thanks to my mum and dad because they were the ones who kept pushing me to go back to the doctors and having to watch me have seizers but not knowing what to do. It was really hard because when I went to one doctor she said I needed to stop coming and get on with my life but I was still having seizers and petit mal’s and didn’t know how to get on with my life.
I finally went on medication when I was 17 and after trying different things have been able to get the seizers under control. I haven’t had a seizer awake for a year and a half but still have them in my sleep about every 3months. Reading what I have today has really shocked me because I always thought it was people who have seizers every week who are at risk. I have never let epilepsy stop me from what I want to do and now im 22 years old and I am on a holiday working visa is New Zealand and plan to go to Australia after my visa runs out. I have found that when I have seizers in my sleep in the hostels people have been really helpful and there haven’t been any problems. Also I was on lamotrigine when in England but they don’t have the same thing over here so put me on some other medication which is the same kind of thing but it seems to be working alot better than the other medication. I still have seizers in my sleep and the doctor that I spoke to doesn’t think they will stop but at least I don’t have them awake anymore so I can get on with my life and see the world.
My heart goes out to anyone who has lost a family or friend from epilepsy and I really respect people writing about it. I guess you have to live life to the full and it looks like everyone who has written about a person has had a great life before and never let epilepsy stop them from doing what they want in life.
Heartbroken writing this. My dad died unexpectedly on 6th December 2012 of SUDEP. He was 72. Fitter than anyone I know. Never drank and never smoked. He will have known about this risk yet never said a word to any of us. Thought he would live forever. I think more needs to be done to make people aware of this as I'm sure people may view epileptic sufferers lives a little differently and make each moment count given you literally never know the moment that they may be struck down with this. Rest in Peace dad, missing you more every day xx
My Son died in his cell at Exeter prison he was found unresponsive at 7am on the Thursday morning he was on hourly checks as he had a seizure earlier in the day i am not happy with the surrounding circumstances the inquest was inconclusive, they have kept his brain for analysis so have not had results as yet but reading about sudep is making me think this could have happened to him i am devasted and there is an ongoing investigation by the ombudsman because i beleive he should not have been left on his own i am also unsure whether he was given medication because his fits were rare and caused due to withdrawing off drugs and being refused medication...
My son died of cot death he had been suffering from infantile seizures clonic seizures and neck spasms weeks before I was told by my doctor to record his episodes but a few days later I found him in his cot past away like marianna said he was very blue particularly his mouth and tounge could this be the same ???
I have had epilepsy for over 2 years but had not suffered a tonic clonic since 1st June 2012. I'd been given various meds to try and final settled with lamotrogen. I started having petit mal seizures which I hadn't had before and like the comment before left me with a terrible headache and often confused. On 16th Feb this year I had a tonic clonic whilst playing tennis and was taken to hospital for precaution. After a CT scan to check for a bleed ( I have cavonous heamaginoma ) and taken back to my bay in A&E. the next thing I remember was waking up in resus. The doctor told me she came in to give me the scan results and I had a vacant look on my face. I then went in to a full tonic clonic and my airways were blocked and I turned blue. I was out for an hour before I came round. If this second seizure was anywhere else I dread to think of what could of happened.
I don't drink for the obvious reasons and use exercise as a stress relief. I'm worried that this may be havening an effect?? Can anyone advise on their experience?
Also my consultant has mentioned the possibility of surgery. Has anyone got any views on this?
My heart goes out to all that have lost family or friends to SUDEP.
That sounds like an extremely scary experience. And yes, thank goodness you were already in hospital.
People with epilepsy have different experiences with exercise. Mostly it can be very useful. As you say it can really help reduce stress levels, which is good for all of us. But other people find that doing serious physical exertion can sometimes bring on a seizure.
Different people’s experiences of exercise are discussed on our online community, forum4e. Also there are many people on the forum who have gone through surgery, are in the middle of tests, or are just thinking about it. So you might want to think about joining forum4e. It’s for people with epilepsy and carers of people with epilepsy.
I hope things start to settle down for you soon.
Cherry
Advice and Information Team
My daughter who is 17 has just been diagnosed with nocturnal epilepsy, she has grand mal seizures, tonic clonic in her sleep. I am terrified I lose her but this is a new diagnosis. Please how can I get a mattress ASAP , an anti suffocation pillow?
I do to know where to turn?
Hi Trudy
It’s a worry, when you’re frightened you might miss a seizure, isn’t it? Sometimes a bed alarm can give some reassurance. It might also help you to know that most seizures stop of their own accord, whether they happen while asleep or awake.
There is an organisation called Disabled Living Foundation who have details of manufacturers who do alarms. There is also an organisation we are aware of that sell safety pillows. They are called Chester Mobility Centre. You could make some enquiries.
Rosanna
Advice and Information Team
My daughter is 11 months old and has had 8 seizures since jan 2013-march 2013, now she had a ECG and a EEG but inconclusive for epilepsy, they first thought if was febrile convultions but now changed their minds as she hasn't been unwell or had a temp with the last three fits, the lastest fit lasted over five mins and had to be stopped using drugs, which really scared me, now after reading all of the comments on here I'm really scared what to think wether she has some different kind of epilepsy, in jan she was admitted five days in hospital and this month three days in hospital, I'm stressing myself out, I've moved the baby bk into my room as I'm scared she might have another through the night, the doctors hasn't given me a name for what happens, just says she has prolonged convultions? What does this mean or does anyone have any ideas what these fits are from? She's otherwise normal healthy baby, no birth problems etc, no family history of fits, this just came out of the blue :(
Hi Emma,
It can be very scary to see your child having seizures, particularly if they go on for a long time. Emergency medicines are sometimes used if a tonic-clonic seizure goes on for more than five minutes or if someone is going from one tonic-clonic seizure to another in a short space of time.
It’s difficult to say why someone might have epilepsy. Sometimes the reason epilepsy develops is obvious. But for most people (six out of 10) there’s no known cause. For lots of people, doctors can’t find what’s caused their epilepsy. Epilepsy can happen to anyone at any time. Sometimes it just comes out of nowhere.
If you worry about your daughter having a seizure during the night you might consider a seizure alarm. They are not suitable for everyone’s epilepsy but more information is available from the Disabled Living Foundation: Tel: 0845 130 9177
Have you spoken to specialist epilepsy nurse? They can spend time with you discussing your daughter’s epilepsy, her treatment and any problems she might have related to her epilepsy. They may be able to talk to you over the telephone or visit you at home. You may have already seen a specialist epilepsy nurse. If not, your family doctor, epilepsy specialist or Epilepsy Action can tell you if there is one you can get in touch with.
It sounds like this is a worrying and confusing time for you. Perhaps it might help to contact our freephone helpline where you can talk through your worries with an advice and information officer.
You may be interested in our online community, forum4e. This is for people with epilepsy and carers of people with epilepsy. Hopefully, you will be able to talk to others in a similar situation.
If we can be of any more help please feel free to contact us again either by email or the epilepsy helpline freephone number 0808 800 5050
Vicky Morris
Advice & Information Officer
Thanks for getting back to me, my daughter was admitted back to hospital last week with another fit, the fit lasted 3:20 secs, I dealt with the fit fine but had to call a ambulance out as her lips starting turning blue, within 8 hrs she had another fit in hospital that lasted over five mins so buccolam was used to stop the fit, this fit followed by a little one with lip smacking, at the time these fits didn't have a temperature or viral infection, I've spoke to the epilepsy peditriction and my epilepsy nurse and have decided to start her on medication called phenobarbital twice daily so I'm hoping this works, I've read some of the side effects like slow development and hyper activity but i don't know much more about it as they haven't really explained about it, but I'd rather deal with being slow and hyper than another fit that scare me so bad, but I will keep you updated on how this drug goes, she's on this now for a year and has another ECG and EEG booked in for out patients in a few months but weather that will show anything I don't kno as the last ones where clear so we'll see what happens x
Today I got the call that broke my heart. My niece celebrated her 2nd birthday last week and she was running around, smiling and happy. In the early hours of the morning she had a seizure. The second seizure she has ever had in her short life. The first was last year and then today. When I got the call I thought I had imagined it as I just saw her last week and she was fine. I was sure it was a mistake. I even convinced myself on the way to my sisters that it was a mistake and that they just didn't no how to take a pulse. My mum tried CPR and everything to try to bring her granddaughter back and thought she had until the paramedic said it was her pulse in her own hand she could feel. We arrived at the hospital and I tried to be strong but I couldn't. I burst into tears. We saw her and she looked like she was smiling in her sleep. I still thought she was alive and that it was a mistake. She has gone. She has just gone. Disappeared. The worst thing is that my nieces brother (4) doesn't understand what's happened. We tried to explain that she has gone to heaven and she is an angel and everything and he says that he understands but then says when is she coming back. I hate this.
my 19 year old daughter Gemma died on the 20th of February this year. She had type 1 diabetes and epilepsy. Her diabetes had first class attention but her epilepsy was always second to the diabetes. a post mortem returned inconclusive results but a coroner's inquest will take place sometime later this year. Her brain has been kept for tests as her heart and other organs were fine and not the cause of death. I feel very angry about the lack of care relating to her epilepsy. I still don't know what type of epilepsy she had even though she had been diagnosed for over ten years. She lived with my parents and I had lost touch with her care.. she was meant to have a video link appointment the day after she died. It all seems too little too late. will the coroners inquest look into what care she had? did she have the right amount of tests? I don't want to seem like the Mum looking for someone to blame, but some people seem to have had mri's, eeg's and epilepsy nurses eavh year. Gemma had none of that, her diabetes specialist looked after her epilepsy care and handled her medication. I just want to fight her corner if I need too? ... I feel alone since she died and I want someone medically trained to tell me what happened. has anyone else been through this? I would have had her illnesses for her if I could have.. it doesn't work like that though does it!
I would like to share my story particularly for those parents of children who have started having seizures and who, like me will be going through a living hell, are anxious with nowhere to turn & no answers to their questions.
I would like to share Molly's story...
Molly is my daughter, she is 4 years old, 5 in July. She is an amazing little girl, full of life & mischief & a real live wire.
At 7 months of age, Molly was a happy healthy baby, I had never had cause to worry about her. But at this time I was at work when I had a call from my husband, 'Mollys fitting', at that point my heart was in my throat, fitting?? I couldn't grasp what I was being told, how could she be fitting? & I'm thinking is she going to die? What else could this mean - epilepsy crossed my mind but I ruled it out no sooner had I thought it. No-one in my family has it, I'd never met anyone with epilepsy nor seen an epileptic fit. I was numb, my whole body seemed to shut down, a colleague rushed me to the hospital. As I arrived I was directed through to resus where there was a flurry of activity, drs everywhere, as they parted there laid my baby convulsing. I remember the urgency, the panic & was convinced I'd lost her.
Molly was medicated to stop the fit, she had been in the fit for over an hour. Afterwards? We were told she had suffered a febrile convulsion something I'd never heard of but was told was common.
After a few days in hospital we left & I prayed I would never see her in that state again.
Sadly it was only a short time later that Molly had her next seizure, followed by many others, the most recent being on 23 March 2013.
Up until Molly was 2 yrs having at worse 6 weekly seizures I was still told she was having febrile convulsions. As I researched this I didn't agree, her fits weren't short & she couldn't self resolve she always required intervention. I was in despair, arguing with medical professionals I wanted them to help my baby. Eventually she was put onto sodium valproate, I thought she'd be fine, they would stop but while they lessened in frequency when she had them they were just as severe lasting anything between 25 mins to in excess of an hour. With normal EEG & MRI results I was then told that she has a 'known seizure disorder'. Ironic really that it be labelled in such a way as there was nothing 'known' about it, I didn't understand any of it. Everytime Molly would have to be blue lighted to hospital & would end up in resus, each time I thought it could be her last, that id lost my little girl, with each time I've lost a little piece of me, it's weakened me, it's made life a little less bareable caused me immense pain.
In the last 2 years there have been huge developments, the seizures have slowed right down, last year Molly went 10 mnths without a fit, then up until 23 march she was a year clear. The medication is obviously working but it takes for a parent to be on top of everything in the care of their child, drs won't increase her meds in line with her increasing size as she grows. Despite repeat requests her meds hadn't been increased this past year, I'm sure this in part is to blame for her fall recently. I have battled the NHS tirelessly to get answers & to keep my little girl from ending up permanently damaged or worse. It is only through all of this that eventually agreement was given to fund genetic testing for Molly. This showed she has the SCN1A gene mutation this meaning Molly was diagnosed with Dravet syndrome 6 months ago.
I can remember clearly being told this was the diagnosis, Molly was labelled and I was told she'll never get better will never lead a normal life, will never have children...
I left that meeting broken, my whole world collapsed and I couldn't see my way back. I was giving up I hadn't the physical or mental strength to fight any longer. I had nearly lost my baby twice, twice she had ended in respiratory arrest, once having been overdosed with diazepam by a paramedic, another time having a bad reaction to midazolam given to us as a rescue medication.
My fight has been long & pain stakingly hard, the message I want to give is to parents who are unsure - ask the questions, scream if you have to, don't settle, demand answers & keep at it til you have them - I don't agree that there isnt an answer, there's always an answer. My answer is Dravet syndrome, my beautiful girl has a horrendous illness that could take her from me, it means I live each day in fear of the next fit & the time I spent preceding it being my last with Molly. I watch her fit & I know the effect the sickening feeling, I can't catch my breath. On 23 march Molly went into a seizure, knowing how severe they are, that she can't self resolve as with every other time I panic but do what is necessary, I called 999 & explained the full circumstances, I was told help was on it's way. After 20 minutes & having given her diazepam with no effect a first responder arrived. He was helpless aside oxygen he had no real use, we needed an ambulance she needed to get to hospital. He chased the ambulance with his control room, Molly was still fitting her breathing so shallow I couldn't tell of or when she was breathing, her lips blue as I hear the transmission back 'we have no-one to send', 10 minutes later & still fitting, another transmission, an ambulance has been found but they're half hours journey away & it's snowing hard outside. I couldn't believe what I was hearing petrified all I could do was hold her hand & tell her everything would be ok, I didn't believe these words...
After 1 hour 10 minutes we arrived in resus & the relief I felt immense.
Asides the seizures Molly also has delayed global development, poor sleep patterns & poor confidence in walking & running she also has hypermobility.
For all that's against her, all she's been through I feel so blessed as she is a truly wonderful little girl, loving & affectionate with a wicked sense of humour.
Molly is a blessing, if I could I would take dravet syndrome from her in a heartbeat, I would not want anything more than to make it better as she is my world. I have to be thankful for her as she is, & make the most of all that she is as the future is so uncertain.
I share our past four years condensed to this to raise awareness & tell our story, I am so very thankful to all those who have chosen to share their stories a without this alot of questions would have gone & would still go unanswered. Epilepsy with all it's meanings has such a huge impact on those that suffer it & all those who love & care for that person. My heart goes out to everyone who have shared their story, are reading these comments because epilepsy is effecting them & they're searching for answers. X
I had my first tonic-clonic seizure, out of the blue in 2007 when I was 59. The seizures are now becoming under control. The last occurence was in Oct 2011 when I was in status epilepticus. The ambulance crew were considering administering rectal diazepam, but that was eventually administered in A&E. I would suggest that those with epilepsy (or look after them) discuss whether those near should have training in administering rectal or buccal (between the gums and cheek) diazepam. This may help once a person has gone into status epilepticus, and reduce the numbers succumbing to SUDEP.