Hi, I am Elena Rayne. But many knows me as Ellie Rayne. Or even Ellie’s Journal blogger. I want to tell you of my own Epilepsy story.
by Dan Dougherty
Have you ever lost your car keys and were faced with the prospect of not knowing how to get to work, school or meeting a friend for lunch? How did you feel? Since I was diagnosed with uncontrolled epilepsy thirty (30) years ago, I have dealt with this limitation on a daily basis.
Epilepsy is a neurological disorder that causes sudden unexpected electrical charges to the brain, resulting in what is commonly known as a seizure. It doesn’t “get the press” that it is due and, therefore, you may be surprised to learn that, in the United States alone, there are three (3) million (almost 2 out of 100) reported cases. To put it into context, that is more than the total number of people suffering from Cerebral Palsy, Parkinson’s Disease and Multiple Sclerosis (MS) combined!
Throughout the ages, up to the early twentieth century, individuals suffering from this disorder were treated as if they were possessed by the devil or were mentally challenged and placed in an asylum for the rest of their natural lives. For many years, because of this stigma, many people would be too embarrassed to admit that they had epilepsy.
Thanks to modern technology, we have moved beyond the fears and superstitions of the past. Doctors can locate and identify injured portions of the brain that cause seizures and develop an appropriate treatment plan. A majority of people with epilepsy have brought their seizures under control with medication and live relatively normal lives.
Thanks to my faith and the loving support of my family, I have met the challenges and accepted this cross God has given me as a gift to speak openly, as an advocate, about the limitations that come with epilepsy. I am reminded of those hopeful words: “When God closes a door, He always opens a window”.
My name is Derrick. I had my first seizure when I was 9 years old. No reason, no known cause they just started.
It didn’t take long before I realized I had to quit sports, and I realized my dream of becoming an aircraft mechanic for the US Air Force would never happen.
The next 9 years of my life would be hell: grade school, junior high, high school and about a year or so after high school.
For those 9 years I had the worst neurologist ever, he often contradicted himself and did no help in convincing me and my mother that there was hope for resolving my epilepsy, and our health care offered no other options for us when it came to neurologist in the area.
But if anything came from my epilepsy, I would say it would have to be some of the best friends in the world. When you have epilepsy, you become a responsibility for those around you, and only those who truly appreciate you as an individual will not have an issue with maintaining that responsibility. When my friends and I would head out for a weekend road trip they’d always ask and make sure I had enough medication. They’d pick me up at the beginning of the night and drop me off at the end of the night.
When I turned 18, I got put under new health care and was able to see a new neurologist. By this time I was having 12 seizures a day: mostly partial complex but at times grand mal. I was on over 3,000 mg of medication a day.
I remember the first day visiting my new neurologist after telling him my story he replied “This is ridiculous you need brain surgery”. We suggested VNS therapy first but he insisted the success rate was too low.
About 6 months later I went under the knife, and had a section of my right frontal lobe removed. I have now been seizure free for 11 years!
At 21 I got my driver’s license, at 25 I got my motorcycle license and started college, at 27 I got my Bachelors Degree in Audio Engineering, and now I live in the Silicon Valley employed as an IT specialist.
I wish there was more I could do for the epilepsy community with my knowledge of computer programing, electronics and sound. When I was in college I wired an EEG machine to my computer and made a program that translated your brainwaves into music in hopes to help kids understand the functions and different parts of the brain. I suggest to anybody with partial epilepsy consider brain surgery.
The problem with trying to tell the story of how your child developed epilepsy as that each of us could really write a book. I see why people write blogs. I’ll try my best to keep this as concise as possible! I’ll miss out some things and try to keep to the basic story.
David was our second child. He had an older sister who was ridiculously pretty and engaging but who seemed to be born without the need to sleep so we were in a hazy state of exhaustion most of the time. She was two and a half when David was born and by some wonderful coincidence started to sleep through the night. David was an almost caricature sweet baby. He was quiet, content, slept really well and was always so cheerful. He never seemed to cry! Honestly, on a morning we’d know he was awake because we’d hear him giggling in his cot! So we went from being a sleep deprived couple with one child to being an energetic, spoilt for sleep couple with two kids. He carried on being like that as he grew. If he ever cried we’d really panic because it had to be serious. When his younger sister was born he was protective and helpful. I’m not exaggerating he really was and is the loveliest kid.
We always tended to go to colder places on holiday. I have family in Iceland and my wife has a thing in general about Scandinavia so it was what the kids were used to. I have loads of pictures of them on the beach playing with jumpers on! Finland was always sunny though. One year we went to the Isle of Lewis in the Outer Hebrides. It is unbelievably beautiful. David was not far short of his sixth birthday and we were playing on Uig beach (the big one). My wife was dozing and I was playing cricket with the kids. Suddenly, David grabbed his right arm just above the elbow. His right hand then jerked up to his eye. He did this suddenly as though something had either hurt his arm or his eye. He then started making the most awful noise. It’s hard to describe. A bit like the sound you might make in your throat if you’re trying unsuccessfully to lift a really heavy weight but it was strangled, high pitched and sounded as if he was in terrible pain. He fell to his knees. It lasted for about 20-30 seconds. By this time I was sure he had sand in his eye and for some reason it was particulary painful. I got a water bottle and tried to wash his eye but it seemed to be alright. We were a bit shaken but he just wanted to carry on playing. Then about an hour later it happened again. We were totally baffled. The worst thing was that he seemed to be in dreadful pain. There didn’t seem anything outwardly wrong with him but it was really worrying. He was fine for the rest of the day but then it happened again when he was in bed having a story. The following morning we took him to Stornaway Hospital by which time it was happening every 40 minutes so he had a few in the hospital, which was handy. They told us it seemed to be some kind of seizure and it would be best to get him home. They gave us a letter to give to our G.P.
David was his normal bouncy self, never miserable or fed up. His sisters were worried and tearful. My wife was strong in front of the kids and a mess with me. I was just convinced he would have his arm amputated or lose his sight. I can’t tell you the fear you feel when there is something wrong with your child and the awful feeling of failure that you can’t fix it for them.
I took him to our doctor. He said he’d refer him to a pediatric neurologist, which might take a week or two. David had another seizure in the car on the way home. I didn’t go home. I drove straight to the nearest hospital and walked into pediatric out-patients! I grabbed the nearest member of staff and tried to explain and right on cue David fell to the floor having another seizure. Because of the noise he made and the fact he wet himself it was pretty dramatic and soon he was in a side room being examined by a series of pretty fascinated doctors. He stayed in hospital for about 3 weeks. He had scans, EEGs, all the usual stuff. We were warned it may be a tumour. When it was finally diagnosed as a highly unusual form of epilepsy we were so relieved that he wasn’t going to die. I actually cried my eyes out not because I was upset but because I was relieved.
He was started on medication. He has had so many different types but it was good old Tegretol Retard that worked eventually. He had several months completely seizure free. School was fine. Everything was fine. I got a new job in Singapore so we moved out there. We had a communal pool with our neighbours! Life was great. Till the seizures came back.
This time they were more obviously epileptic seizures. Not only did they come back but they were unpredictable. Sometimes tonic clonic, sometimes – in fact mostly- just the tonic without the clonic. Focal. Simple partial, complex partial. He heard noises sometimes which scared him. He injured himself on every part of his body. Worst was when he fell and had a tonic clonic on a broken plate and needed a long operation to reconnect the tendons in his arm which were sliced through. He’s had seizures on stairs, in the road, in mid-air as he’s gone to head a football. You name it.
He still was mostly the cheerful little guy he’d always been but sometimes he just lost his confidence. He never had a temper so when he just didn’t want to go out he’d sit on the stairs, lean against the wall, his face would crumple and he’d cry quietly. Some of his friends were scared away and there were a few parties he wasn’t invited to. Mostly though people were wonderful. Especially his teachers. David always loved PE and especially swimming. The school still took him swimming and one of the male PE teachers swam along next to him so he could still swim. When he was at his lowest usually some act of kindness from friends or even people we didn’t really know lifted his spirits and ours. We missed our family though and the NHS so eventually we came home even though my job prospects were patchy.
Life has been mostly centred around trying new drugs and you all know what an eternity it seems to take to come off one drug and introduce another. Again and again. He went through a dreadful time of having long auras which took the form of a feeling of intense fear. He’d sob, clutch things, break pencils, shake and it would go on for up to an hour and then he’d have a seizure and it would stop. Then it would start again! He was taken into hospital again and given high doses of something or other which did nothing but make him puke for days on end. The lowest point for him and definitely for me was during one of these auras he pleaded with me to kill him. As it always seems to go with epilepsy this period stopped as suddenly as it started and nobody knows why.
David is eleven now. After a couple of years during which his epilepsy seemed to settle down to being mostly tonic clonic and occurring maybe once every two or three days, about a year ago he entered his cluster phase. That is he’d never have one seizure he’d have a cluster, some of which didn’t respond to his emergency medication. This has been the phase of getting to know the paramedics by name. We had a few dramatic ambulance rides and two occasions when we nearly lost him. You know it’s bad when they run down the corridor with him on a trolley and don’t let you in! He was taken in for a day to see how he responded to buccal Midazolam and that luckily worked really well with just one or two exceptions. Mostly if we need the paramedics we can get it sorted at home eventually.
Earlier this year he was still on a mixture of Tegretol and Zonisamide but they introduced into the cocktail one of the new generation of drugs, Perampanel. I hardly dare talk about it in case it jinxes him but it seems to have worked. Since July this year he has had two clusters (just about 5 or 6 short seizures) and nothing else!!! He had a clear summer holiday in Finland and Sweden and swam, rowed, walked, had saunas, late nights and early mornings, which were always his worst triggers and not one seizure.
I can say that life is normal because this is our normality. I have a settled job, we had a fourth child (I know!!) and things seem good. I know the thousands of seizures he’s had and his medication have effected him. His memory is erratic, he struggles with sequences like months and days of the week, he struggles to write by hand, he used to be a good reader but now he reads a paragraph and 8 times out of 10 he has to start again. Lots of things like that. Yet he never complains, rarely feels sorry for himself and still has his sunny disposition he seemed to be born with. He loves his sport, still likes swimming if someone big is near him. I do worry about his future but what parent doesn’t and today’s been a great day so that’s a good start.
by Sue Perry
Tom was born a perfectly normal beautiful baby on 7th December 1993. For 5 months he developed in the same way as any other baby, and then he had a massive seizure lasting 40 minutes and was unconscious for 9 hours, we thought we were going to lose him. After that he had regular seizures every few weeks but was put on medication and continued to develop normally.
Tom started school at Staplehurst Primary School in the September before his 5th birthday and was doing well until he was 5 1/2 when his medication stopped working. For the next two years we went through a nightmare time while his consultant at Guys Hospital tried to get his epilepsy under control. We discovered that Tom was, and still is, very sensitive to medication changes. Each new medication would either not work at all, would work for a short period of time and then stop having any effect, or would make his seizures worse.
We would regularly do emergency dashes up to Guys Hospital after he had approximately 24 seizures, often before midnight after he’d gone to bed at 7ish, then I would stay in hospital with him, usually for several weeks at a time while they tried to stop his seizures and my husband would come to the hospital each day after work, it was a dreadful time.
My other two children were thankfully older, my son Chris was 15 and my daughter Kate 17, unfortunately Tom had to be our main focus, which was hard on them. This pattern of events went on for the next two years until eventually Tom was under reasonable control with a maximum of 7 seizures a night and taking 7 different medications. Unfortunately by the time he was ready to go back to school he had learning difficulties with behavioural problems, so Staplehurst School was no longer suitable for him and he was given a place at Bower Grove Special School in Maidstone.
He happily stayed at Bower Grove until he was 14 when they could no longer meet his challenging needs. It was then suggested to us that it would be in his best interests to go to residential school. This was the hardest decision my husband and I have ever had to make. We didn’t want anyone else looking after our little boy, or to have to trust anyone else to look after him, but we did it, and he went to a school that specializes in severe epilepsy called Young Epilepsy. He has now completed 4 years in the Young Epilepsy School and is in his second year in their college where he is learning valuable life skills. It has been really good for Tom, allowing him to mature and to learn to be as independent as he can be. He can now get himself dressed, clean his own teeth and is learning to wash his hair himself.
Tom will never be able to be independent as we know it. He will always need a high level of medical care as he still has seizures most nights, sometimes 6, and is at high risk of dying in his sleep due to a condition called SUDEP (sudden unexplained death in epilepsy). He will have to live in residential care for the rest of his life with 1-1 care for his safety during seizures and also due to his unpredictable behaviour; he can get quite angry at times.
At 15 Tom was diagnosed with Dravet syndrome a genetic condition which causes severe epilepsy. This is a fairly new condition discovered by Charlotte Dravet. There is (as yet) no cure, and no one really knows what the life expectancy is. One in 40,000 children has this condition and they all have similar stories to ours, some have died through this horrible condition, which is why my husband and I researched and developed Pulseguard.
Pulseguard is a new heart rate monitoring system, which will trigger an alarm if Tom’s heart rate rises above the perimeter that we set it at, Tom’s heart rate always rises when he has a seizure. But also it will set off an alarm if Tom’s heart rate drops so that we can get to Tom fast and try to prevent SUDEP. We want to safeguard Tom as best we can. Due to the success of PulseGuard for Tom we are now ready to share it with other families that are in a similar position to Tom.
Pulseguard is a system developed by a family for their son Tom, who has severe epilepsy. It is unlike any other system on the market, in the fact that it monitors and detects any rise and fall in the heart rate and if the heart rate goes outside the parameters you set, an alarm is triggered.
PulseGuard TM was inspired by Adrian and Sue Perry one morning in 2012 whilst reviewing the previous night’s video footage of Tom’s seizure activity.
Tom suffers from Dravet Syndrome and generally only has his seizures whilst he is asleep; Sue and Adrian have a seizure alarm under Tom’s mattress that detects movements during a tonic clonic seizure and an audible monitor to detect any gasps or noises during a seizure. They also have a CCTV camera above his bed head that activates recording during any movement so that they can review the previous night’s seizures, if any.
It was during the playback, they discovered that they had missed quite a prolonged seizure that occurred during the night where Tom’s movements were not enough to activate the under mattress alarm and he had his face buried in his pillow so no noise was picked up.
After seeing this they were very concerned, because Tom is at high risk of SUDEP (sudden unexplained death in Epilepsy) and needs to be monitored carefully. They realized they required a better system that would safeguard Tom. So they started to research further to see if a better alarm system existed that would give a warning if the same situation ever arose again.
After a great deal of research they discovered that there was no system on the market that could accurately detect the onset of a seizure in Tom so they decided to try and design their own.
They looked for one constant condition that existed when Tom had any kind of seizure and they remembered from a previous conversation with Tom’s consultant after he had had a telemetry EEG, where she explained that when Tom had a seizure his heart rate increased dramatically and was like that of running a marathon.
When Sue and Adrian couldn’t find a monitor to suit Toms needs, they decided to try and create a system that would detect Tom’s heart rate and transmit it wirelessly to a device that would monitor and provide an alarm if Tom’s heart rate increased or decreased, so that they would not only be alerted if Tom was having a seizure but also be given peace of mind in early detection of SUDEP (sudden unexpected death in epilepsy).
At this point they started to develop an app for Apple with the help from an American Neuro – Scientist, who was interested in the project and wanted to help in developing Pulseguard.
Later in the project, their son Chris came on board (an IT Engineer) who took over the final modifications to the App and their daughter Kate an (Emergency Medical Technician in the Ambulance Service) also came on board to help with the research and development and complete the family team that makes up Adris today.
After extensive research we settled on the current sensor device that straps to Toms Ankle or wrist and works by shining a light in to his skin that monitors the blood flow through the capillaries giving an extremely accurate heart rate indication which is then sent to the iPad app via Bluetooth technology.
After discovering that PulseGuard had successfully alerted on every one of Tom’s seizures with none missed and whilst talking to Tom’s consultants and other Epilepsy professionals and parents, it was very clear that a lot of other people were interested in having an alarm system that seemed to be as accurate as it was, so they decided to set up Adris Technologies (a family run business) to develop and market the system so that others can benefit from this technology.
We are due to launch to the UK public on 22nd September 2014, for more information, visit www.Adristechnologies.com. There is also a Kickstarter campaign set up to get Pulseguard to the United States. You can support this campaign here: https://www.kickstarter.com/projects/1182251268/pulseguard-pioneering-heart-rate-monitoring-system?ref=email
By Trish Hughes Kreis, Robert’s Sister
Robert is my youngest brother and has lived with uncontrolled seizures his entire life. He is physically and cognitively impaired and seems to have an additional diagnosis of a new problem every couple of months. He has gone from an energetic young boy who was able to graduate high school and even take a few college courses to living independently as a young adult to now needing full-time care.
Robert’s brain has been traumatized by two brain surgeries, numerous concussions and countless seizures. He was recently given additional diagnoses of Restrictive Lung Disease, Parkinsonism and Cumulative Traumatic Encephalomyopathy (CTEM).
After living independently and then a few attempts at living in an Assisted Living Facility and a Board and Care home, Robert now lives with me and my husband. This living situation is the best for all of us although with Robert’s declining mobility we may eventually need to place him in a facility that can provide him all the care he needs as his needs increase.
For now, my husband and I do our best to keep Robert healthy, happy and safe.
Sometimes it seems as if Robert loses just a little bit more of something all the time. Yet every time I am disheartened that he is in a wheelchair now more than he isn’t or that he is frequently in the hospital with pneumonia or getting a new diagnosis of Parkinsonism, I am reminded of his positive attitude and ability to make a joke out of everything.
Robert loves to laugh and to make others laugh with him although he hasn’t always been this way. In fact, he was a moody, withdrawn and angry teenager and young man. His uncontrolled seizures as well as the side-effects from his medications took its toll and Robert lashed out and was very unpleasant to be around.
This behaviour and attitude affected our relationship and I only talked to Robert on occasion – not nearly as much as I thought I “should.” He seemed to be stable living with a companion who also had epilepsy. Our dad lived in the same city as Robert and provided a little bit of assistance. Robert and his companion (whom he would have married if their benefits wouldn’t have been affected) spent their time taking care of each other, attending church and going to doctor appointments on their own.
Six years ago, it became apparent Robert was not making safe choices in his living situation and his memory was failing. He was forgetting to go to doctor appointments, fell prey to several financial scams, and even allowed a homeless woman to move in with him and his companion. Robert also developed a life-threatening infection during this time.
Time to step in!
Since caring for Robert, I have learned a great deal about Robert, my husband and myself. With regards to Robert, his faith never waivers and he never ceases to inspire me with his nightly prayer for his seizures to stop. Robert’s sense of humour keeps people smiling as he likes to joke about drinking whiskey or traveling to New York City (we live in California and, of course, he doesn’t drink).
My husband and I work well as a team and he continues to amaze me with his willingness to continue to help while dealing with his own chronic pain.
Robert has shared with me his belief that his purpose in life is to educate people about epilepsy. Robert had a near death experience as a teenager and has been extremely devout and devoted to spreading awareness ever since then.
I’m happy to be his “spokesperson” so we can help others in caregiving situations as well as spread awareness and education about epilepsy. I write our stories at www.RobertsSister.com and can also be found on Facebook and Twitter @RobertsSister1.
Robert, Richard and I will be doing a series of videos about epilepsy and the effect it has had on Robert’s life during Epilepsy Awareness Month in November. I hope Robert’s messages inspire others not to give up on a cure for Epilepsy!
About Trish Hughes Kreis:
Trish Hughes Kreis is a freelance writer and full-time Legal Administrator who advocates on behalf of her disabled youngest brother, Robert, in order to keep him as healthy and happy as possible.
Trish’s advocacy work includes working to expand the definition of family to include sibling care under the California Family Rights Act and Family and Medical Leave Act. Trish has also participated in a number of interviews on managing life as a working caregiver.
Trish is passionate about helping Robert fulfill his expressed life purpose of spreading awareness and education about epilepsy. However, she is on a no less important mission of keeping a steady supply of Jeopardy and Family Feud shows recorded for him as the simple things are what make Robert truly happy
by Caitie Shaw
I’ve written my story before. But I’ve always focused on the positive because I believe that’s the way to moving forward. Lately, I’ve noticed that while positive attitude is awesome it’s important to acknowledge the bad stuff, too. Especially when sharing with others who are suffering from Epilepsy.
The truth is every day is not a great day. I know that’s true for everyone but it’s different for people with Epilepsy.
For me I struggle with the constant worry that I’m going to have a seizure. Especially in social situations. And as a teenager that’s really tough to deal with on a daily basis. I’ve never seen someone have a seizure but I’ve seen videos of myself having a seizure and it’s not a pretty thing. Often I stop breathing. Then, I snort. Yes, snort. It’s not at all attractive. My eyes roll back. I go stiff and then I jerk around. A lot of times I also throw up.
Can you imagine doing that with a group of teens? How would you react? How would I react?
I’ve been really lucky because almost all my seizures have been with family. My little brother still makes fun of me having them but he’s my brother and that’s what he does. He loves me (even if he doesn’t show it). But what about kids I don’t know too well? If my own brother makes fun of me, I can only imagine how some people might react. I want to believe that they would be understanding but part of me is scared they wouldn’t be.
So my coping mechanism has been to stay home when I feel like I might have seizure. This has resulted in a LOT of missed school, not to mention missed parties and social events.
But this year I decided I was going to put myself out there and try to go to as many things as I can. Because staying at home so much is pretty lonely. I like being around people my age. I don’t want to miss out on all my teen years.
Even though I’m turning over this new leaf, it’s still very hard to work up the courage to go to these things. Every time I go into a new social situation, I’m scared. I have to force myself to go out the door.
Being an Epilepsy advocate and co-running this website means I read a lot of stories from people who have Epilepsy and too often those stories are sad. They are about bullying and stigma – at school, in social situations and at work. Sometimes even in their own families. It’s heart wrenching.
Even people who get through their teen years relatively unscathed have to deal with ongoing issues related to seizures: brain damage, side effects of medication, the worry that they won’t be able to have children of their own. And I wonder if my future will also be filled with such worries.
I’ve had a lot of good happen to me through my advocacy. I’ve made life long friends, I’ve won a national youth award from Canadian Living and Me to We, this website is even a finalist for a world-wide award. But the shadow of Epilepsy affects my life every day. The challenge is to not let it win.