–Sandhya Narikuzhy, August 21, 2020
Disclaimer: While this information may be hard to read, it is not meant to scare or discourage you. My goal with this short article is to address the facts and challenges associated with SUDEP, while also highlighting the importance of knowing the risks of SUDEP. I strongly encourage you to have these difficult discussions at home as well as with your healthcare provider. The information below is for educational and informational purposes only. It is not intended to provide medical care or other professional advice, nor is it intended to be used to diagnose or asses health conditions, or to be substituted for professional guidance in treatment.
Tomorrow is a new day. The uncertainty, unknown, and unfamiliarity of “tomorrow” can be exciting at times. However, for individuals living with epilepsy, tomorrow may strike the opposite emotion.
Sudden Unexpected Death in Epilepsy (SUDEP)
Despite its importance, no one ever likes to talk about SUDEP – Sudden Unexpected Death in Epilepsy. SUDEP is classified when the death is unrelated to injury, drowning, or any other known cases (CDC, 2018). According to CDC, for every 1000 people with epilepsy there are approximately 1.16 SUDEP cases.
What causes SUDEP?
Perhaps the most difficult SUDEP fact to process is that there is no exact known cause for SUDEP. Why is the cause unknown? One possibility could be related to SUDEP commonly occurring at night or when an individual is asleep. This makes it more difficult to identify if an individual experienced a seizure prior to their death. Additionally, the evidence associated with SUDEP may be limited (i.e. not all SUDEP cases have evidence of seizures before death).
Although there is no exact known cause, research has shown that several factors can contribute to SUDEP. These factors include but are not limited to difficulty breathing, lack of oxygen, abnormal heart rhythms, cardiac arrest, and seizures. The strongest risk factor for SUDEP is having frequent generalized tonic-clonic seizures at night. The more frequent the seizures are, the higher the risk. Thus, the best way to reduce the risk of SUDEP is to have as few seizures as possible. With this in mind, it may be worthwhile to ask your doctor if you or your loved one may be at risk for SUDEP. In this way, you can follow up with questions to ensure that you are managing your epilepsy to reduce the risk factors that can cause SUDEP.
For more information on SUDEP please visit: SUDEP Aware
Should individuals be aware of the risk of SUDEP?
Every individual living with epilepsy and their families should be aware of the risk of SUDEP.
Mark Stevenson and Thomas Stanton are two fathers who have lost their child to SUDEP. To make matters more challenging, they were only aware of the risk of SUDEP following their child’s death. To prevent this terrible experience from happening to others, both Stevenson and Stanton wrote an article called Knowing the risk of SUDEP: Two family’s perspectives and The Danny Did Foundation. In their article, both Stevenson and Stanton highlight their own experience of finding out about their child’s death.
Although it is hard to hear about the risk of SUDEP, both Stevenson and Stanton wished they had known about SUDEP prior to their child’s death. In this way, they could have done everything in their power to protect their child. Learning about SUDEP only after a child’s death is probably every parent’s worst nightmare. When parents of children with epilepsy are unaware of the risk of SUDEP they are left helpless and powerless to help their child.
To read Stevenson and Stanton’s full article, please visit: https://onlinelibrary.wiley.com/doi/full/10.1111/epi.12795
So, although talking about SUDEP may cause individuals to worry, it is incredibly important to be aware of this possible risk. When neurologists or general physicians hesitate to tell individuals of this risk, they are robbing individuals the opportunity to be proactive.
Carter’s Epilepsy journey began just after he turned six years old. We heard a strange sound just after midnight, which we thought was the dog, but discovered it was Carter. We didn’t know what was wrong with him or if he was even alive. He was drenched from sweat and his whole body was limp. We called 911 immediately and that is where the adventure began for us. He was transferred from Lakeridge Health Oshawa to Sick Kids Hospital within an hour, and we were told to inform our family of what was happening because the doctors weren’t sure of the results. At Sick Kids Hospital, they ran every test they could think of and Carter was still not awake. No one would tell us what was going on, if he was going to survive, what was wrong... we were just in limbo, waiting. It felt like a lifetime had passed before they realized he was in a seizure.
Before Epilepsy became a part of our family, we were like everyone else, and thought that that after Carter’s seizure he would bounce back to “normal”. Little did we know that Carter had been having seizures since birth and they were just going unnoticed. Carter has both focal and clonic/tonic seizures. He has right, left, and front brain damage which makes it difficult for him to learn. After that night, everything began to make sense; it explained why Carter would know colours and numbers one day, only for it to be as though he had never seen them the next day. I had taken him to the doctor multiple times to discuss my concerns with this and the doctor would tell me that he was an “active boy”.
Cater has faced many challenges with doctors and at school. I would take him to the neurologist and explain Carter’s behaviours and reactions to medications. It wasn’t until Carter demonstrated symptoms – the blank stare, twitching, and repetitive speech – at the appointment that the doctor believed me. We were sent for our first week long EEG where they discovered that Carter’s brain was more active when he was sleeping than it was when he was awake. They had to “reset” his brain, which meant back to Sick Kids Hospital for another week, high doses of medications and praying that this would help him. Luckily, it did, but the challenges continued.
Carter has changed medications many times; he has either outgrown them, the side effects were too much for him, or they just weren’t right for his type of Epilepsy. The medications make him feel exhausted and cause him to sleep all the time. At school, no one understood Carter’s memory issues or understood why he would have to ask for instructions to be repeated. He would be having focal seizures multiple times a day that were going unnoticed. It was thought that Carter was misbehaving which wasn’t the case. It felt as though he was being punished for something he had no control over.
I have fought so many battles and have had many challenges with Cater, but I will not stop – he is my son and I love him with all of my heart. I will never underestimate him. I have made it my mission to make people understand my son, no matter what it takes. We are so grateful for the strong support that we have from friends and family, and also from our local Community Epilepsy Agency. Epilepsy Durham Region helped me to find the strength to fight these battles and without their support I do not think I would have the mindset or knowledge that I have. Both Chelsea and Dianne at Epilepsy Durham Region have been my shining light. They have helped me to work with the school board to ensure Carter is better understood and has a plan for success, helped us to find an Epileptologist that fits our needs, and have been a shoulder for me to cry on.
Carter has taught us so much. He sees the world differently than us, and he has taught us to take time to see the smaller things in life! We have decided that we want Carter to live life and not let Epilepsy rule his life. We know that he does have limitations as to what he can do, but we let him live!
- Julie, Carter's Mom
Hiiiiiiiiii! My name is Ava and I am an Epilepsy Durham Region Youth Ambassador (you can see some of my work on my very own ambassador page here). I am 10 years old and am excited for you to hear about my Neurology Epilepsy Monitoring Unit (EMU) 5 day hospital stay! This EMU visit will help doctors and me and my family understand more about my seizures. I hope you enjoy discovering epilepsy through my journey!
October 7th, 2019 | Day 1 of 5
The struggle is real for Ms. Ava tonight. Weaning off her medication makes her feel off and has caused some nausea. We were up at 5:15 am and have to stay awake until 11:00 pm, the IV is hurting, probably some cabin fever, and now she has to have heart monitors on for the night. There are more cords and wires than ever before. She is fading and wants to sleep but we are down to our last hour of the day. She is a trooper but my heart breaks for her as I am sure it is overwhelming with all of the unexpected and additional tests.
Tomorrow is a new day and I sure am proud of her. She has a lot of new books and toys to help her keep her mind busy and we are grateful to Epilepsy Durham Region for the amazing care package they provided.
Cindy, Ava's Mom
October 8th, 2019 | Day 2 of 5
Yesterday was day 2 for Ms. Ava. Thank goodness for all the hospital volunteers to help her dad and I when we are there separate from one another so that we can go get some food. With Ava not being able to leave the room, it means neither can we and Ava gets bored of us – who can blame her 🤣. The hospital volunteers have been fabulous and she has so much fun with them from playing hang man, go fish and other games.
Ava received another lovely surprise from her family at Epilepsy Durham Region which is soft and cuddly to keep her company.
She had another late night, and worked on some math for school and FaceTimed her friends and family.
The IV is still her nemesis, and causes the most discomfort, except at night as she was hooked up again to the extra monitors for heart and blood pressure along with the EEG electrodes. She was asked to stay up extra late in hopes of have her becoming sleep deprived which will often cause a seizure.
We are so proud of how she is handling it and know it cannot be easy.
When we asked what her favourite part of the hospital stay is? Ava said having the therapy dogs visit.
Meet Benji and Ben💜
Thanks again for your support,
Cindy, Ava's Mom
October 9th, 2019 | Day 3 of 5
Ava has not very much sleep again last night as they are trying to induce a seizure. She finally was able to go to sleep after 12:30am and was woken up at 7:00am.
Yesterday she had a a long visit from her Aunt Emily which was wonderful for everyone. She painted Ava’s toes, played hangman and brought the funniest game called Mad Libs.
During Ava’s visit with her Aunt she also had another visit from a furry friend and they had some long snuggles.
Meet Piper below!
With all the wires Ava needs clothes that zip or button up so she was excited because she received some comfy onesies to keep her cozy.
When asked what are some must haves when coming into the hospital for a long stay she said:
1) Her stuffies (Puzzels, Bibbles, Pixel and her pillow Karina the cat). She will also include her new ones Tundra and Misty.
2) Her green and pink blanket to snuggle along with her handmade blanket from her Aunt Susan to keep her warm.
3) Oreos, salt and vinegar chips and goldfish crackers 💜
4) Apples and oranges (so she can eat the chips 🤣 )
5) Her new favourite game from Epilepsy Durham Region called Crack the Code
7) Her IPhone
8) Comfy clothes
9) Playdough (thanks Cousin Carla)
10) Mad Libs (thanks Aunt Em)
Today she is hoping to another furry friend visit and play Royal High on Rodblox! (Mom is not allowed to say school work even though she has that as well😁)
Thank you everyone for joining us on her journey.
See you tomorrow,
Cindy, Ava's Mom
October 10th, 2019 | Day 4 of 5
Today is day 4 and Ava is extremely tired as there was one last attempt to sleep deprive her in order to induce a seizure. She stayed up into the early morning and was woken up after a few hours sleep.
Some of the questions Ava gets asked are why is she in the hospital for 5 days, why do the doctors want her to be sleep deprived, what kinds of tests and monitors is she having?
Having epilepsy, it is so important to have an understanding as to where the seizures are happening in her brain and if there have been any changes over the year(s). Having all of the information collected at the Epilepsy Monitoring Unit (EMU) helps the neurologists understand where the activity is located in the brain and type of epilepsy. This way they can provide a treatment plan from what types of medication will work best, to how much of each medication she should take. For some, and EMU visit can lead to discussions on whether surgery is an option, but not in Ava’s case.
For this hospital stay Ava has the standard EEG which is all the leads you see attached from her head into the machine in the room, an IV port in case she requires recovery medication, heart monitors at night as well as an oxygen and blood pressure sensor.
Today Ava received a very thoughtful gift from one of our Epilepsy Durham Region moms, Danica. Danica made a special visit all the way from Durham Region to surprise Ava with some beautiful slipper socks as well as a stunning owl necklace. We are amazed at the community and connection Epilepsy Durham Region has made. The support system is not only for the parents but for those living with epilepsy like Ava who have built friendships and became confident about their condition to become epilepsy ambassadors.
Ava also received a visit from her godmother, Rana who brought her favourite snacks (salt and vinegar chips) and played some more hang man with Ava (and I think promised to take her shopping🤣).
Tonight, Ava was able to go to sleep earlier and has started back up with her medication.
A couple bright spots in her day were seeing the pictures from the DRPS K-9 calendar launch AND listening to her friend Terry Johnston at CKDO radio interview her dad about her journey and the launch of the calendars.
We have one final blog before we leave, so please stay tuned!
Cindy & Ava
October 11 | Day 5 of 5 and Ava’s home!!
Well, Friday was the last day Ava spent in Sick Kids and she could not wait to get disconnected from the machines, have the IV removed and all the leads taken off.
The nurses and neurologist at Sick Kids were so amazing during her stay that we cannot say enough about how wonderfully she was treated.
She slept in until the nurse brought her medication in and even then, kept falling back asleep as it was an exhausting week for her. She ordered her daily breakfast of pancakes and hash browns and by 10 a.m. had everything removed. She had a quick shower to try to get some of the glue out of her hair and forehead but wanted to explore the outside after being cooped up all week.
She was given one final bravery bead which was a gold heart for being so strong and she now has over 50 in her collection.
As we left, Ava became lightheaded and dizzy. She sat on the floor to rest with some water in the lower lobby of the hospital but with some liquid and salt she was ready to go. This is unfortunately one of Ava’s challenges – even the neurologist said how Ava looks so healthy and normal, no one would think she has epilepsy. This is the stigma of living with an invisible disease.
She was so excited to get home and see her dog Ollie and get some snuggles. She slept 11 hours last night and is singing away this morning and playing.
We cannot thank everyone enough for all their support in keeping her entertained, smiling and for listening to her journey.
Glad to be home where Ms. Ava belongs ❤️💜
Cindy & Ava
When it comes to service dogs, it is important to be properly educated on their role in the community. They are trained to keep their owner with a disability safe and protected at all times, particularity when they need immediate attention. When a person has epilepsy, they may choose to have a service dog to help them in the case of a seizure.
To begin, most service dogs are not able to tell when a person is about to have a seizure; however, they are able to protect an individual when they are having one. There are multiple ways that a service dog may respond to a seizing person, which depends largely on the situation. This can include: the dog may choose to stay with the individual, may be trained to retrieve medication, may alert the nearest person or their caretaker or can activate an emergency call system (Service Dogs 1). Regardless of the response protocol of the service dog, it should be noted that this is what has been decided is best for the seizing person and what the animal has been trained to do.
It is also crucial to be aware that if any service dog approaches you, they are asking for help. It is likely that the dog will come up to you and will be barking as their way of getting your attention. This means, that as a Good Samaritan, you should call emergency services and tell them that a person requires immediate assistance. This is particularly important in the case of a seizure, as time is of the essence. Also note that the service dog is not trying to scare you, bother you, or ruin your day; they are simply trying to help the life of their owner, who could be is serious distress.
Ultimately, all service dogs will identify with a vest that says they are a service dog. This means that there should never be any confusion between them and average dogs on the street. Thus, if a service dog approaches you, please stop and call emergency services as someone may truly need your help.
Thank you for learning more about your community service dogs! See you next week.
For more information about whether a service dog may be a good fit for you and your family, please visit: Lions Foundation of Canada Dog Guides
"Service Dogs". Epilepsy Ontario
As a person with epilepsy, I often get told to hide my disease. I get told to make sure that I do not tell my employers or that other people do not know; unless they truly have to. Well, if I spend all of my time hiding my disease from everyone, why should I be expected to disclose it to random strangers on public transit?
Evidently, this logic does not make sense. I believe that the whole purpose of this initiative was to showcase invisible illnesses; however, people will still never be able to understand what they cannot see. This means that regardless of whether or not a person is wearing a button, people will still not give up seats because they cannot see that anything is physically wrong with the person.
I truly do not think that having a button is required as it simply sets disabled people aside from abled bodies. This makes it easier for people without a disability to pick on others and victimize those with one. The Canadian Epilepsy Alliance feels that this is a great idea; however, most people are not comfortable sharing their diagnosis with others. This button is a very blunt way of sharing their disease with everyone, which is really unnecessary.
I believe that we should be taking the initiative to educate the public about invisible illnesses and to give up priority seating to anyone who requires it, even if they may not look like it. Education is more important than taking the easy route, which in this case, makes it harder for the people who already have a hard time living with these conditions on a daily basis.
What are your thoughts? Talk to you next week!