SUDEP: Sudden Unexpected Death in Epilepsy

This post is intended to reach families affected by SUDEP. An important survey is linked at the bottom. If you know someone who has lost a loved one to SUDEP, please share this post with them so they may contribute.

As a parent of a child with epilepsy, I can tell you that this is something that scares me to my core. Charlotte has had epilepsy her entire life, and it was not until she was about 5 years old that I first learned about SUDEP. We were already terrified of her having seizures at night, and the knowledge of SUDEP was almost enough to tip the scales of our mental health and sleep quality towards total dysfunction. But this knowledge also did something else for us, it was the impetus for us acquiring monitoring solutions to help alert us at night if she was having a seizure or other medical problems.

Monitor for Seizures

The first monitoring device we purchased was the Emfit Movement Monitor, which provided immediate peace of mind. I am forever grateful that we were able to buy this device immediately, without having to jump through insurance hoops. This is a large sensor that is placed under a mattress and it is designed to detect repetitive or prolonged movements, such as a seizure. The alarm will sound after a set threshold, alerting parents or caregivers. We used the Emfit for about 5 years and eventually passed it onto another family in need after we acquired a secondary monitoring device.

Our insurance eventually provided a pulse oximeter. A pulse oximeter measures your heart rate and oxygen saturation using light. Charlotte has been wearing a small sensor similar to a bandaid on her small toe every night since we received the pulse ox. She is now almost 16 years old and continues to wear this without complaint. We have the settings set to alert (beep loudly) if her oxygen saturation dips below 95% or if her heart rate exceeds 130bpm or falls below 60bpm (please note: everyone’s numbers will be different). While the pulse ox does not alert for unusual movements, it does provide us enormous peace of mind. We can hear the monitor beeping through an audio baby monitor, which we use in combination with the pulse ox. This is an important factor for us, because we all sleep better when we have our own beds! Sleep quality for health is top priority in our house, for all of us.

Recently we have added Overwatch Seizure Detection which is a software program designed to be used in conjunction with an Apple iWatch. It’s too soon for me to share an opinion on this device, but I will update once we have spent more time with it!

I personally encourage the use of monitoring devices for anyone with epilepsy. The devices I have described above have provided peace of mind to our family, and on more than one occasion alerted us to seizures or illness. But you must remember that nothing is 100% foolproof, and does not replace appropriate supervision. We never let our guard down.

Please visit the Danny Did Foundation for SUDEP information and types of seizure monitors.

Guardian Angel

Charlotte absolutely loves all the Descendants movies (learn about her photosensitivity and how she safely watches movies here). Carlos, son of Cruella de Vil, has always been her favorite character. She has a poster of the cast from Descendants 3 right next to her bed, and she often tells me how much she loves it (she thinks it’s very teenager-ish to have posters in her room). Sadly, Cameron Boyce who played Carlos, passed away from SUDEP in 2019. I’m not even sure if she is aware of this, and I’ve struggled for a way to explain this to her on a level that she can understand. It’s a very confusing and complicated topic for my husband and I to navigate. While she is aware that she sleeps with the pulse ox to “keep her safe” and alert us if the is having a seizure, I’m not sure if she is able to comprehend the reality of her own risk for SUDEP and that her favorite movie star left this earth far too soon due to the same terrible, haunting, acronym for which she is marked, “high risk”. I like to think her affinity for Cameron is something beyond our understanding. In physics, we know from thermodynamics that energy cannot be created nor destroyed. It simply changes states. I believe Cameron’s energy, his light, is still here; a guardian angel to Charlotte and millions of others at risk for SUDEP. Cameron’s parents have established the Cameron Boyce Foundation, and I hope you will check out the important work they do in honor of his legacy.

Prevention

Each and every time I hear of someone who has passed away from epilepsy related complications, my heart shatters. Both for the life lost, and the family and friends left behind. While the risk for SUDEP will always be there, I feel as though we may have the ability to prevent it in the future.

Awareness of SUDEP is step one. Monitoring and safer sleep arrangements are step two. Prevention is step… long overdue. It does not exist. But that does not mean it’s not possible. Quite simply, the best way to prevent SUDEP is to not have seizures.

Epilepsy is a particularly complicated medical diagnosis because of the thousands (maybe even more) reasons why you could have it. So if you can cure epilepsy, you can cure SUDEP. There is wonderful, ongoing research happening, all working towards this same goal. If you are following this blog, you may already know how passionate I am about the ketogenic diet (which is how we prevent most of Charlotte’s seizures) and my work with the Charlie Foundation. Each time I attend AES (American Epilepsy Society), PAME (Partners Against Mortality in Epilepsy), and other conferences, I am blown away by the ever evolving science studying epilepsy and SUDEP.

The Survey

My friend Kristina Simeone, is a basic science epilepsy researcher. Kristina studies mice with a genetic mutation associated with human SUDEP. I have found her knowledge in the field of SUDEP equally intriguing and comforting. We have shared many thoughts and conversations on this topic as well as others. In particular, we have often discussed the deep connection parents have to their children. The “gut feelings” parents feel, can’t explain, yet often act upon. These discussions led to a collaboration between myself and Kristina to design a survey based on those indescribable, yet powerful parental instincts.

• Waking up in the middle of the night when you usually would not, to check on your child who is sleeping soundly, yet finding they have a fever.
• The tone of their voice, despite what they are actually saying, tells you there is something wrong.
• Obsessively checking for rescue medication when you know you have it, then a seizure follows the same day.
• A feeling comes over you, stopping you in your tracks because you “feel” something is wrong.

After all, mothers inherit DNA from their children when they are pregnant and this DNA can remain present, a part of the mothers body present in every organ system, for the rest of her life. It’s called microchimera. Does this help explain the unique and powerful bond between a mother and her child? Mom on a mission. Tiger mom. Dr. mom. Helicopter mom. Whatever you call her, don’t get in her way! And definitely don’t tell her she’s wrong (or dad either!).

As a researcher, Kristina is looking for “unnoticed” changes that may occur prior to SUDEP including sleep pattern changes, energy, seizures, and more. Often, only parents or direct long term caregivers notice these types of seemingly benign, or insignificant changes, but do not immediately connect them to a larger concern. Or if they do mention these changes due to concern, there is no way for a doctor to quantify them as anything significant. But what if there is significance and these small changes are just as important as a major illness, injury or pharmaceutical change? What if our instincts as a parent can tell when something is “off” and the awareness of them can lead to preventing tragic outcomes? Currently, no other SUDEP research has asked these questions.

I am proud to be a small part in the quest to prevent SUDEP by helping Kristina design this survey. I HOPE that we find no one to answer it, but sadly, we know that is not the case. Please know that if you do answer this survey, Kristina and I are giving you the biggest, tightest, virtual hug possible.

~Dawn Martenz

SUDEP researchers at Creighton University are studying the experiences and perspectives of people who have lost a loved one to SUDEP, and I am sharing this survey to advance their efforts. The survey focuses on you and your loved ones’ experiences prior to SUDEP. Understanding details about what you and/or your loved ones may have noticed can help researchers better identify potential signs or warnings. Your answers will help to steer future medical studies that can predict and hopefully prevent SUDEP for other families. Below is a link for the survey, which will take about 5-15 minutes to complete. We realize this is a big request, and we appreciate your consideration.

• Your answers are anonymous. However, if you’d like to dedicate your responses to your loved one, there is a space for that at the end.
• The data will be made available to researchers in spring 2021.
• Your participation is voluntary, and you can withdraw at any time. The survey does not ask for personally identifiable information.
• Since you are asked about your memories of SUDEP, emotional risks may occur. If you experience distress, contact your healthcare provider, mental health expert, SUDEP support group or hotline 800-322-1000 (en Español 866-748-8008), or call the depression hotline support group at 800-828-3632.
• There are no benefits for completing this survey. If you would like to review your Participant’s Bill of Rights, click here.