Speaking Up About SUDEP: Two Mothers' Stories

Sudden Unexpected Death in Epilepsy, or SUDEP, is the most devastating outcome that can occur as a result of epilepsy. Yet, physicians often avoid discussing it with newly diagnosed patients. Doctors may not wish to upset patients who may already be experiencing the stress and uncertainty that comes with a new epilepsy diagnosis, or they may feel that the risk of SUDEP is low and thus not worth scaring the patient. However, new data indicate that SUDEP occurs in approximately 1 in 1000 adults and children with epilepsy. Guidance regarding risk factors for SUDEP and possible ways to mitigate these risks is available. Yet, if information about SUDEP is not shared with patients and families, they can’t make choices to reduce the risk.
On this episode of Seizing Life, Libby Boyce and Jessica Brandes, two mothers who each lost a son to SUDEP, discuss how they hope to transform tragedy and grief into action and change. Libby Boyce’s son Cameron passed away from SUDEP in July 2019. He was only 20 years old. A month later, in August of 2019, Jessica Brandes lost her 8-year-old son Wiley to SUDEP. Neither family had been told about the risk of SUDEP.
What should a patient be told about SUDEP? Libby and Jessica tell their stories, discuss what they were and weren’t told about their sons’ epilepsy, and outline what should be done to build awareness of SUDEP in both the epilepsy and medical communities. Gain perspective on this very difficult, but critically important topic from two moms who want to bring an end to SUDEP through awareness, change, and research.
For more information about epilepsy, SUDEP and what is being done to find a cure, please visit CURE Epilepsy's website: www.cureepilep...

[@CrazyCatLady-dx8uj]

I agree totally! I lost my son on 6/17/99, he was just 20 years old. Thankfully our coroner knew about Sudep. Not one of my son’s doctors ever told us about it. Neurologists need to have conversations with their patients and loved ones. Coroners need to be properly trained about catching it. Thank you for bringing awareness!!

[@Ilhame_al]

I had last tuesday I got a stupid seizure in my home but my parents was with me I was 3 years old when I got my first seizure unfortunately now I become next month I will become 23 and I take 2x per day my medication so I hope also that I never would be developed Sudep🙏🏽🙏🏽

[@debratownley3688]

Thank you for doing this. My heart breaks for you Moms. My 24 year old son was dxd today and we were warned about SUDEP and told to start meds NOW. He had two seizures, the first of which landed him in the hospital with organ failure. He has recovered, but was not put on meds until today, two months after organ failure. And then today they accidentally ordered his script thru mail order and would not change it so he could start it NOW. It's so strange to be warned about SUDEP and then not having him on meds NOW. I will be awake until it comes in the mail. Thank you again for sharing this important info.

[@g-baby1581]

we well all mis cameron boyce i love wacthing his shows and movies

[@amberbamber2646]

I have epilepsy myself. I was diagnosed when I was 5 and I am now 24. I didn’t know SUDEP existed until I heard about Cameron Boyce. I lost a family member to SUDEP in December 2019 and I know what you guys are going through. Knowing that I could go to sleep and not wake up again is a little scary but I have been seizure free for almost 6 years and I’m hoping it will stay that way!

[@Lilliecwalinski16]

We’re the same age then. I also had childhood Epilepsy!! I knew it could kill, as with swimming, or around water. You can’t leave an Epileptic alone in a swimming pool, cause they can drown. I knew that. But I didn’t know about Sudep!!

[@Ilhame_al]

I have also epilepsy I was 3 when I got my first seizure and I was also 3 when I got my diagnosed and the doctor the gave my mother already my first medicine my mother gave me everyday my medicine and sometimes it as a child I often spat my medicine out because I also found it difficult to take my medicine it was not for me already and I still gross🤮 I still glad that I have a good doctor🙃 every month he would call me for asking if everything be great

[@kimberlymisfit3544.]

My son passed away from SUDEP ,on October 13th,2021 at 18.He was nonverbal autistic n was NOT diagnosed with epilepsy. He had 2 seizures in his life,0ver 6 years apart.He was my best friend So sweet n everyone that met him for 5 seconds fell in love with him..❤❤❤It took over 4 months for autopsy report n they didnt put SUDEP as the cause.I had really no ideas about seizure.#puzzlepiecessquared

[@theway3660]

You can get a seizure monitor that you wear like a wristband. It will notify your caregivers iPhone. It has been such a blessing!

[@robertdeffenbaugh9004]

I was diagnosed with Photosensitive Epilepsy when I was 2 years old and had my Seizure Tumor surgically removed when I was 8. I’m 30 now.

[@richardjanssen3538]

I have epilepsy and it scares me

[@dorinda9677]

Keep fighting and live life to your fullest

[@richardgardiner9597]

Our 24 year old daughter died in Feb 2024 from what we suspect is SUDEP, but we'll never know for sure because in their infinite wisdom, the coroner did not order an autopsy....probably due to underfunding. Their report is still not final. SUPED must be better understood!

[@sweetlife031]

1:46. 8:42, 14:58, 22:27, 27:07, 27:32, 28:41 💗❤ Gets me every time 💔🤍

[@emilybell1988]

When you get down to it tho, the reality is that you never know what /when it happens. No matter how much information, training, etc... there’s only so much that can be do. Drs can only do so much...

[@selmajohnson-jackson3906]

I’m a mother of son who died from SUDEP . I want to know what can I do? In my own city’s Pittsburgh, PA PLEASE, PLEASE TO MAKE DIFFERENT TO STOP EPILEPSY SUDEP ONE SOUL AT A TIME!!!🧠🧠😢 please reply me

[@margaretwilliamson2018]

My daughter shania passed away the 7th may 2022 she was only 22 she died of sudep i had never even of it until I got the coroners report back 😢 the drs here in new zealand dont even know what it is my daughter use to watch the shows with cameron on them and i remember her saying to me he had passed away of epilepsy 😢

[@sofiaudisho2751]

How can I connect with families that have lost a child due to SUDEP? I did not know about SUDEP I just heard about it because I lost my 19 years old daughter on March 2 2021. I am really desperate to meet and talk to mothers that have gone through what I am going through.

[@hannahpaigebarnett]

I lost my almost two year old son this past September of 2021, and I just was called yesterday to pick up his death certificate and the cause of death is SUDEP. I am incredibly unsatisfied with the answers, very livid with doctors for never even warning me about it, and am in the process of doing my own research.

[@sofiaudisho2751]

@@hannahpaigebarnett thank You for sharing do you live in Toronto?

[@OscarFlores-lf2gg]

So sorry to hear that i lost my partner she was only 24, 3 more months and she would have been 25. I miss her so dearly very much. It happened sep 28 2022. covid really made her epilepsy worse and i believe it was dormant and covid just made it turn on

[@samanthamiles4397]

My biggest fear

[@samanthamiles4397]

When I asked my sons neurologist about this and handed him a folder from Danny did about sudep he said it may be bad but it's because moms like me who will stress over it. He has only lost 1 patient from it out of all he has . He is the head of neurology at our hospital here and I feel so stuck . He refuses anymore testing or anything else .

[@g-baby1581]

omg 8 yarrs old