S.U.D.E.P. Sudden Unexpected Death in Epilepsy

Posted by Leonard @jakedduck1, Jan 20, 2020

I know this wonderful lady Julie and her husband Jon who have been bringing attention to this horrible condition in England. Her daughter Hazel was only 17 years old. This is a deadly complication of Uncontrolled Tonic Clonic (Old term, Grand Mal) Seizures. Many doctors refuse to inform patients and parents of this deadly possibility. S.U.D.E.P. usually occurs after a Tonic-Clonic seizure but not always. It’s theorized that it has something to do with respiratory arrest.
0.3 to 6 deaths of SUDEP per 1000 adults with epilepsy and 1 death per 4500 children. SUDEP accounts for 8–17% of deaths in people with epilepsy.
It has recently come to light the many bathtub drownings are actually associated with S.U.D.E.P.
Here is Julie,

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

@jakedduck1 - S.U.D.E.P. Sudden Unexpected Death in Epilepsy is just a heartbreaking occurrence. Have you seen this happen with anyone you have known personally?


Fortunately I have been spared witnessing seeing it actually occur in person. Julie and her husband Jon parents of Hazel, the 17-year-old girl above and I were very good friends although we never met in person, we frequently communicated and we were on the same forum before it was closed down after about 15 or more years.
I can understand a little bit about how horrible it must’ve been for Julie to find her daughter in bed deceased since the same thing happened to me but with my mom. But I guess it’s a lot different when a mother finds their child.
I knew a man who lived in Arkansas and we had plans to meet in 2009. I had all my travel plans made and was just waiting for my travel date and I got a telephone call from his son. He had just died. It’s not clear if the cause was S.U.D.E.P. or if it was Convulsive Status Epilepticus. What rips my heart out is that his grandson had just been born and when he got old enough he called me up one day and he said “Will you tell me about my grandpa.” He’s 10 years old now and it still tears me up when he calls. I asked the forum powers that be if we could have a Memorial section, they agreed and I wrote a tribute for Michael and a couple of others. You’re so right Lisa, it is heartbreaking i’m so concerned about Julie who still has intractable epilepsy with frequent 20 minute seizures. Because of all of her risk factors she could also suffer the same fate as her daughter.
Thank you for your contribution Lisa,
Jake fortunately I have experience with seeing it

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