Our 13 year old son Bentley passed away on April 26th. He was found deceased in his bed that early morning.
In December 2023 after his first seizure, He had a EEG performed in April 2024 and was diagnosed with BECTS.
After two different anti-seizure medications that caused horrible side effects, his specialist made a decision to take him off and only continue with magnesium in October 2024
Meanwhile he was struggling with severe migraines, his BP was constantly up & down, chest, ear and eye pain with pressure and fast heart rate. After three different ER visits he was referred to cardiologist. They stopped seeing him in January 2025 due to no reason for hypertension.
Every conversation we had with neurologist with these concerns, we were reassured that Bentley’s epilepsy was to come and go in his teenage years.
Never once in office, email, patient portal, or phone conversation were we told about SUDEP and the risks, dangers, or even pre cautions to take since they were also nocturnal seizures.
I would have never allowed him to stop medications, I would have pushed to try other brands. Why isn’t there brochures or posters in office about SUDEP? We were so clueless this existed, and now I have to carry that quilt for the rest of my life
My heart is truly broken for you to lose a child whatever age should just not happen , please do not feel guilty we go by what we are guided .
I lost my husband suddenly to a heart attack 19 months ago , the only family I have left with me in Devon is my only child my 29 year old son .
Right now he is in hospital for the second time with a collapsed lung , the first time my husband was around , on Friday they took him in to resus where they took my husband , my anxiety was overwhelming.
Right now I can’t help but think it was my idea to go out to the Christmas market with my son it was very cold , and on the way home walking up the hill he felt the sharp pain and there it was again !
He is 29 but he is all I have here my family are all 265 miles away up north .
Hearing your story of a 13 year old who had his whole life ahead of him , and your saying you feel guilt , I get that I truly do, but you have already been punished by losing your son, don’t please add to that by adding guilt to it, you did what you were guided to do . Your story touched me x
I too lost my daughter Elizabeth aged 31yrs to SUDEP on 9.4.25. I found Elizabeth on her bedroom floor in her flat.
I will never get over that scene that morning and never be same person again.
I have also wondered why SUDEP is never mentioned at appointments. When I spoke with Elizabeth’s consultant after t her funeral he said that its a difficult conversation to have as people worry. Well if your like me I’d rather worry than have to bury my beautiful daughter.
When i feel stronger I going to look into making SUDEP compulsory to be spoken and warned about.
Im here if you ever need me to talk to.
Its a club that nobody wants to join but we are now Angel Mummy’s
I’m heartbroken for you for the loss of your precious son Bentley. I lost my son last year suddenly and unexpectedly from Sudep. James was 31 and had only been diagnosed with epilepsy 6 months before we lost him. James died alone, a thought that haunts me. The guilt we feel comes from the love we gave them. Life let us down, you didnt let Bentley down. Please know that you are not alone. Reach out anytime.
