SUDEP

Posted by cmackia2020 @cmackia2020, Aug 21, 2021

My 13 year old son died May 2020 from cardiac arrest. He was diagnosed with epilepsy. After doing research this year and talking with other parents who lost their children to epilepsy, SUDEP was never mentioned in any appointments. Why is this deadly disease not mentioned in doctors consultations? No, we did not bring our son up to Mayo as we never had the opportunity. He was diagnosed with epilepsy in February 2020 and died May 2020.

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

Hello @cmackia2020 and welcome to Mayo Clinic Connect.

I am so sorry to hear of the loss of your 13-year-old son. What a shock and a tragic loss. Please accept my condolences.

I can certainly understand your confusion as to why you were never warned of the possibility of SUDEP. This seems to be true of other parents as well. On Connect we have a discussion about this happening to young people with epilepsy. Here is the link to that discussion, https://connect.mayoclinic.org/discussion/s-u-d-e-p-sudden-unexpected-death-in-epilepsy/.

I would like to invite Leonard, @jakedduck1, to join in this conversation as well.

If you do not mind sharing more, was your son asleep at the time of his cardiac arrest?

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cmackia2020
I am so sorry for your loss.
I hear this far too many times from parents whose children have nocturnal seizures wondering why they were not not told of the possibility. Many physicians refuse to ever bring up the subject of SUDEP. I heard a Neurologist say he would never tell parents of this fatal complication.
Doctors rarely if ever tell patients who have nocturnal seizures they should have an anti-suffocation pillow or bed alarm. Some parents have told me they would have slept with their child in order to be woke up by the seizure so they could help their child, possibly preventing the death.
I think the negligence of doctors is unconscionable. Perhaps none of those things would help but if I had a child with nocturnal seizures I would certainly want to try anything and everything to help my child.
I’ve had Epilepsy for 54 years and had over 13,000 seizures and SUDEP or Status Epileptics were never mentioned to me br any physician of the many doctors I’ve had. At 15 I had Status Epilepticus and was in a coma for eight months. it would’ve been nice to know the posibility of both situations existed.
My heart goes out to your family,
Jake

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@hopeful33250 He had woken up around 930am. Went to the kitchen to take the worst medicine ever to be put on Keppra and went to his room. He started texting me. At 10am my mom went into his room to give him his Epodilex and found him lying face down. My dad administered CPR for 15 mins. He was brought to one hospital then I arrived from work just before they were preparing to airlift him to Children’s Hospital in New Orleans. He was pronounced dead at 959pm. However, we all knew he died at home. Cardiac arrest is the primary with epilepsy as the secondary on his death certificate. I want to fight to get SUDEP added.

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@cmackia2020

@hopeful33250 He had woken up around 930am. Went to the kitchen to take the worst medicine ever to be put on Keppra and went to his room. He started texting me. At 10am my mom went into his room to give him his Epodilex and found him lying face down. My dad administered CPR for 15 mins. He was brought to one hospital then I arrived from work just before they were preparing to airlift him to Children’s Hospital in New Orleans. He was pronounced dead at 959pm. However, we all knew he died at home. Cardiac arrest is the primary with epilepsy as the secondary on his death certificate. I want to fight to get SUDEP added.

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My heart goes out to you @cmackia2020. What a frightening time for your whole family.

I can understand your effort to keep SUDEP on the death certificate and to make it known to other epilepsy patients.

Have you ever been involved with an epilepsy national organization or support group to make your voice heard? I realize that might take a lot of energy and time and that is probably something that you don't have after the trauma you have been through.

Please keep in touch with Mayo Connect and continue to post.

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@cmackia2020
Hello again,
I'm assuming he didn't have an autopsy.
Had your son had a seizure that day?
How long did he have Epilepsy?
Did they start at a young age?
People who have 3 generalized tonic clonic seizures per year have a 15-fold increased risk of SUDEP.
Did he normally have nocturnal seizures?
Doctors claim 80% of them discuss this issue with patients. I don't believe that for a second.
I agree SUDEP should be added to his death certificate and I wish you the best of luck in getting it changed.
Blessings,
Jake

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Hi @cmackia2020
I am very sorry to hear about your son's loss! My condolences to you and your family.
Doctors who have treated me did also NOT mentioned SUDEP to me. I have discovered it myself when trying to learn more about epilepsy and then I have questioned them about it. The Epilepsy Foundation has excellent material on that and a SUDEP Institute.
I agree with you! We patients, especially those with nocturnal seizures or seizures that are not 100% controlled, should be informed about SUDEP risk, even if it represents 1 in 1000 people with epilepsy.
If I may ask you, what kind of epilepsy did your son have? Were his seizures controlled with the medication?
Your initiative of increasing SUPEP awareness is great!!!! Keep strong!
My heart goes out to you and your family, too.
Santosha

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