[News] New American SUDEP Guidelines

[Bernard]

The American Academy of Neurology and American Epilepsy Society have joined forces to produce a new set of guidelines to inform American clinicians of SUDEP, its risk factors and how to discuss this with their patients. The guidelines have been produced by researchers to provide support to clinicians who manage people with epilepsy.
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https://sudep.org/article/new-american-sudep-guidelines-back-anyone-epilepsy

 

[Cint]

Will the clinicians discuss this with their patients? onder: Something inside me tells me otherwise.

I've spoken about it before on CWE. I met a woman here in the Denver area who lost her daughter to SUDEP and as a result of it, she started her own organization to provide seizure dogs and info to others about it. I learned more about SUDEP from them than I ever did from my docs.

http://www.ChelseaHutchisonFoundation.org

 

[Bernard]

Just got an email from the EFA with a couple of links discussing the new guidelines:

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Summary of the SUDEP Guideline

Based on these findings, the guideline authors make the following recommendations:

• Neurologists should inform patients and caregivers of the risks of SUDEP.
• The risk of SUDEP in children is rare (1 in 4500 per year or, conversely 4499 in 4500 will not die).
• The risk of SUDEP in adults is small (1 in 1000 per year or, 999 in 1000 will not die).
• Clinicians should strive to reduce or eliminate GTCS (generalized tonic clonic seizures) and inform patients that seizure-freedom, especially from GTCS, is the best way to reduce SUDEP risk.
• Nocturnal supervision or monitoring device may be an appropriate measure to reduce risk in patients with frequent GTCS or nocturnal seizures if compatible with the patient’s circumstances and not overly burdensome.

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More: https://www.epilepsy.com/information/professionals/aan-aes-sudep-guideline-professionals

SUDEP Guideline: What does this mean for me?
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More: https://www.epilepsy.com/article/2017/5/sudep-guideline-what-does-mean-me