Prolonged Myoclonic Astatic Seizure

The neurologists and epileptologists who have viewd this video aren't sure how to classify it. It has been described from a tonic clonic to a myoclonic status. It lasted 11 minutes plus. My son is 4 years old with Doose Syndrome.
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Category:

People & Blogs

Tags:

• seizure
• seizing
• doose syndrome
• mae
• myoclonic seizure
• lgs
• lennox gastaut syndrome
• status
• status epilepticus

[mustang19898]

Hmm...the fact that he moved like he did at around the 1:10 mark suggests to me it's myoclonic status. It looks like he made those movements voluntarily which usually can't be done in a tonic clonic seizure. I myself experience about 9 different seizure types on top of researching seizures although this is the first time I've heard of Doose syndrome.

[tarynharrell]

@mustang19898 He has very atypical seizures. This is not a tonic clonic though. Doose is pretty rare. My son suffers from tonic, tonic clonic, atonic, myoclonic, abesnse, a-typical absense, and astatic seizures. Now that we have him on the ketogenic diet, he is only having tonic clonic, myoclonic, and a-typical absence seizures, and they are much less intense.

[mustang19898]

@tarynharrell Poor thing. I myself experience absence, tonic, complex partials that originate from the temporal lobes, frontal lobes, and pareital lobes, myoclonic seizures all day, head drops, and non-epileptic tonic-clonic seizures.  The tonic-clonics are hard to explain, but they are caused mainly by stress or low blood sugar; not by the brain. I also experience cataplexy because of what they suspect is narcolepsy, which look like full body atonics but are not seizures.

[tarynharrell]

@mustang19898 Do you have an official diagnosis? His seizures originate from all over his brain, they can't pinpoint an area. I worry that his life as he grows will be typical to what you describe. Are you able to function pretty well, do you live on your own? Don't feel that you have to answer my questions, just very interested in how epilepsy affects an older individual who isn't a child:)

[ElvenLovePro]

This would be terrifying. It is amazing you stay so calm, I would have freaked out. Poor little guy. I just wish I could reach out and hug him when he starts crying at the end.

[SquallyParkour]

Aww <3

[willybobo7]

@lovemeg5186 @lovemeg5186 It is, in fact, both. Poor boy, He broke my heart, I have a 4 yo boy and I can imagine how hard to see your son suffering like this and you can't do nothing about it but watching him until the episode subsides.

[lovemeg5186]

I do not know what breaks my heart more.The seizure or him crying afterward. :(

[lovemeg5186]

What is an astatic Seizure?