Has anyone experienced or know anyone that has expe similar seizures?

@dvintage
It''s not unusual, that the EEG”s don't show any abnormal brain wave activity. The EEG normally only show activity if a seizure occurs while the test is being performed.
About 50% of the time people with a known seizure disorder will have a normal EEG reading.
Has your son had various types of EEG’s or just the routine 20-45 minutes version?
Sleep or sleep deprived EEG’s show brain waves that doesn’t appear on a routine EEG while rested or awake. On a routine EEG I always stay up the night before which can be a challenge
Ambulatory EEG which is done at home may or may not include video and audio. Usually they last for a day, week or maybe more.
Has your son been admitted into an Epilepsy Center Monitoring Unit where they use Video telemetry and are treated by an Epileptologist.
Epilepsy Center locations in U.S.
https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/
What seizure medication/s is he taking?
What happens during the hour-long seizures? It sounds like he may be possibly having focal seizures. Has he ever had a convulsive seizure?
Blessings,
Jake

@dvintage Good Morning
As Jake @jakedduck1 has well said it is not unusual that EEGs do not show any abnormal brain activity in people with epilepsy. I have experienced it myself. I have had epilepsy since I was a teenager and just got diagnosed when I was 48 years old (I am 53 years old today). In my teenage times and when younger, I did several routine EEGs and they were all normal. It was only when I was sleep-deprived the night before the EEG exam in 2019 that it showed the abnormal brain waves, being then diagnosed with epilepsy.
As Jake has already asked, has your son had a stay at an EMU before? Recently, I have shared a webinar from the Epilepsy Foundation about EMU (Epilepsy Center) that I believe would be interesting to watch.
https://www.youtube.com/watch?v=0fDchdtQ1Ec
Is he being treated by a neurologist or an epileptologist? It seems that an epileptologist (neurologist specialized in epilepsy) would be recommended.
All the best!
Chris (@santosha)

Thank you both for the reply. He has had several EEG test, including take home and overnight stays including one at the Children's Hospital of seattle. Every time he has had an EEG he has had multiple seizures lasting over an hour and nothing was detected. He currently sees a children's neurologist. A part of us questions the seizure diagnosis and that's one of the reasons I'm trying to find anyone else with a similar seizure pattern. The weird part about it is the length he has them for specifically and once his seizure stops he goes right back to normal. Does not feel tired. We are also worried about his leg and gate issue when walking. We were told seizures don't cause nerve damage in limbs. If that is the case then what would be causing issue. Hoping we might find someone out there that might have a similar. The doctors tell us they have never seen it before and have no cases to compare it to, and he has zero medical issues or problems. He is 100 percent normal for the 22 hours a day he is not having the episodes or seizures.

@dvintage
Have doctors ever mentioned
1. Non convulsive status epilepticus?
2. Focal aware seizures/simple partial seizures?
What I find interesting is that these episodes, at times last an hour indicating to me possible status epilepticus. The one sided sensory activity in his arms and legs is a sign of potential focal epilepsy. Isn't postictal and doesn't feel tired or sleepy is curious to me if it's seizure activity although possible.
I believe to rule out any type of seizure activity he needs to be in an epilepsy monitoring unit where Under the care of an epileptoligist so his EEG and video can be correlated.
If he is not experiencing any
postictal confusion it makes one wonder if he could be having psychogenic non-epileptic seizures (PNES) or a combination of PNES and some form of Epilepsy, Focal aware seizures perhaps. Does he have any memory impairment after the episodes?
Take care,
Jake

Good Morning @dvintage
Just sharing with you my experience which might be helpful. When I was a teenager and started to have my focal seizures (auras and complex partial seizures), they lasted very few seconds. I was just absent for very few seconds and do not remember my mother saying I had body movements during my seizures. But I can clearly remember the different taste in my mouth and the smell in my nose I had at the beginning of the seizure as well as the deja vu sensation. I did not experience any symptoms after the seizure. I retook my activities as if nothing had happened, not feeling tired and confused. But this has changed later. Today, after my seizures, I get confused and can not speak after them (sometimes for 1 hour). Perhaps for this reason, my epilepsy has not been diagnosed at that time.
When those episodes started, my mother took me back to the neurologist who took care of me after I had an accident when I was 5 years old and stayed in a coma for 1 week. I repeated the exams and nothing was diagnosed. The neurologist said to my mother this was my nature. As the episodes continued and my parents were not satisfied with the answer of my neurologist here in São Paulo city (Brazil), they asked a family member living in Washington DC to take me to an appointment at the Children's Hospital there during some holidays I spent in Washington when I was 14 years old (1984). Nothing was diagnosed and I continued with my life.
Today after my diagnosis, I know that my epilepsy was caused by this event when I was 5 years old, manifesting itself in a very subtle way when I became a teenager and evolving throughout the years.
Based on my experience, if I were in your place, I would take your child to an epileptologist, a neurologist with much more experience in epilepsy compared to a neurologist. As @jakedduck1 mentioned, taking your child for an EMU stay to rule out the possibility of epilepsy is advisable.
Knowing about the different types of epilepsy syndrome and seizures might also be helpful. The Epilepsy Foundation has great material on that and has helped me a lot in understanding my epilepsy. Here is a link with the types of seizures that gave a very good understanding of what happened to me:
https://www.epilepsy.com/what-is-epilepsy/seizure-types
All the best to you and your son!
Chris (@santosha)

Is seizure curable?

Hi @wellness100
Epilepsy is not curable in adults, as far as I know, but it can be curable when the person is a child through the keto diet. There is a nice movie about it called "First Do No Harm" with the participation of Meryl Streep. It tells the story of the Charlie Foundation It is free on YouTube.
https://www.youtube.com/watch?v=tHZnuhqVTgY&t=3641s
Seizures can be controlled through several alternatives: medications (AEDs and medical cannabis), diets, supplements, VNS/RNS, TMS (transcranial magnetic stimulation), trigger management, exercising, and if needed surgery.
Have a nice day!
Chris (@santosha)

Thanks for sh

One addendum, a thing I have just learned.
Those who have catamenial seizures, I understand that these seizures disappear after menopause.
I have copied here a link with some basics on Catamenial Epilepsy:
https://www.epilepsy.com/stories/basics-about-catamenial-epilepsy
Wishing a good day to all of you!
Chris (@santosha)