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@santosha

@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.


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)

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Replies to "@dvintage Good Morning As Jake @jakedduck1 has well said it is not unusual that EEGs do..."

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.