Connect
← Return to Has anyone experienced or know anyone that has expe similar seizures?
Discussion
Has anyone experienced or know anyone that has expe similar seizures?
Epilepsy & Seizures | Last Active: May 30 7:39pm | Replies (14)Comment receiving replies
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.
Replies to "Thank you both for the reply. He has had several EEG test, including take home and..."
Connect
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)