To me, this just sounds likes a typical post-ictal state. My son's seizures will only last for a few minutes, but the post-ictal confusion can last for a half-hour or more. Don't feel so guilty! I would have done the same thing. You should believe the doctor, not the nurse who may not be familiar with your son's case.
My daughter is 2 1/2 years old and started having seizures at 9 months old. she has complex partial seizures and she will normally fall asleep for at least 2-3 hours after she has a seizure. We told her neurologist about this in the beginning and he said it was very normal for people to sleep for awhile after they have a seizure. He said that it gives time for the brain to recharge itself after a seizure. So, if she falls asleep afterwards....I will just let her sleep as long as she wants but I lay her down where I can keep an eye on her (usually on the coach in our living room). We have had to give her the diastat several times when her seizures were to close together without any recovery inbetween. Never because she fell asleep afterwards. I hope this helps!!!!!!!!
One thing I don't think people consider when someone has a seizure is the brain recovers one side at a time after seizures. Usually the side that controls hearing and seeing comes back first but the side that does the talking takes another 10 minutes. This used to be my biggest frustration because people would feel I just didn't want to talk but I would have given anything to communicate right away. A lot of times I just closed my eyes and fell asleep to eliminate the worst part as far as I'm concerned.
It can be difficult to tell when a seizure stops (of course it can also be quite easy too depending on the seizure and post-ictal presentation). Unfortunately unless your ER can quickly get an EEG going they're just going to be guessing too (hopefully they'll have educated guesses, but they're not usually seizure experts in the ER).
I would recommend videoing any strange seizures or post ictal periods so you can show your neurologist, they should be able to give the best advice.
If your son has more of these seizure types he'll hopefully develop a normal pattern that will help you recognize when his seizure has stopped. For example if after a partial seizure he always bounces back after 30 minutes then maybe 30 minutes is how long you wait before seeking additional help.
Over the years I've developed a pretty good (but not perfect) sixth sense for detecting when my daughter's seizures have stopped. I don't know that they'll help you much (my daughter's post-ictal isn't usually what you describe) but my "has my daughter's seizure ended" checklist is located here:
HI as child I had grand mal seizures they were very hard I have added story of how I lost my memory at age nine . I use to sleep a whole day when I had a seizure that is very hard work. The most imported thing for parent is a understanding heart to that child. If they forget every thing don't get upset with them just love them more. Meredith
I just want to throw somethings out about epilepsy. grand mal or also known as tonic clonic seizures. They take alot of energy from your body so thats why your son sleeps that long. I'm 21 years old and Ive had epilepsy my whole life. When your son is sleeping if he was to have a seizure while sleeping you would see him start convolsing. The best thing you can do there is to roll him on his side so known of his Saliva can gets down in his throat where he could start choking and lead to asperational numonia. after grandmal seziures people need alot of rest so they can recharge their brain. Memory for example. When you asked your son those questions and he answered wrong about how long did you ask him after he woke up from his seizure? when people wake up from grand mals they may have holes in their brain (memory loss) so thats why they need the rest to recharge their brain. while they are resting, check on him every 10 to 15 minutes. Now ask your son if he is like having migraines or head aches after his grand mal seizure because head aches and migraines are one of the top after effects for people with grand mal seizures.
Now petit or partial seizures, he should only fall down and go to sleep and wake up. Most of the time people don't have really bad after effects with these seizures. If their is any convulsing or seizing, it is a grand mal seizure.
If your son is just having one seizure and he looks like you can keep him safe like putting him on his side, you dont need to take him the the ER everytime. thats what my mom did with me when i was young and it just ended up with costing us alot of money. now if he is taking his meds and he is having like 20 min or long seizures or more than 2 seizure every 4 hours yes take him in because something is not right with his medicine. usually i tell my family if they see me have a seizure, bring me my medicine so i can take it right after i wake up.
Now i do have to say this, if your son is having a grand mal seizure, do not restrain him to the ground where he cannot move because tell you the truth that just turns someone into a wild animal. I had a grand mal seizure with a friend riding in his car and the seat belt had me tied to the seat so i could not move what so ever and when they got the seat belt off me they said my eyes were open and i tried to pick a brick up and throw it at someone. They stopped me but i had no idea a did that. it all part of the seizure and that seat belt restraining me in which made my seizure worse. now there are other things like never put anything in his mouth while having a seizure. I had a friend almost get his finger bit of from doing that. he tried giving the other person his medicine while he was having a seizure and i yelled as loud as i could no. I was late and what he had to do was try to get his jaw open and right when he did, his finger got stuck in his teeth.the guy having the seizure almost bit his whole finger off. So restraining and putting things in their mouth, big no no.
Things to be aware of for your son are seizure triggers. Triggers are like flashing light (ex strobe light), loud high pitch noise (ex sirens), stress, energy drinks, not getting enough sleep, bad dreams, and etc.
I hope this helps you out with taking care of your son.
mom away said before my memory loss seizure she said she would tell me to take a deep breath even through I was out in my subconscious mind I would take a breath .The day of my memory loss mom was busy I had my seizure by the time she realized it . After this busy or not she made sure she was there to tell me . This keeps from having brain damage done because by taking a deep breath bring oxygen to the brain.
Our son is very slow to come back to himself after a seizure. He often throws up, is very light sensitive, and has a huge headache. He prefers not to be bothered by people,and to go to sleep. later, he won't remember much about the first couple of hours after his seizure. I've been told by his doctor that he doesn't need to go the ER if his grand mal seizing has stopped. However, colleges don't follow this rule for their on-campus housing, and even medical personnel unfamiliar with epilepsy get confused.
I would have a chat with your doctor about his nurse the next time you are in. Mention this specific conversation, and see what he says.