Epilepsy Foundation

Thanksgiving morning our son had a seizure. It easily lasted at least 3
minutes. It was a grand mal like we were used to though. I looked it up
on epilepsy.com and almost to a T, I firmly believe he had a partial
complex seizure. This would be the first time we have seen this
seizure. Well, for 30 minutes or so afterwards he was very disoriented.
Wouldn't communicate with me, looked confused, had no idea where he
was, had no balance. To me, this was normal after having a seizure
except usually he sleeps for 3-4 hours but if he doesn't go to sleep
right away he acts like this.

Well, I wrote it down like I was told and b/c of the holidays I waited til Monday to call the doctor.
The nurse then told me that how he was acting afterwards (the
disorientation) that it is highly likely he was still seizing and
needed emergency meds and to have called the on-call doctor or gone to
the ER. I didn't know this though!!! We're new to this! So of course I
feel HORRIBLE! He is fine now though.

I have spoken to another mom and she says if they act disoriented for longer than like 10
minutes they bring her child in or if he sleeps more than 5 minutes
after a seizure she brings him in per doctors orders cuz they could
still be seizing. But our doctor has told us it is normal to sleep 3-4
hours after a seizure (and I have read that is normal too). And that
any disorientation after his seizures I have been told is normal yet
now they are saying it isn't? And that after 15 minutes of it he needs
to go to the ER??? WHAT DO WE DO??? I am confused! What do you do for
your child? What signs should I be aware of that warrant his diastat, a call to the on-call doctor, or even the ER/911?

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I have a 7 year old son that has happened before he has Tonic-CLonic seizures, TOnic and PetitMal he is now on ketogenic diet! This one morning Owen went into seizure he typically sleeps for 3-4 hours after sometimes i do have to administer diastat...after this one episode he didn't stay asleep he was up acting very weird hyper/ lethargic would answer some questions rigth others wrong so i immediately called his doctor they told me to take to er because there was possible seizure activity still going on and you dont want statis......I know most seizures are different for most people however if there is any significant change i always call cause we dont know either this is all new to us as well.....
Dear Chelle,
My son's post ictal lasts about an hour and he can't walk or tell you his name. I do take him to ER simply because he usually has citical potassium and glucose levels. This can be seriously harmful to heart and other organs. Those grand mals can really use up the sugar in ones bloodstream and get electrolytes all out of whack.
Just something to think about when faced with your next decision on this matter.
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.
Elaine
See and I thought it was normal, the only abnormal thing was he wasn't sleeping which is what he normally does after a seizure but this wasn't his "normal" type of seizure. You know? I think the only reason they think he may have still been seizing is cuz I couldn't get his attention for the life of me and couldn't get him to focus on me. But I dunno. At this point I just don't really know and just keep my phone by me so if this happens again and it goes too long I will just call the on call to make sure and get it from the horses mouth basically.

I honestly don't care for this particular nurse at all. She makes us both (my husband and I) feel stupid for not knowing everything about this! He was just diagnosed with a seizure disorder in August and officially diagnosed with E 2 weeks ago! Give us a break! (sorry to rant, we had to call again today for another seizure, just frustrating) But she is the only nurse they have in the office so I am like stuck talking to her. She does give the report of what we said word for word (she reads it back to me) to the doctor and then calls back with his notes on it.


jeremysmom said:
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.
Elaine
Hi Chelle,

This sounds like my normal post-ictal state. After a stronger seizure I will normally fall asleep for at least 3 hours and as long as 12 hours.
If I do not fall a sleep, I will be in zombie mode for at least 30 minutes, and not fully recovered until I have had some high quality sleep, sometimes I do not feel quite like myself until after the next seizure.

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.

 

Ed

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:

https://docs.google.com/document/d/1dE62qZ-zt6Vty4Q8FfMA4ZdUXH0Ti8D...

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