@momofconcern
Good afternoon,
OK here we go again. I’ve already lost two messages.
First I’d like to welcome you to Mayo Clinic connect.
I think the first and most important thing to understand is that epilepsy is an extremely individualized condition, different people react very differently. You made the following statement,
”He will stiffen and collapse to the floor, have convulsions for a time, seem to go into a deep sleep for a minute or two, then rouse and get up off the floor all the while being unconscious) and flail around the room knocking things over, stumbling into everything, basically destroying the room until he regains consciousness.”
The following sounds like a normal tonic clonic seizure, ”stiffen and collapse to the floor, have convulsions for a time, seem to go into a deep sleep” The part I’m not understanding is where you say,
”then rouse and get up off the floor all the while being unconscious)”
Are you sure that he’s not in the post ictal stage (Recovery phase) of his seizure where he’s very confused versus unconscious?
is the episode that you mention his regular seizure or does the getting up part seldom happen. if he is unconscious I’d be curious to know if he’s having a focal impaired seizure after the tonic clonic. I don’t know if that ever happens although I know the reverse can happen which is known as a focal to bilateral tonic clonic seizure.
does your son ever have focal seizures or an Aura? Once he comes to after walking around the room does he sleep again or is he very tired? Have his doctors tried switching, adding or increasing medications in the past three years? since he’s been having seizures for three years has his doctor ever mentioned that he may have intractable epilepsy? i’m not sure where you’re at or if you’re even in the United States. I was going to say that Mayo Clinic in Rochester Minnesota has the best epilepsy center in the US. has he ever had a video EEG? you might request from your neurologist that he be seen by an Epileptologist who are the most knowledgeable epilepsy specialists. they are often better trained in the interpretation of EEG’s.
As far as it taking several hours for him to feel like participating in life or game yes that’s extremely common, which is known as the post-ictal phase.
For the most part of what you describe it's a typical tonic-clonic seizure scenario?
Have you told his neurologist the same story that you did here? i’d be curious in knowing how he replied.
Do you know what type of epilepsy your son has Temporal Lobe, Frontal Lobe or does he have an epilepsy syndrome?
In case you decide to have your son seen at an epilepsy center below is a link of centers throughout the United States, just enter your zip code or State.
https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/
I also posted your message on an epilepsy site and will let you know of any replies.
Blessings,
Jake