Thursday, June 4, 2015, at about 11:20pm, Josh had a seizure. We were at home, on the couch, watching television.
The ambulance was there by 11:35 pm. People got him settled and gave him oxygen and talked to me and to him. I got into the front of the ambulance, and the driver told me that Josh had a second seizure.
We got to the hospital, and Josh was having a third seizure as they brought him into the building.
There may have been a fourth seizure. He may have vomited at some point. There was blood coming from his mouth, and I was told that this was probably because he bit his tongue.
POINT OF INFORMATION: When someone has a seizure, do not touch that person. All the muscles are locked, and you could break something. When the seizure is done, turn the person's head to the left side so that they do not aspirate -- so that they do not drown in their fluids.
Additional point of information: What happened was status epilepticus. This means that Josh had seizure after seizure without returning to normal in between. He may have seemed to be starting to return to normal to me, but that wasn't the case.
Josh asked what a seizure actually is. It's when all of the neurons in the brain fire at once. He remembers none of this because, as I understand it, his brain could not make memories while seizing.
Tests done included three CT scans (cat scans?), one with contrast; one lumbar piercing, which is like a spinal tap; and an EEG, which involved 26 tiny electrodes.
The EEG was normal. The lumbar piercing ruled out infection or inflamation of the brain or spinal cord.
WHAT IT IS: As near as folks figure it:
There is a chronic, benign overgrowth of the sheath around the brain. It is small and "not scary".
Another word for this is "tumor". It has probably been there since birth, and grows very, very slowly. It is twice the size of a pea.
Another word used is "meningioma" (relating to the meninges, the covering of the brain. "meningitis" means "inflamation of the skin of the brain").
So, this overgrowth can lead to seizures in the context of a "viral syndrome", which sounds like, oh, say, the lingering nasty cold we've both had. Add in fatigue, as the backdrip kept us both up coughing. There may have been dehydration as well -- I am pretty sure they had to hydrate Josh.
He did not hit his head. We have not been drinking for quite some time, and I gather the way we drink (occasionally) does not rate as drinking from a doctor's point of view.
We did later learn that Josh's maternal grandfather had two seizures, one after playing cards all night and not going to the bathroom, and one when he was walking along and suddenly found himself looking up at the stars.
WHAT WE'RE DOING ABOUT IT: We == Josh, me, and a whole lot of doctors and nurses and other hospital staff, as well as everyone who's been helping us out.
Josh is taking 500 mgs of Keppra twice a day, morning and evening, roughly 12 hours apart, basically the same time every day. It is also called levetiracetam. It is generally well tolerated. We do have a sheet talking about side effects and so on.
We need to schedule an MRI. This is not an emergency, and is likely to wait for follow up at the hospital.
We need to meet with people at the hospital. This includes a neurologist, but I think it also includes other people. The meeting has not yet been scheduled, but we think it will be late this week or early next week.
HOW WE ARE DOING NOW: We are both scared and dealing in our own ways. I'm more obviously frazzled. Josh is quieter about it, but assures me that he is probably more scared than I am.
He is currently constantly tired. We are not happy about this, but we are a little calmer having heard from many vectors -- doctors and friends -- that this is normal.
His appetite seems to be way down as well. Today, so long as he eats something reasonable for dinner, we aren't going to push. Tomorrow, if he's willing, I'd like to try him eating something for breakfast to see if that has any effect on the tiredness.
We are hydrating. I am trying to keep an eye on this, but it seems to be less of a thing than the food, for both of us. I made a conscious decision to have a meal before dinner, and I think I am on a somewhat more even keep because of it.
UPDATE: We now have a follow up appointment for June 23. This will involve getting a medical record number and hospital card.