My Story - Early days

Since I started having seizures almost immediately after being born, I also started seeing a neurologist almost immediately as well. My pediatric neurologist was Dr. Wang - which is pronounced like "gong" not like "gang". He had a saying "If you're saying it wang, you're saying it wong."

Dr. Wang put me on medicine to try to control the seizures, and my mom started a seizure journal. A few years ago, we found a small piece of this journal and I digitized it. Here's what I found:

1985

Feb 7 2 Seizures with Apnea

Feb 10 2 Seizures with Apnea 

Feb 20 Off  Dilatin 

Feb 24 2 Seizures @ home

1 Seizure in the ER

Turned Blue

Started Dilatin

Mar 29 Completely off Dilatin

Apr 21 2 minute seizure

Stopped breathing for 10 seconds

Apr 22 4 minute seizure

Back on Dilatin (4cc's 2x's)

1986

Jan 13 2 minute seizure

Eyes rolled back into head

Left arm jerked

Jan 16 3 1/2 minute seizure

Jerking, then stiff, bent arms, eyes rolled back

After it stopped he went to play immediately 

then seized again for 10 seconds

Jan 16 Seized in sleep (11pm) for 1 1/2 minutes

Phenobarbitol - 5cc's 2x's/day

Feb 2* 3 1/2 minute seizure

Lips started to turn blue

Eyes back and body jerking (7:30pm)

Feb 3 4 minute Seizure (1 am)

Took to hospital - Pheno blood level @ 23

Back on Dilatin - 50mg 1x/day

Feb 3* 3 minute Seizure (7:30am)

Eyes back and body jerking

AFTER last 3 seizures he had high temperatures

1987

Mar 9 2 1/2 min Seizure (11:35am)

Eyes back and body jerking

Was weaning off Dilatin - Hospital put him back on 2 1/2 tsp/day

1990

Fell on garage floor at babysitters house and smacked head.  Stood up - fell - went stiff - foamed at mouth and lost consciousness. Was awake for ambulance.  Had 10 second or so Grand Mal when they were trying to attach IV.

1993

Jan 9 Seizure on Stairway

Jan 10 2 seizures in toy room

Fell off stool and turned blue

First time Stephanie witnessed one.

A star/asterisk (*) indicates that I was not taken to the hospital.

I recall some of these incidents, but not many. For instance, I remember the 2 listed in 1993, but not many details. I remember that it was a weekend, because I had seizures both Saturday and Sunday that weekend, and that was abnormal for me at the time. I remember thinking that it had been a bad weekend for seizures. (And I actually remember a bit about the one on the stool in the "toy room".)

I've also heard stories about the one in 1990 at the babysitter's house, but I don't remember the incident. From what I've heard, it was raining and I think we had been playing in the rain. Then I slipped and fell in the garage and had the seizure. But again, all of this is stories from other people. I don't actually remember anything from that day.

Also, notice that I was on and off of medicine, and switched from one medicine to another a few times until we found Tegretol. It's actually not noted when I went on Tegretol, but I assume it was somewhere in the emptiness of the log between 1987 and 1990. I was on that until 2014.

This is also not a complete log of every seizure that I had. I'm not sure why these are the ones that were logged, or why they were not all logged, but I do know that this is likely incomplete.