I didn't want to make you wait long for part 2, so here it is. (this is the long part.)
Last night my mom was going through some things that she found in her basement, and today she gave me a call about some of her discovery.
She found a seizure log that she had kept of my seizures from birth to roughly 5 years old! Now, we both agreed that this log was probably not complete, but it's pretty awesome nonetheless.
It was a log that she kept in a small notebook, hand written, and apparently she even wrote on both sides of some pages. She said that on one page she wrote in pen, then on the back she wrote in pencil, and the pencil was hard to read because the ink had seeped through to the back of the paper. So instead of just scanning this notebook and sending it to me, she actually went through the trouble of typing it all out for me so that I could actually read it!
Some of these entries have dates, times, descriptions of the seizure, length of the seizure, whether or not they took me to the hospital, where the seizure happened, and in some cases, what I did after the seizure was over.
The first entry is actually from the day after I was born. "2 seizures with Apnea." Not sure what that apnea part means yet. I texted mom to ask and she never answered.
UPDATE: Mom just responded, apnea means that I stopped breathing.
The last entry that she found is actually the first seizure that I can remember. I was playing Sonic the Hedgehog on my Sega Genesis, with my sister watching. I was in a tall chair/stool, and fell backwards into a bean bag when the seizure happened. (I don't remember the falling, but I've been told that's what happened.) I could actually still tell you roughly the part of the game that I last remember seeing before the seizure. (I didn't make it very far before the seizure.) It was also the first time my sister saw me have a seizure.
I think it was that seizure that I remember waking up after it. She had moved me to the couch, with my head on her lap. I woke up, looked up into her eyes, and she said "you just had a seizure, go to sleep." And I did.
(Although that may be a memory of a different one, because the log says that I turned blue after the one on the stool, which means I probably woke up in an ambulance or in the hospital after that one. It may have actually been the one the day before the stool incident... because there is one the day before in the log as well.)
My favorite entry so far was this: a seizure that occurred on my brother's birthday, when I was less than 1 year old - "3.5 minute seizure. Jerking, then stiff, bent arms, eyes rolled back. After it stopped he went to play immediately, then seized again for 10 seconds."
Seriously? I had a seizure for over 3 minutes, then went to play? Wow, I was one tough kid apparently. My only question is - did I still go play AGAIN after the 10 second seizure that followed?
Some of the even more interesting information is the starting and stopping of medication. It's all here. "Off Dilatin, Started Dilatin, Completely off Dilatin, Penobarbitol - 5cc's 2x/day"
Why is that more interesting? Because of the LACK of information after every time it says that I was put on medicine.
Feb 24 - Started Dilatin
March 29 - Completely off Dilatin
April 21 and 22, seizures both days - 22nd, back on Dilatin
Jan 13 - seizure
That's almost 9 months without a seizure being logged! The question is, were there seizures in there that weren't logged, or did I really go 9 months without a seizure because of the meds?
There is a LOT of information here, and I have just begun to process it. But from the looks of it, even as an infant my seizures were fairly controlled while I was on the meds. I called my mom to confirm this discovery and she agreed. She said that I was pretty controlled as long as I was on meds. According to her, the main times that I wasn't controlled was after growing, and before upping my dosage to accommodate for the new weight.
So much information, so little time. I'm going to do some processing of this information and I will report back with any new findings. (Plus, mom says there may be more to this log that she has yet to find.)
BTW - I have to say thinks to +Vicki Smith (AKA mom) for having the foresight to do this all those years ago, and for finding the information and allowing me to gain some more insight into my past.
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