Hi, I'm Jen pt 1

 Hi, I'm Jen. 

I have a SCN1A gene mutation and genetic epilepsy. 

However, I grew up under the impression I had a vaccine reaction that caused childhood epilepsy/febrile seizures. That's the conclusion drawn at the time and what the doctors told my parents after I had my first seizure for about 45 minutes at 4 months old the night after getting my Pertussis vaccine. At the time, neurological reactions to the form of that particular vaccine given were a possible side effect. In hindsight though, the gene mutation just reared its ugly head coincidentally after I received that vaccine and it was not the vaccine that caused my seizures.

Anyway, I ended up being medicated from my second seizure until about age 9 when my seizures were less frequent. I do remember they got to the point where they were maybe once a month, then once a year and there was a long spell until my last childhood seizure which was when I was 14 years old. 

My seizures as a child were almost always in my sleep and with a temperature above 98.6 - legit anything above normal. I distinctly remember times when I'd wake up in the morning, not feel well, go back to bed ... and would end up seizing in my sleep. 

So although this was absolutely awful for my parents (including the fact they sold their first home/ dream farm/ acreage :o/ to move closer to a hospital), there are some things I'm super thankful for and that's what I'm going to try to focus on rather than the crummy stuff (example: awkwardly having to explain myself/ febrile seizures like some sort of warning label before slumber parties).

1) The sleep factor meant I could still do most things without any real limitations including swimming. Seizures that are random without a known trigger can make any kind of water dangerous - not just a pool, but simply bathing alone or even a shower (seize -> fall -> hit something on the way down). I love the water and I am very fortunate that was something I was capable of doing. 

2) These seizures did end when I was 14 years old, meaning getting my driver's license on time like anyone else my age was never an issue. 

3) My parents moved to a small town with family a house away (shout out to the neighbors who lovingly let us run threw their backyard between houses for years) and a few blocks away as well. This small town also meant that most of the emergency personal that showed up when my parents had to call were from town. As a parent, I'm sure it was reassuring to know these individuals and not have to explain the situation over and over again. As a kid, it was nice to see familiar faces when waking up (often) definitely not where you fell asleep.

4) We had very involved pediatricians. I remember them being at our house in the middle of the night when I was sick - as in, I have a memory waking up in my parents' bed after a seizure to them giving me fever-reducing meds. My mom has also mentioned how they'd babysit me every so often as well so my parents could go out.

5) The temperature thing had a real "benefit" long after the seizures ended - Any tempt over 98.6 and the school nurse would send me home "just to be on the safe side". 

There is more to tell from my experiences with epilepsy, but this entry is long enough already. I'll add more later.