GeneticEpilepsyJournal

Ok, you know what happens to me after the delivery of my first baby, Darling, but prior to that - just the decision to have kids was something to consider.  Honestly, I had always thought of adopting - plenty of kids in need, right? However, my husband was insistent on having biological kids and with the lifestyle we lead (lots of rescues, a pit bull dog, some hospice animals who had gone unvaccinated for a while, etc), we were basically going to be shot down for a foster to adopt type situation from the research I had done.  When considering having our own biological kids, my last seizure had been about 10 years behind me. I'm also unaware of the gene mutation factor and still under the impression that my seizures were vaccine-related ... a vaccine my sister didn't have and she didn't have seizures. A vaccine her daughter, my niece, also didn't have either and she didn't have seizures. (Hindsight: sister likely doesn't have the gene mutation, so of course her k...

 Knowing I had seizures related to my period/ hormones in my early 20's of course meant having kids was tainted with some paranoia. However, it had been so long that I hadn't had any more grand mal seizures. My last seizure was a decade ago - the longest time in my life without a seizure and before I even met my husband. We're all good, right? Just a phase that had passed? - Got pregnant - no seizures!  - Lost that pregnancy within days of finding out (talk about hormones all over the place) - no seizures though! - Got pregnant again - no seizures! - Found out we were having a girl (extra hormones in my system) - no seizures!  - Delivered a beautiful little girl like a rockstar - no seizures! ... And then about two hours later, laying in a bed holding my new baby and discussing food since we were all starving, I went into a grand mal seizure.  I could only assume what caused that seizure. A drop in hormones? Or maybe the afterglow/ surge of bonding hormones? Eclampsi...

I think it's important to keep a journal.  I have a beautiful day-to-day calendar that I make notes in. On the monthly page, I mark the days & times seizures happened. Then on the day to day pages, I make notes of what actually happened: - time a seizure started, - when rescue meds were given,  - if we went to the hospital, - if there were med changes - any odd notes from the day that might somehow make some sort of connection down the line (examples: woke up super early, rash appeared after rescue meds, vomited earlier in the day, etc) This is good for reflection and to see changes over time. I know there are likely apps and such for this, but this has helped me. I also find writing it out has been a good (ok, maybe the correct term is more "necessary") way to process what happened as well. Here are the last two years in review: I just marked this off from my notes. This is a little skewed because some of the marks for Daring in January 2020 were myoclonic seizures t...

 So, the "in my sleep, febrile" seizures ended at 14 years old. I remember that last one because I seemed to wake up in the middle of it (at least that's what I thought at the time) - I was being carried on a stretcher and halfway down the steps in our home at the time when I woke up. I remember feeling so cold and I couldn't get my teeth to stop chattering. I had also had a friend spending the night who woke up to me "making a weird noise" apparently, so she went into my little sister's room. Ugh. Embarrassing... but in hindsight, those seizures were "the highlight" of my epilepsy. In the fall of being in my early 20's, I was running on little sleep and high stress. I had a non-profit animal rescue that was in the middle of going back and forth with the town of one of our foster volunteers about pet limit laws. I was driving back and forth between college to attend meetings and such. We even had a lawyer involved. It was October and we ha...

Going a bit out of order here since I haven't even introduced Daring yet, but this just happened so I wanted to post it while it was fresh on my mind... Time and time again the rescue meds we were given from the start did not seem to work for Daring. Although we were given the same meds to use for Darling first, her seizures have never been more than 5 minutes for us to have to administer it. So using the meds with Daring was our first experience with it. Daring's seizures would stop 20+ minutes and I felt "Woo, it's working!" Until I read in some support groups that rescue medications should be working within minutes... if not seconds of giving it. What?! So we spoke to our doctor who suggested: Don't wait the usual 5 minutes - give it right away.  Ok. We do that the next time (of course, there's a next time, unfortunately) . Grab it and give it right away... and it still took forever for his seizure to stop.  Now what? Doctor: "Give both doses, if n...

 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...