GeneticEpilepsyJournal

So the last less than 48 hours have been nuts up to this point if you read the first part of this . It's now a little before 9pm that Wednesday night and Darling started to seize again . We called the discharge number for the ER that we were just at and Darling was just starting to come out of the seizure while we were speaking with the doctor we had seen. The doctor said he'd call over to try to speak to neurology at the main hospital we were scheduled to consult with. He said he'd call us back. However, before the doctor could call us back, well, here's what I wrote in Darling's journal: " you jerked up (from being asleep on my chest) & awake. You let out this awful yell noise, then your head started to turn like an owl's and you started to turn blue: freakin terrifying! We called 911 and took the ambulance back to the hospital we'd been at even though you were waking & getting your color back when EMTs arrived. Your other seizures were stress...

Our local drugstore at the time was thankfully right across the street, so husband and Darling headed into our house and I ran over to the drugstore to fill our rescue medication script we had been given ... but they didn't have it in stock.  Ok, settle the anxiety. Sure, you're sleep-deprived and on edge from everything the last few days have been, but settle, settle.  Our local drugstore calls around to other stores nearby and the closest that has the medication is about a half-hour away. Ok, you just want to sleep and snuggle your little one, but this is important. This is one thing we can have on hand to feel like we're doing something productive if she seizes again. So, back out on the road. ( Note from my journal for Darling: "I went out to fill your script and was so tired that I couldn't remember where I parked! Ugh!" ) This drugstore has it, takes the prescription, and fills it. It's under a different code though, is that ok? I have no idea!! They...

From my journal for Darling: " Oh my, girl ... last week we had 3 ambulance rides and 5 hospital trips because of seizures you had... " And some of those trips to the hospital, we drove ourselves.  Welcome back! Thanks for continuing to check in and read up. Feedback and questions are encouraged, if you've got any.  Let's see how this went down, but I'll be honest, the details get more blurry the more sleep deprivation kicked in: On a Monday into Tuesday, Darling had a temp and seized, but stopped before we could even speak with 911. So, we took her ourselves to the local ER where we hung out for an hour or so until Darling was more herself (out of the "post seizure"/ postictal phase) and went home around 2AM to start switching between Motrin & Tylenol to try to control a fever. Getting ready for bed Tuesday night, Darling tensed up (not full body shakes) and relaxed. " What was that? " No sooner could we question it than she did it again -...

We were told after Darling's first seizure that her one might be all that happens ... but if there were more, they'd want to do some testing. Also, Darling's chances of having more if she had a second febrile seizure would greatly increase. She remained well and seizure-free from that one febrile seizure at 11 months old (with a runny nose and low-grade fever) until she was 16 months old when she had another - again, while we were all sleeping.  We went through the motions: - suppository fever-reducer we'd been given back in May for a situation like this - calling emergency - trying to cool her down - putting our dogs away for when "strangers" (EMTs) arrive - unlocking the doors Random note of great appreciation to all EMTs for the work you do and the things you walk into... Like a mom on the floor sitting in a dog bed in the kitchen in just a t-shirt and her underwear rocking her baby and asking that little seizing munchkin to "please wake up" Darl...