Thursday, May 9, 2013

seizing the day. and night.

this past friday night i found myself where all the fun happens on friday nights.  the emergency room.  shilo had been having seizures and vomiting.  i called the neurology department at the children's hospital, and of course got a random triage nurse as a return call.  just want to know if i can go ahead and give her an extra dose of keppra.  that's what they've told me to do the other two times.  she says, 'take her to the e.r.'  the inconsistency in all of these calls is my favorite.
i decide not to drive the 1-1/2 to the children's hospital, and go local knowing we will likely be transferred.  what is nothing short of a miracle (i know this sounds exaggerated, but seriously, it was miraculous), we had the best emergency room experience we have ever had.  i have only taken shilo here one other time.  she had a virus and i was worried her oxygen saturations were dropping.  i sat in the waiting room for two hours.  and then once the doctor took care of everything, and it was just a virus, she looked at me and said,
'i'm pretty sure it's a virus.  i can write you a script for antibiotics.'
'no thanks.  we prefer to only use them if there is a need.'
'i've given them for less.  it doesn't bother me.'
'we're good.'

and i never wanted to go back and be offered token prescriptions for my child.  i felt as if she might be the type of doctor to offer pain meds to adults.  just because.  so i was hesitant to go back.  but if i drove to the other hospital, it was guaranteed shilo would sleep on the way there, and would wake up fine.  it would be a huge waste of my time, our gas, and they would look her over, and do nothing.
the doctor who took care of us was awesome.  apparently seizing and vomiting get you an immediate back to a room here.  the doctor did labs.  and talked to me about some options.  and looked at her history, and asked me great questions.  he decided after talking to me, looking at her history, and calling the children's hospital (they are all technically in the same network-the whole state is owned by this network for the most part) to increase her dose of keppra.  she had grown quite a bit since it was started.  i can be okay with that.
the almost week since then shilo has been sleepy. a lot.  yesterday she took three naps.  and i don't know if this is due to her increase in meds (although when she started they didn't make her sleepy) or if she's having seizures at night that we don't know about.  most of the seizure activity on the eeg was at night time.
so last night, as we are ready to head to wednesday night church service, shilo has about three seizures that i can notice.  and then she vomits.  we go.  come home.  she seems fine.  put her to bed.  she gets up, and is exhausted this morning.
i call neurology.  i get a call back.  our doctor is out for the week (which makes sense because children only get sick when their actual doctor is unavailable).  the nurse asks me a few questions.  my favorite one was, 'do you skip doses of her medicine.'  i guess you shouldn't do that.  noted.  then says she'll hand her case off to someone and call back.

*side note* if you have ever watched scrubs (we have watched all of the seasons many times) there is an episode where dr. cox says a case can be treated by 'any trained monkey' and holds a banana out.  the doctor who walks by it and says, 'ooh,' grabs it.  he is then designated to treat this case.  i picture this going down as the way they decide who will figure things out for my daughter.

anyway, call back number two says to increase her night dose more.  i then kindly/forcefully make certain the nurse calls the pharmacy, lest i get to the end of our keppra and insurance refuses a refill because we went through it too fast.
they tell me to give her around 48 hours.  if my kid is still having seizures in 48 hours, we will be scheduling an eeg.  when you start meds, you aren't supposed to go from only seeing seizures at night time on an eeg (aside from the three times we had seen something during the day prior) to seeing them more frequently during the day.
sometimes doctors are more than willing to wait it out to see how things change.  what they don't know is that a wait it out approach means that my kid, who was sitting well two days ago, could barely sit today.  she's tired, and out of sorts.  i'm unwilling to let her have, heaven knows how many, seizures at night time that we don't even know about.  seizures aren't innocuous.  and i can't imagine anyone being this nonchalant if it was their child.


  1. Oh wow. How seriously frightening. Hoping this path helps, that something helps.

  2. Wow, just read your post referred by Jessica Pugh. In my opinion (we've dealt with LOTS of seizures) she should be taken in (at the very least) to do an in office EEG. A neuro should be checking, if still actively seizing she made need to be on a constant EEG while adjusting meds. We've had a similar situation and were kept home fiddling with meds, meanwhile Calvin grew worse and worse, we ended up in ICU with major drugs since he'd gotten to "status" point, seizures with no stopping. You are her best advocate! Go with your gut. If there's something still wrong, don't ignore it. Will keep Shiloh in prayers tonight.

  3. Praying you will get the best advice and treatment for Shilo. I've only seen one seizure, in our now 26yr old daughter, when she was 11 months, as the result of a fever. Scary to wonder what's going on with your child.
    Nancy in the Midwest