Tuesday, November 8, 2011

Seizures Stink!

Elise had a Grand Mal seizure last week. She has at least one of these a year, sometimes a few. Her daily seizures can be just as scary, but don’t last as long and don’t involve as much convulsing. When your kid has epilepsy, seizures just become a kind of regular part of the day. Elise’s first seizure was in a Chile’s restaurant in Florida. We were there to attend training sessions for ABR (an alternative type therapy for kids with Cerebral Palsy). I immediately knew that the grimacing and tightening of her body that I was seeing wasn’t normal. One moment I was sitting there eating chips and hot sauce, and the next moment I was watching my 5-month-old baby girl twitching and repeating odd movements over and over again. I knew at that very moment that my daughter had epilepsy. We had hoped to dodge the seizure bullet. Not only did she not dodge it, it hit her square on! That day marked the beginning of a new frightening aspect of Elise’s brain injury- additional damage to her brain and possible death by seizure. Fun stuff!

A few days ago, I had just stepped out of the shower when I heard an unusual sound coming from the master bedroom (Elise has the master b/c of the large amounts of therapy equipment and aids that are needed in her room). Although I had never heard this particular sound before, I instinctively knew that Elise was having a seizure. A big one. I opened the bathroom door to see her lying in her bed, definitely not breathing. She was making a deep guttural noise. Her lips were blue, and her upper body was racked with convulsions. It doesn’t matter how many times you see this happen to your child, each episode feels like the end. The end of her life. The end of having a daughter. The end of Elise. The end.

During earlier episodes of these Grand Mal seizures, we have called 911, and then, on the way to the hospital, put in calls to grandparents and close friends alerting them to the possibility that Elise is dying. After going through this process several times in a row, and each time taking a sigh of relief when she stops seizing and begins to breathe normally again, we became pretty desensitized to the situation. Now, we have emergency medication at home (what the EMTs would give her). We can give her rescue breaths while waiting for her seizure to stop. We have become very good at determining when to wait and when to call for an ambulance.

Some of you may be wondering, “Why wouldn’t you ALWAYS call an ambulance if your child isn’t breathing?” Well, we used to. Elise’s lips can turn blue during smaller seizures that only last a few minutes. This was the typical scenario when faced with these sorts of seizures:

  • Look at Elise and realize she isn’t breathing and is having some sort of seizure.
  • Panic.
  • Call in spouse and argue over what should be done.
  • Wait for 20 seconds or so to see if it will stop on its own.
  • Call 911.
  • Call GiGi.
  • Try to make Elise breathe. Rub her chest, shake her shoulders, sit her up, lay her down.
  • Listen as sirens fill the air and call out all of the neighbors to watch the ensuing scene of panic and chaos.
  • Watch as 2-3 police cars, 1 firetruck, and 1 ambulance pull up to the house.
  • Greet the EMTs and point them to the living room where we have brought Elise.
  • Watch as Elise takes a big breath just as the EMTs enter the room.
  • Pack up into the ambulance even though she seems back to normal.
  • Spend 1-2 nights in the hospital receiving tests that confirm what we already know…

Elise has epilepsy!

After doing this several times and eventually figuring out better ways to communicate with each other, keep Elise comfortable during the seizure, and give her enough time to take a breath on her own before calling 911, we finally got in a groove that has worked for several years. Less hospitalizations and less panic.

This last one, though, crossed the line a little and kind of ruined our “groove”. It lasted quite a bit longer than usual. Chris quickly administered the emergency medication only for us to see Elise have an allergic reaction to it. Of all responses, this one was “neurological”. Nice. The original seizure ended, only to be followed up by a new, somewhat smaller one. She began having severe muscle spasms in her legs and cried on and off in discomfort for about 30 minutes. After calling the doctor and describing what happened, we have decided that next time she has one of these larger episodes, we will pick up the phone and call the ambulance. Better safe than sorry.

Episodes like this last one keep us on our toes! We can’t get too complaisant, or too comfortable in our life with Elise. She is full of surprises. You know what, though? Take any one of these moments that are filled with anxiety, fear, and uncertainty and they don’t even begin to compare to the millions of moments that we have with Elise that are filled with joy, laughter, and deep, deep love.

Do seizures stink? Sure! But there are lots of things that don’t:

Thank you Jesus for… Elise’s ability to laugh. Hard!

Thank you Jesus for… helpful doctors who treat Elise the best they know how.

Thank you Jesus for… Elise’s ability to enjoy pureed food by mouth.

Thank you Jesus for… seizure medication.

Thank you Jesus for… my husband.

Thank you Jesus for… answered prayer.

Thank you Jesus for… therapists who love Elise and help her daily.

Thank you Jesus for… teachers and caretakers who treat Elise as their own.

Thank you Jesus for… extended family who are forever helpful.

Thank you Jesus for… Elise.

This is a picture of Elise during her 1st EEG (along with the one at the top of the post). She was able to get up on her elbows and hold her head up at this point. Not for long. After the onset of seizures, Elise’s physical abilities took a nosedive.

She usually had an EEG repeated after any big episode. Eventually, they stopped doing them, b/c we knew the problem, and she hardly ever had a big one during the EEG itself!

I've been told that her brain waves - all of the time, not just with seizures - are all screwed up (not a medical term!) compared to a typical child with a normally functioning brain. Kind of weird to think about.

1 comment:

  1. Sounds so much like my girl. Her last big seizure 5 weeks ago lasted an hour and we ended up ambulance bound after the rescue meds we gave her had no effect.
    For us as well seizures have been the one thing that has really knocked us off the rails. She has been in status so many times, her longest so far was almost 2 hours and so many times I really was unsure how everything was going to end up. I wish I could take her seizures away if nothing else.
    I hope Elise has recovered from her big seizure last week, I will be thinking of her.