Today is Purple Day.  Since 2008, March 26th has been designated the Global Day of Epilepsy Awareness. We are all wearing purple.

Epilepsy awareness is not a question in our house.  We are aware.  It has us on our toes.  Every time Lizzie is too quiet.  Every time she makes an odd sound.  Every time she moves in a repetitive or rhythmic way.  Every time I hear crashing or bumping noises from her room.  I am aware.  I am running before I know why.  Then I do the checks.  Is she alert?  Is she responsive?  Can I distract her from the movements?  Is she breathing?  Is it time to call 9-1-1?

We are aware of epilepsy.

If she is having a seizure, I know the drill.  The first thing I do is check the time and grab the Diastat.  I move her to a flat, soft surface, and roll her on her side.  If she reaches 3 minutes of seizure with no signs of stopping, or if she stops before 3 minutes but then starts again, I give her the Diastat.  Then we call 9-1-1 and wait for them to arrive.  I sit with Lizzie and make sure she is breathing okay.  I make sure she is safe from falling or banging into anything.  I stroke her head and tell her it will be okay, even though I don’t know if it will, while silently praying to God that it will stop.  There’s no time to panic, there’s no time for tears, there’s just time for doing what needs to be done.  Once she’s in the ambulance, I grab her bag and medications, and if Chris is not home, I load her wheelchair in the van.  If he is home I ride with her in the ambulance, and he follows with the van and the chair.  If not I follow her in the van.  It’s not easy, but it has to be done, because I know if they release her she will not be able to go home without her chair, and if they admit her they may not be able to feed her without her chair because it’s far to easy to get tangled in a g-tube when you treat your hospital bed like a crib.

Epilepsy is not a joke.  Some people may think that seizures look funny or that the odd behaviors that some people exhibit when having a seizure are something to laugh at.  I will tell you, when it’s someone you love, it’s not funny.  When their lips are blue because they are not getting air, it’s not funny.  When their bodies a spasming uncontrollably, it’s not funny.  When they have to sleep for a day or two because they are so physically exhausted from the marathon their body just ran without them at the helm, it’s not funny.  When they are so buzzed on meds that they don’t recognize you (because the hospital had to administer horse-sized doses to your seven-year-old just to stop the seizures), it’s not funny.  When your child is still seizing a half hour or hour later and nothing is working, it’s not funny.  When they have to intubate your child and put her on a respirator because she is so medicated she cannot breathe on her own, it’s not funny.  Seizures are not a joke, seizures are true horror.  There is nothing more to say about that.

I wear purple today.  I am aware of epilepsy and what it can do.  How about you?  Are you aware?  Do you know what to do if someone has a seizure?  Do you know what a seizure looks like?

My daughter had seizures for years that no one believed were seizures.  Her lips would go blue.  She would make a clucking sound in her throat with her tongue.  They only lasted 30 seconds.  Then she would nap for an hour.  I kept saying these were seizures.  They happened so fast I couldn’t tape them.  By the time I called someone’s attention to them, they were over.  I even went to lunch with a friend once, and my daughter had one of these.  She saw it and said it didn’t look like a seizure to her.  But I was already looking at the clock on my phone and figuring out where the best place in the restaurant to administer Diastat was.  Later that day, she had a bigger seizure that landed us in the ER and it turned out her medications were low.  I finally figured out that these seizures were warnings that Lizzie’s medications were getting low due to weight gain.  Now we know, but we had to go through a lot of these to figure that out.

That’s the problem with epilepsy.  No one knows what it looks like, because it is different for everyone who has it.  The information is out there, but you have to get it yourself.  I’ve learned more from talking to other people with epilepsy than I have ever learned from the medical community.  That’s sad.

Epilepsy needs a cure.  Yes, there are medications, diets, surgeries, and surgically implanted devices, but a lot of these treatments have worse side effects than seizures.  Some of these treatments are not even available to patients due to conflicts with other health issues the patient may have.  My daughter has been on a medication for years that I know is holding her back developmentally, but is stopping her seizures.  Another medication she’s been on was lowering her blood sodium and possibly causing seizures.  Sometimes the treatments cause the very problem they are meant to stop.  We need something better, and we need it now.

I wear purple for epilepsy.  I wear purple for Lizzie.  Some day I hope that her epilepsy will be cured.  Until then, I continue to research, talk to others, and hope that things will get better someday.  I hope for a cure and I do what I can.