International Epilepsy Awareness Day 2018

There are days that stick in your memory forever.  There are days that, no matter how much you want to, you can’t forget.  There have been a lot of those for me.  But today the one that stands out most vividly in my mind is the day I got the phone call from the paramedics.

It was a long day.  It was finally time to go home and I was in the elevator (thank goodness it was one of the ones that is glassed in on one side) heading down to the lobby of the building I worked in.  My cell phone rang.

It was January 2010

It was Squirrel’s number

Is this the mother of Amandya Wells?… male voice on her phone?  My heart froze…

She had been found on the ground in the parking lot (IN the parking lot, not next to it).  It was reported to the school’s police officer that she had been having a seizure.  They were taking her, by ambulance, to the nearest hospital (less than two miles from the school… less than two miles from our house) to make sure she was okay.

That was the beginning.

The ER doctor told us it might be nothing.  You get ONE get out of jail free card.  People have one seizure all the time, it might mean nothing.

28 days later she was sitting on the bottom step of the stairs in our house… the kids were getting ready to go outside for something.

Adam screamed for me to hurry.

I watched her seize on our entry way floor.

If you have never seen your child seize, be grateful.  If you have, you understand.

We all got into the car and went to the ER.  At the time, since we didn’t have an actual diagnosis, it was all we knew to do.  They said… well… it looks like she has epilepsy.  Find a neurologist.  You can go now.  If she has another one in the next few hours come back otherwise, this is your new normal.

We got half way home.

We got half way home……

I was talking to my mom on the phone when Adam (sitting beside Squirrel in the back seat) screamed ‘Oh , daddy stop and go back to the hospital”.  We hadn’t even made it home before she seized again.

Back we went.

They couldn’t get her stable or conscious.

Trip to Dell Children’s Hospital by ambulance… riding in an ambulance holding your little one’s hand is a frightening experience.

She was diagnosed with complex partial seizures with secondary tonic clonic.

We checked out of Dell Children’s on the morning of the most beautiful snowfall.  Austin Texas was getting snow.  About half an inch…. but big fluffy flakes…

That began our adventure.

Skip forward a couple years and Adam’s friend brought him into the house in a postictal condition very similar to what Amandya had with her seizures.

His are not as severe but he has them too.

Today, we are all mostly controlled and we have our whole new normal.

But the purple specter is always there… always just hiding around the corner.


And today is March 26th again.
International Epilepsy Awareness day.

Statistically:

  • When the incidence of epilepsy is looked at over a lifetime, 1 in 26 people will develop epilepsy at sometime in their life.

People with Epilepsy look like anyone else.  You work with them.  You shop with them.  You go to school with them.

What do you do if you see someone having a seizure (if you realize… there are seizures that you really can’t tell are seizures… absence seizures look a lot like someone is staring off into space… although those can be scary too)

  1. Stay calm.
  2. Call 911 if the person is having her first seizure or is pregnant.
  3. Try to time the seizure. Seizures usually do not last longer than 60 to 120 seconds. If the seizure lasts longer than 3 minutes, call 911.
  4. If the person is standing, prevent her from falling by holding her in a hug, or try to help her gently to the floor.
  5. Move away furniture or other objects that might injure the person during the seizure.
  6. If the person having a seizure is on the ground when you arrive, try to position her on her side so that any saliva or vomit can leak out of her mouth rather than be swallowed or go down the windpipe.
  7. Do not put anything, including your fingers, into the person’s mouth while she is seizing. You could chip the person’s tooth, or your finger could be bitten.
  8. Do not try to hold the person down because this can cause injury, such as a dislocated shoulder.

After the seizure:

  1. Check the person for injuries.
  2. If you could not turn the person onto her side during the seizure, do so when the seizure has ended and the person is calm.
  3. If the person is having trouble breathing, use your finger to gently clear her mouth of any saliva or vomit. If this does not work, call for emergency help.
  4. Loosen tight clothing around the person’s neck and waist.
  5. Provide a safe area where the person can rest.
  6. Do not give the person anything to eat or drink until she is fully conscious and aware of her surroundings.
  7. Stay with the person until she is awake and any confusion wears off. Most people feel sleepy or confused after a seizure.

So there you have it…

It is March 26

International Purple Day for Epilepsy Awareness.

Love and Light
April
March 26 2018 (it’s been eight years now… )

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