Dear Epilepsy...

Yeah, yeah, yeah....sorry.  It's been a rough year.

August came and went, and with it the ten year anniversary of Liz's first seizure.  I wasn't going to say anything about it because that's not exactly the kind of anniversary you celebrate with lot's of fanfare, but I started thinking today about what's happened in the last ten years.

• I graduated college cum laude with my degree from ACU.
• My mother died.
• I got a divorce.
• I started my first teaching job.
• I re-met the man I would marry.
• I moved to Central Texas.
• I got a new teaching job.
• My father died.
• Liz was hospitalized countless times.
• She had countless seizures.
• She acquired viral meningitis from a water park.
• She had a kidney stone.
• She switched meds several times.
• We bought a house.
• I got married to the best dad Liz could possibly have.
• Liz had dozens of EEGs.
• She landed herself in a coma after a seizure that lasted three hours.
• She was airlifted to Ft. Worth twice.
• She passed every standardized test given in the state of Texas.
• She repeated Kindergarten.
• She started a school that truly LOVES her.
• She instantly wins over everyone she meets.

I'm forgetting things.  I know I am.  How do you summarize ten years of a family's life in a handful of bullet points in a blog?  It's difficult!  Those are the things I thought about, though.  Then I started thinking about what I would say to epilepsy if it were a real person that had been with us for the last ten years.  I started to write a letter in my head, and I thought, "You know, you have  blog that you've left unattended for a long time.  It's Epilepsy Awareness Month.  You should type up the letter and post it."  So, here you go.

Dear Epilepsy,

When I first met you over ten years ago, I didn't believe you'd be around this long.  That first night you broke into our lives, I hoped you were a fluke.  A weird health scare that would pass, and our lives would go back to normal.  That first night you showed yourself, I was scared nearly to death.  Holding my sweet sixteen month old baby girl in my lap, we'd been playing a game of peek-a-boo when you snuck in and took her from me for ten terrifying minutes as I watched grown men in official looking uniforms administer first aid to my tiny little girl, eventually loading her up and hauling her to the closest ER.  Watching her convulse and turn blue was just the beginning of the terror, though.  You'd reassert your position in the family many times after that night.  I hate you for it.

After her diagnosis, I spent years wondering why this had happened to my child.  Every time I stood by helplessly while you took minutes, or hours, from her while also stealing her cognitive abilities, I cried out to the heavens above, demanding an answer....WHY?!  Why my child?  What had any of us ever done to earn this horrible condition in our lives?  Eventually, though, I stopped asking why.  I was driving myself crazy with research and questioning, and at one point I realized that there wasn't an answer for me.  God wasn't going to come to my door and offer up a sheepish explanation of what brought us here.  What else could we do but accept it and move on?

Eventually, you moved to a secondary position in our lives.  We learned to live with your shadow standing over us.  We learned how to handle your presence, and eventually, you moved from being a constant fear to a niggling concern.  We know you're there.  We see you every day in some way, whether it's actual seizure activity or Liz struggling to do basic math or remember how to spell Kindergarten sight words.  We refused to let you control us, though.  Every so often you remind us that you're around, though, as if we could ever forget.  We take the time to acknowledge your presence, handle the emergency, and then we pick up and move on.  Do you know why that is?  Because you can't take our hope.  For every EEG with tears because it's uncomfortable, for every hospitalization, for every minute spent on homework with tears, for every pill, for every MRI, for every doctor's visit, for ever single seizure, we have millions of more minutes of happiness that you absolutely cannot take from us.  We resolutely refuse to let you.  You may not ever leave our lives, but we are done suffering your presence.  

For every time there is a this: 

We have hundreds of these:

Regards,

Me.

Epilepsy Awareness Month-Part 2

Sorry for the late posting.  I'm helping the student council at my high school plan a large Epilepsy Awareness Campaign based off of my blog.  It's going to be called "The Epilepsy Really Stinks Campaign."  I'm excited to get it started.  We'll be making epilepsy awareness posters to post around the school.  I'd like to appear on our school announcements with information about epilepsy.  And...the thing I'm super excited about...we're selling epilepsy awareness bracelets.  Think the Livestrong Bracelets, only purple.  They'll say...wait for it...Epilepsy Really Stinks.  :)

MYTH #2: EPILEPSY IS NOT DANGEROUS.

There are so many reasons why this one is a myth, and most of them are for obvious reasons.  However, do you know how many parents and individuals are told that a diagnosis of epilepsy is no big deal, the patient will go on medication, and their lives will be just like they were before the first seizure?  For the majority of people this is simply not true.  In a perfect world, the first medication tried would work, and there wouldn't be any horrible side effects.  There wouldn't be any brain damage, and life would continue like it was before. 

I was told that it was nothing to worry about.  In fact, the first time my daughter was put on medication, she was put on half a milliliter twice a day.  That's not even enough for your body to digest and metabolize.  The doctor simply believed that it wasn't anything to be concerned about, and he sent us on our merry way.  Less than six months later, my daughter had a thirty-seven minute seizure, and it became painfully obvious that epilepsy was definitely something to worry about.

There are the obvious things that make seizures dangerous.  You have the lack of oxygen moving through the body.  You have the accelerated heart rate.  You have the convulsing that could cause your body to hit something and harm it.  Imagine that your body isn't getting adequate oxygen for over half an hour.  Imagine that your heart rate is accelerated to over 250 beats a minute.  Doctors are telling me this isn't dangerous.  Yeah, right.

Then there's SUDEP (Sudden Unexpected Death in EPilepsy).  It's exactly what it sounds like, and it's the parent of a child with epilepsy's worst nightmare.  A person can not have seizures for years, and then suddenly die because of their seizures.  Five hundred people a year die because of SUDEP.  It's a big enough issue that there's an entire support group through the Epilepsy Foundation for loved one's of those lost.  It could happen to anyone with epilepsy at any given time. 

There's the brain damage associated with prolonged seizures.  Three years ago, my daughter was diagnosed with unchanging, non-degenerative brain damage.  It's called Static Encephalopathy.  It won't get worse unless she has another set of massive seizures, but it's not going to get better either. 

The medicines aren't much better.  For example, Depakote is an often used medication to control tonic clonic seizures.  It is very effective.  It can cause your liver to fail, and suppress your platelet count without you even realizing it.  Another example, Zonegran is a support medication that is used to control all different kinds of seizures.  It causes the person to no longer perspire, dizziness, and in some cases kidney stones.  Dilantin causes your gums to swell and in some cases bleed. 

Common Side Effects of MOST Medications:

• Prolonged Fever
• Rash
• Severe Sore Throat
• Mouth Ulcers
• Easy Bruising
• Pinpoint Bleeding
• Weakness
• Excessive Fatigue
• Swollen Glands
• Lack of Appetite
• Increased Seizures

Did you notice the last one?  That's right.  Some medications can INCREASE seizure activity.  I learned this first had when my daughter was on Trileptal about five years ago.  She went from having a few seizures every few weeks to dozens of seizures a week.  The doctor and I have discussed this many, many times, and we've both agreed that it was a mixture of the Trileptal and the massive seizure she had in April 2005 that caused the increase in seizures.  When medicating for epilepsy, it's often trial and error, and unfortunately, there's a lot more errors than successes.

I believe this is why so many people with new diagnoses are blindsided by the full meaning of epilepsy.  It clearly is a big deal.  Life won't be the same as it was before.  Soon you'll be taking emergency meds with you where ever you go.  You'll have a stop watch in your purse with your child's seizure long and emergency information.  You'll have their care notebook in the trunk of your car.  You'll know what your child's face looks like right before one hits, and what each breath means during a seizure.  You'll be able to reassure a salesperson at a store that is in a panic because your child is having a seizure..."No, it will be fine.  I don't need an ambulance.  Could you keep people clear of the area?  No, we're okay.  Thank you, though.  I promise it will be okay.  She does this all the time.  Thank you.  Please don't cry...."  You'll be on a first name basis with your child's neurologist, and send him Christmas cards because he's part of your family.  You'll have the neurologist's phone number memorized before even your husband's phone number....

You'll have a new definition of "normal."  You'll hate it, but you will come to terms with it.

Epilepsy Awareness Month- Part 1

Good morning!!  I hope everyone had a nice weekend.  I usually try to take my weekends off from blogging, and spend some quality time with my family.  Our lives are so busy during the week that by Saturday, we desperately need that time to touch base with each other. 

This morning I was trying decide what to blog about today in regards to Epilepsy Awareness Month.  There's so much that I want to accomplish with my blog, and sometimes I get overwhelmed with the topics that I could discuss.  I finally decided that each day of the month that I post a blog, I will address one myth associated with epilepsy.  Hopefully by doing this, I can set a few people straight.

This first myth is one that is a personal pet peeve of mine.  I figure it's best to just get it out of the way now.

MYTH #1: A PERSON THAT IS HAVING A SEIZURE CAN SWALLOW THEIR TONGUE, SO YOU NEED TO PUT SOMETHING IN HIS/HER MOUTH TO KEEP THAT FROM HAPPENING.

This one is not true on any level!!!!!!  Do me a favor, but first look around and make sure no one is watching you.  Don't worry.  I'm not going to ask you to do anything inappropriate.  I'm just trying to spare you some awkward looks and embarrassment. 

You good?  Okay. 

Open your mouth and stick out your tongue.  Now, life up your tongue, and feel underneath it.  Feel that sliver of tissue that attaches your tongue to the bottom of your mouth?  Yeah.  That's little sliver of tissue keeps your tongue in your mouth.  If it wasn't there, your tongue would definitely slide right down the back of your throat.  That sliver of tissue doesn't just suddenly go away when you're having a seizure.  It's pretty much a permanent fixture in your body.  IT IS PHYSICALLY IMPOSSIBLE TO SWALLOW YOUR TONGUE DURING A SEIZURE, OR AT ANY OTHER MOMENT IN TIME.

Sticking something in a seizing person could hurt them badly.  You could break their teeth, break their jaw, cut their tongue, or cut their mouth.  It is best to just leave the mouth alone.  You may start to see blood coming from their mouth, and this is most likely due to the person biting their tongue during the seizure.  It is best to wait until the person is finished seizing, and clean up their face afterwards. 

As always, if a person has a seizure, place them gently on the ground, and clear any objects away from them.  Place the person on his/her side, and see if you can find something to cushion their head (pillow, sweater, blanket, etc.).  Stay close to the person, but do not restrain him/her.  This could hurt you both.  Time the seizure, and talk to the person as they are seizing.  Tell them your name, and that you are there to help him/her.  I talk to my daughter the entire time she's seizing, and afterwards.  My biggest fear is that she can hear what's going on, and she's afraid because she thinks that she's alone.  Call an ambulance after the person is situated and safe.

After the seizure when the person wakes up, the person is going to be confused.  Hopefully medical personnel have arrived by that point, but if they haven't, keep the person laying down until they do.  Once they get there, they'll take over.

See you guys tomorrow!!