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.