Today

Today is the last day of Epilepsy Awareness Month.  I can't believe how active this month has been.  I love how many people are visiting this blog, and how many people are responding to it.  I especially love how the student council in my school has become active, and passionate about epilepsy awareness.  Last night, I thought to myself, "If I ONLY reach the 40 or so kids at his meeting, then I'm successful.  I can be proud of my work."  I'm not stopping, though.  Nope.  We're going to keep this train right on rolling.

Today I can look at my daughter and know that she is the healthiest that she has ever been.  I can sit next to her while she is reading her library book out loud and marvel at how much she has changed and grown in the last few years.  I can look at our journey, and be thankful for the bumps because it makes the smoothness so much sweeter.

I don't know when she'll have another seizure.  The very thought of another one hitting terrifies me, though.  It is so difficult watching your child go through something that you can't protect her from.  I can keep her safe from all kinds of evils, but I can't protect her from her own brain.  It's a long, long road to acceptance of that fact, and while I may be afraid of what could happen at any time, I refuse to dwell on that.  I refuse to feel sorry for myself or her.  We have a good life.  SHE has a good life.  I love embracing that.

Here's to the last day of Epilepsy Awareness Month, and let's hope that what we've learned and the awareness gained lasts all year long. :)

Experiences with School Nurses

When my daughter started school within the district that I teach, I provided her school nurse with a short informational packet in regards to her condition.  I thought I was being smart.  It's what most parents would have done in a similar position.  I provided typical symptoms of an oncoming seizure, description of the seizures themselves, medications, and other prudent information. 

The school nurse at her first elementary school was intimidated by my daughter's diagnosis.  There's no other way to describe her behavior in regards to my daughter after she found out about her seizures.  Every time the wind changed, I'd get a phone call asking me to pick her up because she was "exhibiting odd behavior."  One time, my daughter got angry at another kid, and her face turned red.  The nurse called me all upset because my daughter had broken out in a rash, and she was "concerned about her being contagious."  I had a friend pick her up, and I rushed home to get her.  She was absolutely fine, and the school nurse knew it.  It was just the beginning of trying to get her out of the school as much as possible because she was so scared of her diagnosis.

The straw that broke the camel's back was the nurse telling me that my daughter "didn't belong in public school."  I'm not entirely sure what I said afterwards, but I can assure you that it wasn't kind.

My daughter is at a different school now, and the school has a new school nurse.  We're experiencing a similar situation with this school nurse.  In the last two weeks, she has called on two separate occasions, telling me that my daughter has had a bathroom accident, and she's running a low grade temp.  Could I please pick her up?  The first time I did pick her up, and I took her to the doctor.  The doctor couldn't find anything wrong with her kidney function (she's had kidney issues in the past), but did discover that she has a minor bowel obstruction, and that is putting pressure on her bladder, which is causing all of her issues.  It's an easy fix.  The nurse still calls, and really wants me to pick her up from school. 

Sadly, my experiences with my daughter's school nurse is not unusual.  If you take a survey of parents with children diagnosed with seizure disorders, most of them would probably tell you that they are unimpressed with how their child's school handles their child and his diagnosis.  In my daughter's case, she's not had a seizure at school in years, and yet, the nurse is so jittery about her diagnosis, she makes up reasons for her to be sent home.  I've talked to parents that have dealt with schools threatening to sue the parents because they are uncomfortable with the child being on campus.

The thing is...there's this fedral law that mandates that every child is entitled to "a free and appropriate public education." (FAPE) Is sending my child home at every opportunity (contrived or otherwise) really meeting that criteria?  No...it's not, and yet, I'll continue to battle this woman at least once or twice a month until the school year is over, and then probably throughout her time at that school.  It will be exhausting, and we'll end up hating each other.  I'm hard headed, and I'll always, always win.  I know my daughter better than anyone, and to have someone that doesn't know her but has a medical background tell me what she thinks she needs is insulting. 

Today was a pure venting post.  I'm off to email a principal, and let her know my expectations of the school nurse.  I imagine it's going to be a long school year from here on out.

Article on Coping with Epilepsy

This is an article that was written about a woman in Sioux Falls, South Dakota.  She talks about how her life has changed since she started to experience seizures.

Coping With Epilepsy

The next link takes you to a video from Fox News.  David Axelrod is President Obama's senior adviser, and his daughter has dealt with epilepsy for most of her life.  It is definitely worth watching.

David and Susan Axelrod Talk About Their Daughter

As a sidenote, Susan Axelrod is one of the co-founders of CURE (Citizens United for Research in Epilepsy).  The link to the group's website is included in the list of important links on the side of this blog.  I encourage you to visit this site.  It is definitely worth your time and energy. 

I've been sorely lacking in my postings lately.  Preparing for the upcoming holidays mixed with the recent release of Harry Potter has taken up a good part of my extra time.  I will do better. :)

Have a great Thanksgiving everyone.

Epilepsy Really Stinks Video

Final product...enjoy!!

An Experience I Had Today

I teach high school.  Every year on the first day of school, I explain to my students about my daughter and her diagnosis of epilepsy.  I show pictures.  I explain what her life has been like, and situations that could cause me to be absent.  Once the school year starts, I openly discuss seizures and epilepsy whenever the opportunity presents itself.

Today in one of my classes, I had a student that put his head down on his desk, and pretended to shake.  I looked at him, and said, "Really..?"  He said, "Oh, yeah...uh.  Yeah.  I know you don't think it's funny, but I really don't care about that.  I'm not apologizing."

I'm having mixed reactions. 

Part of me wants to leave my classroom and go cry.  I'm so angry.  I've requested that he be removed from my class immediately.  I can't promise that I'll be nice to him ever again.

The rest of me sees that his reaction and general attitude is the biggest reason why we need epilepsy education.  His behavior and general ignorance is the reason I am fighting this fight.  I am going to change the world, and I have to start somewhere.

I'm going to wear a purple ribbon.  I'm going to wear my epilepsy awareness shirt on Friday (Note to self: make/order one).  I'm going to be so annoying with epilepsy awareness that people like that can't say a word without someone else jumping on him.

People like that can't win.  I absolutely refuse to let them.

Epilepsy Really Stinks Campaign "Commercial"

This is my Epilepsy Really Stinks "commercial."  I'm going to use it to show our student council joint meeting in order to hopefully gain the support of the four local high schools in doing a district-wide epilepsy awareness campaign.

I'm working on the music portion.  It's still a work in progress. :) 

Some thoughts...

Last night a young lady told me about how my daughter's story regarding her diagnosis with epilepsy made her think about a friend of hers.  When she was a little girl, she and a friend were playing and the friend said, "Go get your mom.  Now."  Her friend then had a seizure.  She described what it was like being young and holding this girl while she had a seizure, and how terrified she was.  She told me about her mom trying to calm her down and call emergency services.  She said that later that friend died because of her seizures, and that it was hard on her and her cousin losing this person. 

Yesterday afternoon I was putting epilepsy awareness flyers up around the school, and I noticed a young lady standing there staring at me.  I glanced at her, and she said, "My brother has epilepsy, and I've had a seizure before.  Thank you for doing this."  Then she walked off.

Those two young ladies are part of the reason why I am an advocate for epilepsy awareness.

I think sometimes I annoy people with my constant talking of epilepsy and building epilepsy awareness.  I share my daughter's history with anyone that will listen to me because I believe it is important to share what's happened to her with others to build an understanding. 

I will never stop sharing these things.  I will always be working to build awareness for epilepsy so that people understand what it is and what it isn't.  I won't be happy until more money is allocated from the federal government for research into cures for epilepsy.  I want to see every star in Hollywood wearing a purple ribbon to the Oscars.  I want every person that sees the word epilepsy to know exactly what that means, and know that it isn't anything to laugh at.  I want those idiots that post "funny" videos on YouTube about seizures and flashing lights to know that they aren't funny, but they are hurtful and ignorant. 

Three million people in the U.S. have epilepsy.  One in nine people in the U.S. will have a seizure in their lifetime.  Put yourself in the shoes of someone having a seizure.  Would you want people to stop, stare, and laugh, or would you want them to help you and know exactly what to do to make sure that you're safe? 

Join me in being an advocate for epilepsy awareness.  When you think about it, how could you not?

Epilepsy Awareness Month-Part 5

MYTH #5: EPILEPSY IS RARE

Epilepsy is definitely not rare. Current estimates are that about three million people have epilepsy, and two hundred thousand people will be diagnosed with epilepsy this year alone.  Epilepsy is the most common neurological condition.


I'm very open wth my daughter's diagnosis of epilepsy.  It's probably to the point of obnoxiousness, but I have a hard time caring about that.  Nearly every time I say, "My daughter has epilepsy," someone says, "Oh!  I know someone with epilepsy!!" If it was such a rare condition, would most people be able to say that?

Epilepsy from the patient's view-short teaser trailer

Epilepsy Awareness Month-Part 4

MYTH #4: PEOPLE WITH EPILEPSY LOOK DIFFERENT.

Every time I have ever shared our experience with epilepsy, someone has said, "Wow!!  I can't believe your daughter has been through all that!!  She doesn't look different!!"

Well, that's because she isn't different.  She's a child with a medical condition.  People with epilepsy don't look different.  There's not an outward marker of it.  They don't wear giant E's on their jackets to signify their medical conditions.  You wouldn't expect a person with diabetes or a heart condition to look different.  Why would someone with epilepsy look different than someone without?

To a certain degree I can understand what they are thinking.  In my daughter's case, she has been through so much trauma that you would think that there would be an outwardly physical manifestation of it.  Sometimes I'm guilty of that, too.  I look at her and think, "She looks so normal.  No one would ever believe what she's been through just by looking at her." 

Most people with epilepsy are highly functioning individuals.  They have jobs.  They go to school.  They have family and friends.  They have hobbies and activities that they enjoy.  Their lives are not consumed by their seizures.  It's a small part of their lives.  They have one, they handle it, and they move on.  When my daughter is in good health, we aren't dictated by her seizures.  We take small precautions, but don't limit our activities.  She plays baseball.  She goes to school.  She's active in her after school program.  She lives the life of a "normal" child because 90% of the time she is a normal child.

One last thing before I post for the day:  Don't pity people with epilepsy.  They don't need it.  They need understanding and support, but not pity.  If you feel yourself leaning towards pity, reach out and try to understand what epilepsy is, and how to help.  Pity doesn't help anyone.  Ever.

Epilepsy Awareness Month-Part 3

MYTH #3-THERE IS ALWAYS A MEDICAL CAUSE FOR EPILEPSY AND SEIZURES

Typical medical causes of epilepsy include:

• Imbalance of chemicals within the brain that transmit electrical impulses
• Hereditary causes
• Other medical disorders that cause seizures (brain tumors, lesions, encephalitis)
• Head injury
• Prenatal injury
• Drug/alcohol abuse
• Exposure to lead, carbon monoxide, toxic chemicals

In three-quarters of cases of epilepsy, there is no medical cause.  The person has not experienced any of the causes listed above.  So, clearly it is quite common to experience seizures for which there's no apparent cause.  Add in the fact that their MRI, CAT scan, and EEG are all normal, and the diagnosis of epilepsy can be quite frustrating.  This diagnosis is called idiopathic epilepsy, and this epilepsy usually responds well to medical treatments. 

My daughter's epilepsy has no cause, and with the exception of the drug Trileptal, she has responded well to drug treatments.  At first I was frustrated that no one could tell me why this was happening to her, but after realizing that any causes would be worse than the seizures, I accepted that most of the time her brain functioned normally.  When it didn't, there won't be a reason to explain away the why's. 

My acceptance was helped along by gaining an understanding of what was happening to her brain and body when she began to experience a seizure.  Information quickly becomes your biggest ally and your biggest weapon when you're fighting the battle against epilepsy.

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.

Delayed Post

Good morning!!

I've got a very full day ahead of me, so my blog update will arrive later this afternoon. 

Thanks for understanding!!

Re-Posting Seizure First Aid

Seizure first aid is so incredibly important that I'm re-posting the seizure first aid post.

When providing seizure first aid for generalized tonic clonic (grand mal) seizures, these are the key things to remember:

• Keep calm and reassure other people who may be nearby.
• Don't hold the person down or try to stop his movements. 
• Time the seizure with your watch.
• Clear the area around the person of anything hard or sharp.
• Loosen ties or anything around the neck that may make breathing difficult.
• Put something flat and soft, like a folded jacket, under the head.
• Turn him or her gently onto one side. This will help keep the airway clear.
• Do not try to force the mouth open with any hard implement or with fingers. A person having a seizure CANNOT swallow his tongue. Efforts to hold the tongue down can injure teeth or jaw.
• Don't attempt artificial respiration except in the unlikely event that a person does not start breathing again after the seizure has stopped.
• Stay with the person until the seizure ends naturally.
• Be friendly and reassuring as consciousness returns. 
• Offer to call a taxi, friend or relative to help the person get home if he seems confused or unable to get home by himself.

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!!