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.

Behavior Therapy

I took my Spring Break, and just didn't do anything but enjoy the time off.  That meant absolutely no blog posts.  :)

Last week, Liz had her first behavior therapy appointment.  Going in to it, Liz was very nervous.  She's very suspicious of doctors as a general rule.  On Wednesday when I told her that she would be going to the doctor the next day, I had to make sure it was very clear to her that there would be no shots, IVs, or any other medical tests.  I promised her that doctor would only talk to her and ask her questions, and I would be with her every single step of the way.

When we got there, she was very nervous, clinging to me and hiding her face.  She noticed that the doctor had a lot of toys, and she was impressed.  She still wouldn't leave my side, though. 

The doctor asked all the usual questions about her development, what the issues were, etc.  I explained about Liz's rages, and she offered up some advice on how to handle them.  All in all, we were there just over an hour, and I left feeling optimistic about what we would accomplish in future appointments.  Better than that, Liz liked the doctor, and she is excited about her next appointment.

I had the opportunity to use the suggestions for Liz's rages on Saturday, and while the rage lasted just as long as the previous ones, it wasn't as violent.  The next day was the best day she's had in a LONG time.  It was so nice.

How very true...

"Life is not what it's supposed to be.  It's what it is.  The way you cope with it is what makes the difference."

I think when you're dealing with anything that is difficult, it's natural to think, "This is NOT how it is supposed to be!!"  I know I'm guilty of it.  How often have I looked at Liz when she's had a seizure or she's in the hospital, and thought that very thing?  Too often...I can't help it sometimes.  I just want her to be healthy.

It has taken me a long time to come to terms with her diagnosis, and become proactive. I can't change the fact that she has seizures.  I'm just not that powerful.  What I can change is how I handle it, and what I do about it.  For me, I go into what I lovingly call, "Crisis Mode."  I handle the emergency as best as I can, and then when all is said and done, I cry.  Then we move on.

One of the reasons advocacy has become so important to me is that it is one of the ways I wage war against epilepsy.  If enough people know about it and understand it, if those people tell the government to spend more money on research or they donate their own money, then I've won.  I've slayed the dragon.

Epilepsy isn't going to ruin our lives.  It has tried over and over again.  It has tried to take away my daughter, but I refuse to give her up.  It can't have her.  She is the best gift I've ever been given, and I will do whatever it takes to keep her here with me.  It can't take away her quality of life.  It can't take away her smiles and her laugh.  It can't take away her love.  And every single one of those things is a victory.  Every time she smiles...every time she says, "I love you, mama"...it's a win.  We're winning our battle every single day.

Maybe our lives weren't supposed to be this way...maybe they were.  I'm not the one to make that call.  But you know what?  We're handling this, and we are absolutely making a difference.

Catching Up

My heart is heavy today.  Nothing terrible has happened, but I'm just so....sad, I guess would be a good word.  I'm yearning for the normalcy of our pre-Christmas lives.  Ever since my daughter was hospitalized for the kidney stones, I feel like we've been in a tailspin, and nothing I'm doing is helping to stop it.

The Carbatrol has affected her moods, and I'm not afraid to admit that it is frustrating.  When her ADHD med and the vitamin B-6 has had a chance to take effect, my daughter is the sweetest person on the planet, but otherwise, she is combative and, at times, downright mean.  She hits.  She kicks.  She bites.  She acts out and tries to cause pain just because she can.  When she's "normal", she realizes why her actions are wrong, and she feels immense guilt.  This morning getting ready for school was particularly difficult.  She tried to kick me several times, and tried to run from the bathroom when I tried to give her morning meds to her.  After a few minutes, it was like her fog had cleared, and she said, "I'm so sorry, Mommy.  I don't want to be mean.  I can't help it, though.  I think there's something wrong with my brain.  Is it sick?"  I cried with her for a little bit, and I told her that no matter how mean she is sometimes, I will always love her, and it's okay because I know she doesn't mean to be mean to me. 

My daughter is one of the sweetest souls ever put on this earth.  This is so much harder than it has been in the past because she is aware of what is happening to her.  She's confused, and no amount of explaining has helped.  For the first time in a long, long time, I don't know what to do.

On top of everything else, she still isn't gaining any weight.  I've been calorie loading that poor child for weeks, and NOTHING has changed.  I'm afraid she needs to go back on medication to make her hungry.

As a side note, I've requested that we see a ENT specialist to see about having her tonsils out.  Since before Thanksgiving, she's been a carrier for strep throat, and she's been getting sick every few weeks as a result.  Every time she's sick, her seizure threshold goes down, and then when we do a round of antibiotics, the threshold goes down again.  It's just not healthy any way you look at it to continue on this path.

I'm just tired.  I feel like every time we get back on our feet, they're kicked out from under us again.  She's been through so much, and I can't help but wonder when enough is finally going to be enough.

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.

New Diagnosis...How Do You Deal?

200,000 people will be diagnosed with epilepsy during 2010.  Isn't that astounding?  200,000 people that either have been experiencing seizures for a long time and they've just come to this diagnosis, or people that will experience a seizure for the first time. 

The first time my daughter experienced a seizure, she was 16 months old.  She had a little cold, and I had just taken her temperature and given her tylenol.  We were sitting in the rocking chair in her bedroom playing a game where she would lean back and when she came back up, I would tickle her belly and she'd giggle.  She'd done this several times, and we were having a fun little time.  Then she leaned back, and didn't come back.  I said her name.  Nothing.  I looked at her eyes.  They were rolled up in her head.  For some reason, I knew immediately what was going on, though I'd never had experience with someone that had epilepsy.  I picked her up and ran down the hallway to our living room, and placed her on the floor on her side.  I called 911, and then experienced seven of the most terrifying minutes of my life.  That was over six years ago.

At first I was told that the seizure she experienced was because of her fever, but I knew that there was something else going on with her.  It took two months and about ten seizures before a doctor would say it was epilepsy.  Then it took nearly six months before we had a decent neurologist that could treat her condition. 

Dealing with my daughter's diagnosis is one of the hardest things that I've been through.  Most people don't understand why a diagnosis of epilepsy is so devastating, and admittedly, I didn't fully grasp what we were entering in to until my daughter had been hospitalized the second time.  I got it then, and I realized that things were going to get bad before they got better, and every facet of our lives was going to be affected.  You really do go through the Five Stages of Grief (Info Here).  I spent a good many years denying that our lives were being affected or that my daughter had lost some of her ability to function as a normal toddler.  When I wasn't in denial, I was angry.  I would cry tears of rage at the drop of the hat.  I wanted to fight someone or something, but how do you fight a seizure?  How do you beat it up?  I didn't spend a lot of time bargaining, hoping that if I just did this then she would get better.  I knew then that it wouldn't work.  I did become very depressed, and it took over a year for me to work through it.  I ended up going to a doctor, and going on antidepressants because of it.  Then I finally accepted what is going on, but that didn't happen until I made the decision to become active in epilepsy advocacy and get word out.

Suggestions for dealing with a new diagnosis:

1. Information is your friend and your weapon.  When my daughter was first diagnosed, I felt like I had been thrown in an ocean and expected to know how to swim.  I had no idea what her official diagnosis of "Complex Partials with Secondary Generalization" meant.  I had no one to ask about it either.  Because of this, I hopped online, and went to the Epilepsy Foundations's website, and read as much as I could.  I also read the book Seizures and Epilepsy in Childhood: A Guide (Johns Hopkins Press Health Book).  That book made me feel like I'd finally been given the rules to a game I didn't know I had been playing.  Gain as much information as you can.  It will not only help you understand what is happening during a seizure, but it will also help you see future symptoms and know when they are something worth mentioning.
2. Begin keeping a seizure log. Time the seizures, and write down what's happening before, during, and after.  It helps with doctors' appointments, and it also helps make any triggers or patterns obvious.  Plus, it gives you a certain amount of control over the situation, and in my opinion, the worst part of epilepsy is the lack of control over what is happening to you or your child's body. 
3. Know about treatments and their side effects.  Know the drug names and what they can do to the body.  Side effects can range from dizziness to swollen gums to liver failure to low blood count.  Keeping a check on the side effects is important because they can be more dangerous than the seizures.
4. Keep and open dialogue with your doctor, and ask lots of questions. This one is still in the vein of gaining information.  Pretty soon you're going to realize that your biggest ally in this should be your doctor.  I think of my daughter's neurologist as the unofficial fourth member of our family.  He always returns my calls, and he always has time for my questions.  The icing on the cake is the fact that when I share my thoughts on what is going on, and make suggestions for how to proceed, he listens and often times, he agrees with me.
5. Find others in your shoes, and talk to them.  The Epilepsy Foundation has a wonderful forum that allows people to talk to others like them.  The Parents Helping Parents Forum is especially helpful, and wonderfully supportive.
6. Find your own personal support network.  Whether it be friends or family, every person that's dealing with a new diagnosis needs someone to talk and vent to.  I'm lucky in that I've got a wonderful group of friends, and an amazing family that has been there with me every step of the way.  However, I've known parents that their families have told them that epilepsy isn't a real diagnosis, and they're over medicating their children because they don't want to deal with them. 

Dealing with a new diagnosis isn't easy, but if you can maintain a feeling of control over the situation, it helps.  It won't make everything all better, but it definitely will help.

What is so funny?

Anyone that knows me (and most of my readers at this point are people that know me) is aware of how much I hate it when people laugh at epilepsy and those who have it.  Nothing grinds my gizzard as much as a group of people that should know better laughing it up about someone who looks like they're having a seizure.  Actually...the videos that are supposed to induce a seizure with flashing lights really tick me off, too. I like to believe that people find humor in this because they simply don't know what is happening to the human body as a person is having a seizure.  That's part of the reason I started this blog.  I want to educate and help people so that maybe I can change people's perceptions of things they don't understand.

When I'm explaining seizures to someone that's never seen one before, I ask them what happens to their satellite reception on their TV when there is a bad thunderstorm.  Most of the time, they tell me that it freezes up, but after the storm passes, their reception comes back, even though it might still freeze up for a little while until the connection fully resets.  I then liken that to a seizure.  A seizure is when electrical impulses in the brain start being over active to the point that it causes your body to convulse, or you to stare, or lose muscle control and hit the floor, etc.  It can last for a few seconds or hours, but once the electrical impulses calm down, then the brain resets, and you start to recover.  The recovery period is known as the post-ictal period, and can take minutes or hours complete.  Essentially, your brain is recovering from the massive overload of activity that it has just experienced.  Most of the time, the person sleeps during the post-ictal period, but my daughter often exhibits dark circles under her eyes, pale skin, and she's very lethargic. 

Have you seen what happens to a child (or anyone, for that matter) when they have a seizure? Do you know what it looks like to see someone tiny having their body wracked by spasms and convulsions?

This a video of a little girl named Bella.  Her parents posted this video on YouTube to educate people about epilepsy.  Can you tell me what is funny about this little girl having a seizure?  Is there anything remotely humorous about this toddler's brain openly declaring war on her body?

When the video opens, Bella is having a Tonic Clonic seizure.  Notice that her parents have her on the floor, with anything that she could harm herself on cleared away.  She is laying on her side, and her mother is sitting next to her, but not restraining her or putting something in her mouth.  Everyone is remaining calm.

When the seizure stops, you hear Bella take a big deep breath and she stops convulsing.  Her mother comments about how fast her heart is beating, and you can hear Bella continue to take deep breaths, almost as if she is panting.  Most literature regarding the muscle spasms that are experienced during a seizure liken it to running a full marathon in just a few minutes.  As Bella continues to breathe deeply, you hear her father (who is filming) ask the mother about the temperature change being a possible trigger.  ANYTHING could be a trigger for a seizure.  The key is figuring out what yours or your child's are.

You see Bella open her eyes, but there is zero recognition of anyone or of the situation.  She is still in her post-ictal period, recovering from the seizure that she's just experienced.  You hear her mother comment on the fact that it is a Tonic Clonic seizure (previously known as a Grand Mal), and that she will be sleeping for awhile.  All this time, Bella is still breathing heavily, which is completely normal after experiencing a Tonic Clonic seizure.  She hasn't had regular breathing for the length of the seizure, and her body is recovering from that.

The mom comments on the length of the seizure as being around 2 minutes.  It is so important to time a seizure.  You can make a log of it, and let the doctor know about the length.  Her mother then comments about the difference between a Tonic Clonic and Complex Partial, which is just different types of seizures (my daughter experiences both as well).

Was there anything funny about that video? 

This Is My Issue

Last night I was perusing my satellite guide, and noticed that the fund raiser for autism awareness and education was on Comedy Central.  Despite my daughter's innate hatred for all things related to John Stewart (She loves Stephen Colbert, though), I tuned in for a bit of time.  It was interesting, and of course funny...well, as funny as autism awareness can be.  I found myself becoming bitter, though.  Not towards autism.  No, that would be weird and wrong.  I'm becoming increasingly bitter about why autism is getting all this attention and heightened awareness, but epilepsy gets nothing.  Nada.  Zip.  Zilch.  Zero.

1 in 110 children will be diagnosed with autism this year.  Compare that to 45,000 children under the age of 18 developing epilepsy every year.  I'm not a big math whiz, so I can't really begin to put the epilepsy numbers into a ratio, but my head is telling me that at the very least, the numbers are comparable. 

I think it is wonderful that autism is getting the attention it deserves, and people are becoming more sensitive to all things related to autism.  You see autism on television shows, with characters dealing with their child's diagnosis (Parenthood, ABC).  You see rock starts advocating for autism awareness/support.  You see movie and television starts making appearances for fund raisers to go towards autism research.  It's all wonderful progress. 

When is it going to be epilepsy's turn, though? We have Greg Grunberg.  Who is that, you might ask?  He was on Heroes on NBC, and his son has epilepsy.  He's a super big advocate for epilepsy awareness, support, etc.  He does admirable work, but let's face it, he's not a big enough star to really shake things up.  We need Angelina Jolie or Miley Cyrus or Matt Damon to start getting the word out.  Seriously!!

I do what I can from here.  I have my sticker on my car.  I talk to my high school students about epilepsy and what it means.  I wear purple on the appropriate days.  I support and advertise November as Epilepsy Awareness Month.  I'm just one person, and starting a movement from almost literal grass roots is a little difficult.

So, this is what I want you to do.  Research epilepsy.  Find out what it means to have it.  Email me.  I'll put my email address down at the bottom.  Follow me on Twitter (@marisarocks) and ask me questions.  Advocacy begins with knowledge, and knowledge needs to be sought after.  We can only gain support and end the stigma if people are willing to put the in the time and energy to make it happen. 

Help me out here, huh?

My Email:

holland.marisa@gmail.com