1 in 26



Approximately 1 in 26 People in the United States Will Develop Epilepsy at Some Point in their Lifetime

      Epilepsy is a chronic condition of the brain that affects people all over the world. It is characterized by recurring seizures-- which are physical reactions to sudden, brief, excessive electrical discharges in brain cells. Anyone, anywhere, at any time can have a seizure.

     The physical reactions of a seizure depend on which part and how much of the brain is impacted by the excessive electrical discharges. Although most people think of a seizure as a full-body convulsion, seizures can also be brief muscle jerks or unconscious behaviors like picking at clothing or what appears to be a lapse of attention, like daydreaming.

    The frequency of seizures varies greatly, from once in a while to several per day.

    More people live with epilepsy than with autism spectrum disorders, Parkinson's disease, multiple sclerosis and cerebral palsy – combined.

     Epilepsy is one of the world's oldest known medical conditions, and yet too many people do not understand it. In too many cases, this misunderstanding has led to fear, discrimination and social isolation.
    Together, we can reduce the fear and misunderstanding, so the lives of millions of people around the world -- people living with the condition and their loved ones -- will be forever changed for the better.

Epilepsy Stats

65 MILLION: Number of people around the world who have epilepsy.

OVER 2 MILLION: Number of people in the United States who have epilepsy.

1 IN 26 people in the United States will develop epilepsy at some point in their lifetime.

BETWEEN 4 AND 10 OUT OF 1,000: Number of people on earth who live with active seizures at any one time. 

150,000: Number of new cases of epilepsy in the United States each year

ONE-THIRD: Number of people with epilepsy who live with uncontrollable seizures because no available treatment works for them.

6 OUT OF 10: Number of people with epilepsy where the cause is unknown

Did you know that more people die every year from epilepsy and related causes than from Breast Cancer???

Yet, epilepsy doesn't get even half the amount of funding and awareness.

Breast Cancer is a very important cause, no doubt.

But how much Pink do you see vs. Purple????

We need to find a way to change that

Happy Birthday! Here's a Grand mal for your birthday( #4)

We had a trip to the river planned for Arthur's birthday. The house was all decorated the night before, so to celebrate in the morning.

( Not Arthur, but you get the idea)

This is the tradition in our house.

We woke him up. He had had a good nights sleep.

He lit up when he saw the decorations and came outside to say good morning to everyone as we were packing the car.

I turned around for a second and Bam!

 He was down on the ground......Happy Birthday here's a Grand Mal.

When he would have his Grand Mals, he just checked out. Became stiff as a board and fell to the ground.

Face would turn blue, as he would be barely breathing.

We would talk him through it and after what seemed like an eternity he would start to breathe.

Like always he would need to sleep for a while.

I don't know if it's considered an upside, but he never had any recollection of these events. He still doesn't. It's as if time stands still for him.

"Did I have a seizure?"

In the next 5days he had TWO more Grand mals.

Let me tell you, the river is not the place you want to be during all this.

I made several phone calls to the neurologist. He upped his dose, don't wean his dose, don't give this...blah  blah blah.

All we knew was.........

It was getting worse.

As a family we could barely function.

 Even my 6yr old was always acutely aware of where her big brother was, in fear for him. It was the worst of times thus far.

For Arthur no doubt.

Set the seizures aside, the kid couldn't fart without one of us yelling, " Arthur?"

" I'm FINE!!!," he would yell.

To this day.....when we hear a loud bang or it's just too quiet. You can almost see the

hairs on our arms stand up. And as if Arthur can sense it, he will holler out, " I'm ok."

God love him

The start of the " Where is he?"- Grand Mal #3

As many parents of epileptics will tell you, you live in a constant state of fear.

Especially in the beginning.

Maui was the start of , where is he? Whose watching him?

He couldn't be on the beach or at  the pool unless he was within three feet of one of us.

Honestly he  couldn't not be within arms reach.

At the same time we hated to restrict his life too much. He was already our heart kid. We worked so hard to not limit him anymore then we had too.

That was quickly changing

19days after the event on the beach.

About a week after we had gotten home from Maui.

He was riding his bike and had another one. Grand Mal #3

Yes, he fell. His cousin ran to get my husband.

Arthur was unharmed, more embarrassed then anything.
His friends and family members that witnessed it were very shaken up

Thankfully we were seeing the neurologist the next day.

Maui- Grand Mal #2

We had a family trip to Maui planned for July.

Lots of family. We were super excited. Plus Arthur had great checkups right before and

 there was no reason he could not fly or go on the trip.

Yipee!

Off we went. This was when epilepsy was still a little blip in the grand scheme. We still didn't know much about it or understand how strong it could be.
Things like jet lag, getting up early for adventures, diet, sun, heat, etc etc.

We just didn't know.

After a long flight we raced to the beach. Heck it was 5min from the timeshare!
Just love this picture. The pure joy in all of their faces.

The next morning the big kids and the Dads went for a beautiful morning bike ride.

Had we known then what we know now. How important sleep is to an epileptic.
God.
We try not to beat ourselves up about things.
But as most parents know, that's easier said then done. Maybe it had nothing to do with it.
So many woulda, coulda, shoulda's

Once they got home,
I tried to get him to lay down after the bike ride. But he wanted to go to the beach so bad.
Whats an hour at the beach. Right?

Wrong.

We had been there maybe 20minutes, the kids were all playing  in the water. Arthur had met a local boy and was about to go boogie board with him.


I swear I turned my head for a second to check on my daughter and my niece.

 A second.

My daughter says to me, "Mom where's Bub?"

Puzzled. I turn around and he isn't there.

The boy he was standing with is standing there, frozen.

Then I see it, Arthur's boogie board floating.

 Arthur flat on his back in the water. With the waves crashing over him

I screamed, ran as fast as I could through the water.

Talk about a moment that moved in slow motion

I grabbed him. He was stiff as a board.

His face was blue, his eyes were rolled into the back of his head and he wasn't breathing.

At that moment I didn't know whats happening. Is he in cardiac arrest?
He is my heart kid.

Then I go to lift him and he is dead weight.

I grab him, all 100pds of him and drag him as fast as I could to the shore.

 Screaming for  help the whole way.

He's still blue. He's still not breathing.

Lifeguards rush over. Paramedics showed up before I blinked it seemed
My mind is racing. I can't cry. The Mother and nurse in me is trying to figure this out.

Just as they were about to start chest compressions....

I screamed........ NO!!!!!!

Something in me said,  Oh God! It's a seizure.

I yell and say to the paramedics, " He has epilepsy, turn him on his side."
I get down next to him, turn him over to his side with the paramedics.
Suddenly, he coughs and opens his eyes.

Questions are being fired at me from the paramedics. A lovely lady, the one in the striped suit. Stayed by my side the whole time. I don't even remember her name.

She was the angel that got me through that.

Ironically, my husband was back in the room taking a nap.
My Mother in law was nearby but there was 3 other children with us that had to be supervised.
But she did get this picture.

He was in the worst stupor ( ie post-ictal state) after this. You can truly see it, if you zoom in on the picture.
As he was being assessed I sat next to him. He looked me dead in the eyes and said,
" Where's my Mom? Please find my Mom."
To say it rips your heart out is an understatement.
How I kept my composure is still beyond me.

He got some extra oxygen in the back ambulance till his sats came back to normal. The EMTs said his lungs sounded clear, some how he didn't get any water into his lungs.
I agreed with them that a trip to the ER was really a waste of every ones time.

I walked him back to the room. He was still so out of it.
I opened the door to our bedroom and laid him next to my husband.
I told him he had a seizure at the beach and just started crying. I left the room so Arthur could sleep.

I told my husband the story and just sobbed. It changed the tone of that trip a lot and our lives forever.
It took Arthur a couple days to recuperate from that.
We did end up still having a great trip, with lots of good memories.

Trileptal

The seizures seemed to decrease for a little while.

His teacher noticed he stopped "swinging his hair a lot."

( Not Arthur)

That didn't last.

The seizures began to increase in frequency.

He began struggling in school even more.

This neurologist didn't want to restart his Concerta ( for ADD) until his seizures were under control.

All the while my poor child is struggling with seizures and his ability to focus.

The doctor increased the dose a few times.
Never repeated the EEG.

Over the next few months she really didn't seem over concerned.

With that, we were DONE!!!!!

On to Doctor number 3............

Doctor #2

So after the event at school and Doctor #1
 we decided to move back home to

the West Coast.

Of course that meant finding all new doctors.

For quite a while, Arthur seemed ok.

He would occasionally complain of the funny feeling and get a headache and then 

need to sleep.

It happened a couple of times over the summer but seemed to stay at bay for the most part.

Of course I kept getting told it sounded like migraines.

Finally I got the referral to see a neurologist. I wouldn't say I loved her, but finally

someone agreed with me. She said it did sound like seizures.

An EEG was ordered.

We went for his first sleep deprived EEG. Staying up late sounds fun at first.

Really it's not, especially when you have to get up extra early the next day.

Everything went well.

A week later. I had to call the doctor myself for the results.

He for sure had

EPILEPSY

It was quite a blow. I think being a nurse didn't help. I know just enough to freak myself out.

Then, I believe, they labeled it as simple partial seizures.

He would have the "funny feeling," and usually go into a slight stupor. Sometimes wandering off. Then 

complain of a headache and need to sleep.

So he was started on 

Trileptal(oxcarbazepine)

"Oxcarbazepine is used alone or in combination with other medications to control certain types of seizures. Oxcarbazepine is in a class of medications called anticonvulsants. It works by decreasing abnormal electrical activity in the brain."