It happened.....at school

Arthur had been fortunate enough that he had yet to have a seizure at school. 

Until this day

Despite the IEP, HAP, ABCDEFG.....

( School is a whole other monster I will post about later)
it was not handled well

We have yet to pinpoint one thing that triggers Arthur's seizures. One of the many

things seems to be over exertion.

That day, he was at PE.

Arthur's version of the story:

"I was at PE and I got the funny feeling. Then I woke up in the locker room, alone, spitting in the toilet. Then the teacher told me to walk to the nurses office"

Which he did, ALONE!

The secondhand story we got:

"He stated he did not feel well and seemed a little out of it. The teacher walked him to the locker room but let him go inside alone, since it was a boys locker room and she couldn't leave the other students alone. Then he came out and I told him to see the nurse."

So all the meetings we did. All the action plans we typed out. My child who becomes disoriented and wanders during seizures. Was, ALONE. He was in the locker room, ALONE. What if it had turned into a Grand Mal and he hit his head on the toilet he was spitting in?
What if he had walked off campus??

The school called and his Father picked him. Arthur took a long nap that day.

I get teachers have other students and most people are not familiar with epilepsy.

But ARE YOU KIDDING ME?

I didn't even mention how many other problems we had already had with the P.E. "teacher."

We went straight to the principal. 

We were promised it would never happen again. The teachers would be sent emails and be re-educated on what to watch for. 

Super.

More action plans, health plans. Blah Blah Blah.

All we ask is this......

You have been overly informed my child is an epileptic, so if there is even a question in your mind

that he may be having a seizure. 

DON'T LEAVE HIM ALONE!

PLEASE

Doctor #4

I wont lie and say I was thrilled with Doc #3.

So when we had to change

doctors cause of insurance, I wasn't heart broken.

Doc#4 was a lovely gal.

She was truly on top of things and worked closely with all specialties.

Her and Arthur's cardiologist worked on the same floor.

I could even email them my concerns! That was beyond wonderful

I told her he still had 2-3seizures a month. She said that was too much.

Agreed!

His Keppra was increased and he also had to wear an cardiac

event monitor to make sure there was not a link between his heart and the seizures.

With the type of surgery he had, there is that possibility.

It took FOUR doctors to think of that???

We were able to record his cardiac rhythm during a seizure and luckily it showed there was no link.

I guess that's good.

On New Years, Arthur's wandering took on a whole new meaning.

Out of the blue we found the front door open, and Arthur
  half way down the street, totally confused.

Muted and unable to speak

What kind of messed up medical condition causes crap like that?

Oh yeah, epilepsy.
GRRRRRRR

Mr. Complex partial is back

The next couple of months was a constant battle of when the next one would hit and how much his Keppra would be increased.

It seemed to level out in his body every two weeks and like clockwork he would have another seizure.

Each time the seizure got more muted.

The Grand Mals had ceased

Thank God!

Now began the "Complex Partial" seizures.

Wandering....usually he would say he needed to go home.
 If he could talk at all.

Usually he was muted, as if his teeth were clenched.

Each seizure was a little different.

We kept increasing and increasing the Keppra.

Finally he made it 30days!!!!!

My husband and I even went away for the weekend.

We SO needed that.

As many know, epilepsy is sneaky. His break was short lived.

Enough is Enough!!! Bring on the Keppra

Arthur had one more Grand Mal Seizure at home after that wild week.

 I called and called until his neurologist called me from his vacation.

If you don't have a back up, then it's your own fault

if your vacations get interrupted.

I told him I wanted Arthur admitted to the hospital. Enough is enough.
The nurse in me was in high gear

No more medication dance with  Mrs.Trileptal and  Mr.Lamictal.

What I had really wanted was Isaak to be put in the hospital for a 24hr EEG. So we could hopefully catch this beast and see how best we could control him.

 I thought that was what we were doing, as well as loading Isaak with Keppra.
The heavy hitter.

Arthur was admitted. Hooked up to the video EEG and whamo! Loaded with Keppra.

Well wouldn't you know....his EEG showed no activity.

Well I would sure as heck hope not!! Ya just loaded him with a HUGE dose of Keppra.

I swear....sometimes I wanna knock these doctors out.

He was sent home on too much and we had an drunken sailor who couldn't sleep.

Sheesh!

We quickly got his dose lowered and all seemed ok.
 He even got to start taking his Concerta ( for ADD) again before school started.

Maybe it would get better?

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

Lamictal comes to play

We explained to the neurologist what had happened in Maui. He said obviously Arthur wasn't on the right medication. The seizures seem to be changing.

Ya think?

So he added Lamictal and we were to start weaning Arthur off Trileptal slowly.

It was quite the regimen.

He had another EEG shortly after this. That confirmed the seizures were in more parts of his brain then previously thought.
Just when you think it can't get any worse, it does

I remember Arthur telling the neurologist, " I just don't want to have a seizure on my birthday."

That's not too much to ask is it?

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.