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.

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.

The Mystery Box. Grand Mal #1

Up till now the seizure's were strange but not grandiose if that makes sense.

Little did we know how life was about to change.

My husband and kids were packing up to go on a family camping trip for the next day. 

It was around 9pm, my little girl was already asleep.

Arthur was sitting on the floor in the living, leaning against the couch, playing video games.

Out of no where, I hear my husband scream for me.

I run to the living room to find Arthur, barely responsive with his flopped back on the couch.

He was stiff but not convulsing. It took both of us to get him up on the couch.

We kept screaming his name.

 I noticed his teeth were clenched and his eyes and lips were twitching.

I thought " Oh God I bet it's a seizure."

I slapped him a couple times to come too and he barely flinched.

This was so new... I screamed " Call 911!"

Lucky for us the Fire Dept was literally down the street from us. So they were there in less then 5min.

We use humor with a lot of things and why should this time be any different?

Around this time Arthur was very into a video game, I believe it was Call of Duty.

There is a box you look for apparently. To help you in the game.

It's called " the mystery box."

Well the paramedics/FD show up and come through the door with all their gear.

Arthur is still in and out of it.

What do paramedics bring with them? A medical supply box.

Arthur looks over and notices the paramedics box( still in a post-ictal trance)

and asks, "Is that a mystery box?"

Of course his Father, the paramedics, and I start cracking up.

You have to be able to laugh sometimes, even during the worst of times.

The paramedics agreed it was a seizure and since it was presenting in a new way, off to the ER

we went.

Part of me knew there was nothing the ER could do. But it's better to be safe than sorry. He slept it off in the ER, after a MRI and blood tests.

That was his first Grand mal seizure.

The world of epilepsy is an unforgiving place,

a place where the "beast" takes control

and

his merciless nature reeks havoc.

That night, the "beast," took control.

Doctor # 3

Excuse the timeline a bit. I'm doing my best to type this by memory.

I believe it was right before school ended we started with Doc#3.

He increased the Trileptal a bit and said towards the end of the summer we could restart

the Concerta.

Hooray!!!!

Arthur has been asking if he could get that "focusing medicine back."

He was thrilled to know he could before starting middle school.

Doctor #3 was through, kind and always on top of it.

We did more EEGs.

I loved that I could call him anytime of the day or night.

Let me tell you....over that summer. I did, a lot!

I still had my reservations about him.
Still.....not one person could say if this was gona be a lifetime battle.
Or would he grow out of it?
There are many types that can be linked to puberty and go away with age

On a happy note. Arthur's cardiologist visit that June was excellent.

No changes. No needs for concern at this time.