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.

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."