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.