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."

The in between years

After the day at Disneyland 

and a much needed second set of ears tubes, life calmed down.

Fever management was still serious business in our house.

But, the seizures seemed to have "gone away."

Arthur remained  very healthy for the most part. 

We moved back East and my beautiful daughter Ann was born in 2005.

Life was good

Disneyland.... Febrile seizures, a glimpse into the future?

After the term "febrile seizure" came into our vocabulary, fever management became serious business in our house. A temp of 100 earned Motrin ASAP. We found that worked best for Arthur. 

We had one more trip to the ER for a less dramatic seizure. But for the most part our crazy temperature control seemed to be working plus those ear tubes sure helped :).

As many parents know, ear tubes fall out. He had lost one but had been healthy so it wasn't a huge worry.

So with family in town off to Disneyland we went. Of course that morning he seemed like a cold may be coming but was so excited for his big day.

For the most part, it was a great day. He got to meet his all time favorite Woody!

Life is ever changing and flips on a dime. As we found out waiting in line for the submarine.

I was holding him and he rested his head on my shoulder. He was only 3yrs old at the time. All that walking would tire any of us out.
But as we were in a line a lady behind me said, " Is he OK?"

Here I think he's asleep.

So I pull him away from my chest as to lean him back and he's a rag doll. Face blue, eyes rolled in the back of his head.

Back then I didn't think seizure. I think my heart child is in cardiac arrest. So as if in a Lifetime Movie
 ( always have to find the humor) I ran with my limp, little boy in my arms, screaming
 " Some body help me!!!"
You know what played in my head? Clocks by Cold Play
Probably too much Third Watch at the time
My whole life could have a soundtrack, my children are no exception

I make it to one of the walkways and just like in a movie this guy appears.

I still think it's one of Arthur's many guardian angles.

He stops me and says he is there to help. To just lay Arthur down on the walkway so he can look at him. I explain about the ear infections and febrile seizures, etc. He points out that Arthur is breathing, he feels warm. He bets it was just a febrile seizure.

Then the Disneyland nurses appear and that guy is gone.
 Just like that.

Arthur is taken away from Disneyland in an ambulance. Not exactly how you want to exit the park.

The story I hear from family is Disney wasted no time swooping in to calm my 3yr old niece who was with us when this happened. Who's her favorite character? Food? And like ninja magic, toys and balloons appeared for her.

Disneyland handled this whole incident amazingly well.
 I'm forever grateful.

We went to the ER and he got some whopping doses of Tylenol. He did indeed have a  fever and another ear infection. Sheesh! He got his second set of ear tubes after that.

There was one thing they did mention in the ER that day....

That children who have febrile seizures have a higher risk of developing epilepsy later on.

It wasn't until a day at the soccer field, some 7yrs later, did those words come back into my mind.

(Arthur that day at Disneyland before "it" happened)

Arthur

Arthur was born a month early on a beautiful August day in 1999.

After his Mother, me, spent 12 weeks in bed. 

Arthur had been diagnosed in utero with a heart condition called

Transposition of the Great Vessels

( The Amazing Heart surgeon doing what he does best)

His start in the world was a rough one. He had open heart surgery at 5days old to repair his defect. Subsequently spending the next 5weeks in the ICU recovering.

( Not Arthur, but exactly what it looked like when he was in ICU)

The year that followed was full of doctors appointments, hospitals stays, ear infections. You name it, he probably dealt  with.

But despite the cards he had been dealt he was the happiest, go with the flow baby. I would have had a hundred more if they could all have his sweet disposition.

Once he hit his 1yr birthday his health seemed to drastically improve besides constant ear infections. He was finally off his daily heart medicines. We thought he was in the clear. But those evil little ear infections could make my poor little guy oh so sick.

At 15months he spiked a fever over 104. We tried Tylenol, we tried Motrin. Tepid Baths, etc.
nothing brought it down. Through it all he was such a trooper. He sat on the floor, looking oh so pitiful. Playing with his cars, as if saying " I'm just fine Mommy."

We placed a call into the pediatrician and were told to go to the ER. As soon as we got to our curtained off room it started.

A full blown Grand Mal seizure......while in his Daddy's arms.

I can't even explain how awful it is to watch your child's whole body convulse and see the shear terror in his eyes.

After several doses of Ativan it stopped. He was transported to the local children's hospital for 5days of testing. Testing the showed nothing more then that he merely had a common childhood virus. 

The seizure?

His first FEBRILE seizure.

A febrile seizure is defines as "  a convulsion associated with a significant rise in body temperature. They most commonly occur in children between the ages of 6 months to 6 years and are twice as common in boys as in girls."