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."

Doctor #1

Arthur got referred to a neurologist.
 We sat in the little room and I told the story of what has been happening. He examined Arthur and what did he say???

Migraines

Are you freaking kidding me? I may not be a doctor. But I know this is not migraines.

My heart and head said seizures from the day it started.

So needless to say we never went back to that guy

The Funny Feeling

After the soccer incident I spoke to a couple medical friends.

 I am a nurse myself but what was happening with my son was beyond my expertise.

I heard a couple of times, "It sounds like migraines."

I truly felt it was more then that, but who knows?

Since then Arthur had begun to complain of the "funny feeling." It would make him feel unnerved, a little spacey.

If memory serves I think he complained of this way before I took it seriously and it had any other symptoms associated with it.

The IT struck again.

(how I felt not knowing what was happening)

We were at an end of the year carnival at his school. Playing games, having a great time.

Then he comes to me, " Mom I have the funny feeling."

He gets this look of horror.

We walk to a bathroom, no help. So I decide we better leave. Just as we start to walk to the car, it was as if the earth gave out beneath him. He went to his knees and vomited. After that I could barely get him to the car. He slept the whole way home.

After some sleep.....it was like nothing had happened.

That was it. We were going to a specialist.           

The Day Epilepsy entered our life

The day it all began. It was just an ordinary day.

The car was packed and we were off to Arthur's soccer game. My daughter was playing nearby as I sat on the sidelines to watch the game.

Then, I notice my 10yr old son wandering off the field into the distance.
As if he was in a trance.

The coach grabbed him as I ran over to see what was wrong.

Something was not right.

He looked dazed as I asked where he was going.

He stated, " I was going home, where is my home."

My heart dropped.

He then became very sleepy and laid his head down in my lap.

That was enough for me. I packed up our things and we headed home.

He fell asleep on the couch after complaining of a headache.

When he woke up an hour later....

he had NO recollection of what had happened.

Of course, now he seemed like himself.

What the heck just happened?