What if for one day you had to live in your child's shoes?

What if, today, you were diagnosed with epilepsy?

Today, you found out why you no longer have control of your own body
Why you fall or shake out of the blue
Why you become confused and wander off
Why there are parts of your day you can not recall at all

Epilepsy

Today you will begin an array of testing
That many times, produce no answers
You will start taking medication
that may or may not work
Medication that will cause an onslaught of side effects

You are warned against bathing without someone home
Swimming alone, swimming at all
You may never live alone
You may never drive
This could kill you

If that isn't enough?
Some people may be less than accepting
You may be shunned or picked on
People may be afraid of you

You now live
 everyday 
not knowing when
the next seizure will come

Not knowing if
this medication is the one that will work

Praying that every
day, week, month, year
you go seizure free.....
Is a sign that the epilepsy will not return

What if, today, this became your life?

~~~~~~~~~~~~~~~~~~~~~


November is Epilepsy Awareness Month
Join the fight
to end this horrible disease

A little laugh

I was searching for Epilepsy Awareness Stuff the other day

and found this...

Some people may not find it funny. But, you know what?
I do.
As a family we try hard to enjoy life and find humor where we can.
So when I saw this button it gave me a little chuckle.
Epilepsy is part of this family. It does not define this family.


November is Epilepsy Awareness month.

Did I have childhood epilepsy??? Genetics revisited...

It's funny how certain images, sounds, even smells trigger memories.

I was at work the other night.

I am not really sure what triggered this memory.

But it really has me thinking.

When I was in elementary school.

(ha ha)

I was probably 10/11years old and I had these "episodes."

From what I remember I had two.

The first one I wasn't feeling well, so

 I went into the bathroom and I remember starting to black out.

Then sometime later waking up in the bathroom, on the floor.

Of course I got in trouble cause I was in the bathroom too long. Oh teachers :)

The other time, it happened in class at my desk. I just went "out."

 I woke up to the other students giggling cause I had wet my pants.

I remember being so confused as to what happened.

So embarrassed.

At the time I recall being told it was probably just low blood sugar and to make

sure I ate better snacks.

That was it.

I think something similar may have happened in Junior high, but I don't recall the specifics.

What's so crazy is after all the stuff we have gone through with Arthur, these memories had

never come into my head until now.

We have never gotten any explanation as to why Arthur has epilepsy.

They cant even pinpoint the area the seizures come from.

We just hear the left temporal lobe, "mainly."

Might as well just use this.....

A while back we found out a distant relative on my husbands side had epilepsy. But,

of course no one talks to him anymore or even knows where he is. Super.

So any thought of searching our genetics was kinda mute.

Then, out of the blue. These memories of my childhood came into my head.

Have I been the link this whole time???

Is there any way to know if seizures is what those episodes were??

So many questions in my head....

New Neurologist and still seizure FREE!!!!

We finally got to see the new neurologist.

My son didn't need anything, per say...

cause he has been seizure free for over 4 MONTHS!!!

Yes. I said it, FOUR MONTHS!!!!!!!!!!

(knock on wood)

We just recently moved and needed to establish a relationship with a new Doc.

I had researched him. He was nice.

But what was wrong with him you ask?

As I explained how Arthur's Complex-Partial seizures present, he said

"that's not a typical seizure."

Uh what????

He didn't really just say that did he???

As we continued to talk he still seemed somewhat confused. Not exactly

the reassuring appointment I hoped for.

But he did refer Arthur to have Neuro-psychological testing before I even

brought it up. ( Point for new Doc!)

He did a very thorough exam and saw no need to change any

of Arthur's meds since he has been doing so well.

He was patient and answered all my questions.

I am giving him the benefit of the doubt for now. Hopefully his lack

of knowledge on complex partial seizures is just based on the fact

that he is a newer doctor.

He will do for now.

Cause let's be honest, if something changes and I don't trust this Doc.
I'll just find a new one :)

Stats as of today: Arthur 13yrs old

110 pds, 5'4

Keppra 3000mg/day (1500mg 2xday)

Zonegran 100mg 1xday

As a parent that lives with a heavy heart

I think about it a lot.

Being a parent of a child with heart problems and epilepsy.

To all the parents who deal with any problem that children should never know.

Recently, my son has complained of being really tired. With the meds he

takes for epilepsy and the age he is. You could really think its nothing.

My son was born with a major heart problem, 

(see past posts)

They told us that when he hit puberty that we may see problems,

He may need more surgery.

He may grow faster then his heart can keep up with.

We have always known

They, the docs, always said he will be become very tired.
When the day starts becoming reality.

So is it his age? His heart? His epilepsy meds?

I really try to not over think all of it. It can be really hard not to at times.
Thankfully he sees the new Neuro this week and the Cardio in October.
He wasn't due for his yearly cardiac appointment ( just had it in May,) but with us
just moving I wanted to have set up a new one.
So it kind of works out.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Is the funny feeling returning?????

Last week  I was awoken by a phone call from the school.

I work night shift, so I sleep a good majority of my days.

Then being the first week back at school, that

was NOT what I wanted to see on my caller ID.

It's the school nurse.

She says," Arthur thinks he had a little seizure so he came to see me. I will let you talk to him"

I ask my son whats going on.

He tells me that he got the "funny feeling."

-If you have read towards the beginning of this blog, you know that was usually a sign

that a complex partial was coming.

Now we think that even when the feeling didn't amount to much it was still a small seizure.-

Arthur said he was worried so he went to the nurse. Good kid.

He didn't have a headache and it seemed to have passed and not turn into anything more.

THANK GOD!!

I was so proud that he acted  so quickly and calmly.

He was fine and he did have to go back to class.

Part of me thinks.....was he just trying to get out of school?

New school in the 7th grade is no doubt hard.

OR

Is this the slow return of the monster????

So I try not to worry....ha ha ha ha

AND

Since he has been doing SO well for over 3months( knock on wood,)

the new Neuro is in no rush to see him.

UGH

Not till September to be exact

So I keep praying that the one day of  "the funny feeling," was

just mistaken nerves.

But we keep on vigilant watch

Your always on ALERT!

We have been at our new home about a month now. So far, we just love it.

We are all getting settled in and the kids start school

next week!!!

In the state we are now in they start in August.

The kids are not as excited since they just got out of school the

end of June. Such is life!

Why I titled this post " Your always on ALERT," is because

of what I experienced today.

Let me start by saying Arthur is 3 MONTHS seizure free TODAY!!

As wonderful as that is it doesn't remove the fear that I feel always lurks

in my heart.

I was at the gym riding the bike. The bikes at our gym face a window that overlooks

the indoor and outdoor pool.

So I am "riding" along and I notice in the outdoor pool someone is floating face down.

Another minute or two passes and the person is still floating like that.

But I take notice to the fact that this person appears stiff like a board.

Arms straight above the head, legs straight out.

THEN.....

I see the lifeguard running into the water to this person.

My heart sank

What did I immediately think? Yup.

Seizure.

Maybe this person is having a seizure. It sure looked like it. What if

these  pool lifeguards don't recognize that?

So what did I do?

I stopped, gather my things and quickly walked all the way down and out

to the outside pool.

My heart is racing. Maybe I can help.

As I walk up this person is on the ground with several life guards around. They are

about to start CPR. That's when I noticed it. They are counting out loud like they

are doing chest compressions but they are not actually pushing on the chest.

IT WAS A DRILL!!!!

Sheesh.

I'm glad they train their life guards well. But I could have done without the heart attack.

It wasn't even someone I knew. It wasn't even real.

But it effected me for a while after. Kind of  choked me up.

Arthur is doing well right now. Very well. But the memories of the bad times never

go away. The fear, the uncertainty of epilepsy. It never leaves us.

It resurfaces on days like today.

My heart is with each and everyone one of you out there.