No News is Good News until.............There is NEWS

I have not posted on this blog for quite sometime.

Arthur has been seizure free for...(knock on wood)

almost 3yrs

As we got comfortable in our "new norm,"

I just didn't feel like posting

Plus.....what was there to post?

Arthur has been healthy in every respect!

No seizures and his cardiac function is SO good, he got moved to

having cardiologist apppointments every two years!

Can I get Woo Hoo?!!!

So what's the news you ask.......?

What happens when you have been seizure free

for over two years and you're a teenager?

The neurologist brings up weaning

She says there is a chance he could have outgrown the epilepsy and we 

won't know that unless we try to wean his meds

If you read this blog from the beginning, you will see how

hard it was to get his seizures under control

I honestly never thought they would try to wean him

But the neurologist made a good point......

His last couple EEG's were normal. All his MRI's, CT scans, PET scan, etc

have showed nothing abnormal

Which leads her to think that his epilepsy is something he could outgrow

But the thought of weaning is really scary

There is always that chance that when we open the door to the dragon that is epilepsy, 

we may never gain control again

But Arthur is not a baby anymore,

Arthur is 15yrs old and this is something he wants to do. 

So tonight we cut out 50mg of his Zonegran.

Then we watch for four weeks.

If no seizures, then we wean another 50mg and so on until

he is off the Zonegran

For Arthur, a total wean from Zonegran would take

3 months

From that point he must stay seizure free for a year. Then we tackle

KEPPRA

Please keep Arthur and our family in your thoughts and prayers

1 in 26



Approximately 1 in 26 People in the United States Will Develop Epilepsy at Some Point in their Lifetime

      Epilepsy is a chronic condition of the brain that affects people all over the world. It is characterized by recurring seizures-- which are physical reactions to sudden, brief, excessive electrical discharges in brain cells. Anyone, anywhere, at any time can have a seizure.

     The physical reactions of a seizure depend on which part and how much of the brain is impacted by the excessive electrical discharges. Although most people think of a seizure as a full-body convulsion, seizures can also be brief muscle jerks or unconscious behaviors like picking at clothing or what appears to be a lapse of attention, like daydreaming.

    The frequency of seizures varies greatly, from once in a while to several per day.

    More people live with epilepsy than with autism spectrum disorders, Parkinson's disease, multiple sclerosis and cerebral palsy – combined.

     Epilepsy is one of the world's oldest known medical conditions, and yet too many people do not understand it. In too many cases, this misunderstanding has led to fear, discrimination and social isolation.
    Together, we can reduce the fear and misunderstanding, so the lives of millions of people around the world -- people living with the condition and their loved ones -- will be forever changed for the better.

Epilepsy Stats

65 MILLION: Number of people around the world who have epilepsy.

OVER 2 MILLION: Number of people in the United States who have epilepsy.

1 IN 26 people in the United States will develop epilepsy at some point in their lifetime.

BETWEEN 4 AND 10 OUT OF 1,000: Number of people on earth who live with active seizures at any one time. 

150,000: Number of new cases of epilepsy in the United States each year

ONE-THIRD: Number of people with epilepsy who live with uncontrollable seizures because no available treatment works for them.

6 OUT OF 10: Number of people with epilepsy where the cause is unknown

Did you know that more people die every year from epilepsy and related causes than from Breast Cancer???

Yet, epilepsy doesn't get even half the amount of funding and awareness.

Breast Cancer is a very important cause, no doubt.

But how much Pink do you see vs. Purple????

We need to find a way to change that

Epilepsy Anthem

My son posted this song on his Facebook page

He is a HUGE Linkin Park fan

The reason I post this is because of the lyrics......

When I think of epilepsy 

and 

listen to this song

It's almost like an anthem

an

Epilepsy Anthem

Arizona Epilepsy Walk

Today was the Epilepsy Walk in Phoenix.

We walked for our son.