SUDEP

I wanted to post all the research I could find about SUDEP.  

Sudden Unexplained Death in Epilepsy

 But, honestly, this is a hard thing to write about and I just can not

let it consume my thoughts too much. So here's a bit of info and a

website to check out.--------------------->

People, not just parents need to be aware of this. We have

seen FOUR neurologists and not one has mentioned it.

Why? My guess? 

It's scary. Really scary.

 As if I don't worry enough, right? 

The cause of SUDEP is unknown.

 It usually happens during sleep. 

 The biggest known risk factor is having frequent 

Grand Mal seizures.  

 Many people die every year  

 The estimates

say 1,000 people with epilepsy die from SUDEP every year. In 

people with uncontrolled, difficult to treat  seizures the rates

have been reported as high as 1 in 100  per year.

I read a statistic somewhere in my research, a statistic
that makes me even more sick

to my stomach.

SUDEP rates seem to be the highest in males 12-15yrs old

( #$%&*@^%!!!!!!!)

If you or someone you love has epilepsy, be aware.
SUDEP can strike without warning. It does not

discriminate.

www.sudepaware.org

The Day to Day

Arthur's stats as of today?

Almost made it 4wks seizure free.....had a mild one last week.

Meds he takes every day: 3000mg Keppra, Concerta, and vitamins.

It's a lot of pills. I give him so much credit for handling it so well.

Once upon a time I spent 45min trying to just get him to swallow one pill!

Now he downs a handful likes it's no big deal

(not his hand or pills)

We were due to see the Neurologist in May. So I called to schedule the appointment.

The Doc is suddenly on maternity leave and wont be back till Sept. Huh? What?

The office is trying to figure out where to place all her patients.

Awesome.