We started the wean and my memory isn't as good as I thought it was

 Just about 2 weeks ago we started

THE WEAN

Arthur has been seizure free for almost 3yrs

so to play with fire

is SCARY!

But is neurologist is right.....

We will never know if he has outgrown it unless we try

So we cut his Zonegran by 50mg

This wean I wasn't overly worried about, honestly, because

Arthur became seizure free being on

3000mg/day of Keppra and 100mg/day of Zonegran

We increased to the the Zonegran by 50mg over year and half
ago because he was complaining of auras.
But he still had not had an actual seizure.


The memory is a funny thing...... and well, as I get
older I tend to think I have the timeline right 
and then I actually check the records
I keep on Arthur.

I forgot some key things

Looking back, he complained of headaches A LOT before we increased his
Zonegran to 150mg.
Once, in 2012 I noted an episode where he had a terrible headache
and then seemed a tad incoherent. Slept for a couple hours after that.
In my notes there is.....seizure?

CRAP

So guess what I got a phone call about today?
"Mom, I have a really bad headache. It feels like the ones I get after seizures. But, I don't think I had one. But, it really hurts!"

Epileptics are prone to headaches. Just another perk....grrr.
But, as I looked back on his medical notes, I worry.
Maybe we shouldn't keep weaning

Maybe, this is enough to tell us he hasn't outgrown it

The fear that we have been able to keep at bay for years now is creeping back in
and
I am really scared

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