Still weaning.......one more week

We have been weaning Arthur's Zonegran for

about a month. The neurologist said we could wean by 25mg a week.

But that seemed awfully fast. 

He was on 100mg a day. First week we went to 75mg, 
Second week we went to 50mg.


This may not seem fast to some people but it started to feel like.....

So, the Third week we stayed at 50mg
Two weeks at 50mg and there was no issues.....
But we can't forget, Arthur has never been seizure free on less than 100mg of Zonegran on top of his 3000mg/day of Keppra


So we are continuing in true, uncharted epilepsy territory

I feel like the man in the cave. I'm hopeful, yet so terrified
It feels like it could all come crashing down around us, lost in the abyss
OR
We will reach the light......
God, I hope we get there and stay there


The Fourth week we decreased to 25mg

We agreed on an extra week at 25mg like we did at 50mg
Just to play it safe

Only side effect we are noticing is insomnia
From what I read and was told, the side effects that he had with the Keppra before we
added the Zonegran, may re-appear

He did struggle with sleep before adding the Zonegran. But the neurologist feels it will only be temporary while the body adjusts.

We sure hope so. Arthur is a bit.......

Besides the insomnia, Arthur's wean is going well. This Saturday night will
be his last dose of Zonegran.

Please keep him in your thoughts and prayers

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