He did it

Arthur weaned off the Zonegran

without any issues

It was quite scary but worth it.

He  dealt with a little insomnia but nothing else!!!!!!

He will remain on the Keppra and we won't even

discuss weaning that for two more years

It is amazing to see how far he has come. He truly is lucky.

We know epilepsy is still part of our lives and

he is always at risk.

But, finally, this boy........gets a positive nod from life

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

Weaning again......

Arthur remains seizure free since our wean last year!!

(knock on wood)

Before his most recent neurology visit he mentioned he would

like to try weaning his Zonegran again. Gulp!

So we talked to the Doc about it and she said ok.

Decrease by 25mg a week until he is off and if something

happens, go right back to his original dose.

Last time, it was 50mg a month. Besides feeling off, he 

handled that wean ok. It was his choice to not wean anymore.

Arthur felt "off" enough that it scared him. Can't

say I blame him.

So here we go again....... will we wake....

the sleeping dragon??

We already did one decrease and so far so good. Per the info I found

online, Zonegran is completely out of your system in 63hrs.

So if that's true, Arthur's last original dose is out of his system as of yesterday.

Now his dose is lower then it has ever been since he became seizure free.

Can I get a Holy Crap???????

If he continues to have no problems we will decrease again this weekend......

Here's to hoping good things are in store for him

How is it 2016??

I was looking at other families blogs. Blogs of people/families dealing with epilepsy

and I noticed a lot of them had gone silent.

Like mine.

As the waters calm you do "enjoy the silence."

It's not that epilepsy left our lives or that something awful happened.

Cause, like me, I am sure people worry about that when

these blogs go silent.

The truth is,

life has been great. Everyone is healthy and busy.

Arthur has been seizure free for almost 4YEARS!!

(knock on wood)

I was reading over this blog and it's crazy how rough 

things were in the beginning. I can feel my

stress and despair reading my own words.

It did get better. It still is better.

I don't have the heaviness on my heart I did years ago

Do I still worry? Of course, that never stops.

Is Arthur still on meds? Yes, lots.

But he is like any other 16yr old, otherwise.

Busy with school and after school activities.

We have learned what the "new normal" truly means.

 Epilepsy is just a part of our life. We take the precautions.

Even though Arthur is great about taking his meds, we still make sure he does.

There is still a large pill box with everything he takes.

There is still many trips to the pharmacy a month

There are still emergency meds

There are still yearly visits

But life is good, really good