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

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

When they talk about it...

I was talking to my son the other day....... He is now 14yrs old.

Taller than me and has been seizure free for 19 months!

(knock on wood)

He brought up that he was still having trouble focusing in school.

He currently takes Strattera for ADD

I told him we could speak with his Neurologist but that I doubt

she would change him to a stimulant, like Concerta

That she felt, a stimulant like Concerta could

bring on his seizures again

Then he just started talking about his seizures......

this is not something he does very often

He said, " I don't want to have any seizures, but

I don't worry about it like I used to. I used to

think about it constantly. I was always 

worried when I would have another one. I couldn't

focus at all.......

But now, I don't worry about it at all..."

Now he said, he struggles to focus just cause.

It just about broke my heart to think about how much

anxiety he was living with back then.

He was only 10/11yrs old

To be that scared all the time

I can not imagine living with that

To think how much he has overcome 

What an amazing kid