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