I have not posted on this blog for quite sometime.
Arthur has been seizure free for...(knock on wood)
almost 3yrs
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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
