Thursday a week ago I got the phone call, "Trish, he's been out for 15 minutes...what do you want us to do?".
I was heading to his school at the time and when I got there he was still "asleep". One type of his episodes were back, but this kind is different from the usual pass in/out with a cluster effect.
Let me review since last fall:
1. He was having this type of episode more often.
2. He passes out and doesn't come to for quite a while. The usual amount of time being from 20 minutes to an hour. The longest being 4 hours.
3. The 4 hour episode was a year ago to date (weird)! Yes, we were at the ER by then and had been transported from Cone to Brenner's. And no they couldn't determine ANYTHING!!!
4. We were put in the EMU to determine if he was having seizures. They said yes and put him on a medication which didn't work.
5. Then tried another that made him very sick.
6. After several months of trying to get the doctor to communicate we switched doctors.
7. The 2nd opinion doc was not convinced he was having seizures.
8. We decided to take him off that particular medication.
9. Drake's been only having "cluster" episodes since he was on that particular med, even if it did make him sick.
10. I don't have a #10, just seemed I needed to add it. Maybe I should have called it Drake's Top 10 Reason's to keep Mommy on here toes for the past 6 months!!!
Back to now:
He's been off the Kepra for 10 weeks now.... and what do you know? He's had two with-in one week. Last Thursday lasted an 1 1/2 hours, this Monday lasted 25 minutes. He seems asleep, but jerks periodically during these episodes. Monday was the first time I looked at his eyes during this type episode and they looked like little pin points. What does that mean? (Note to self: research that later.)
Both times this week I called Drake's pediatrician and he had me come right away. Wouldn't you know...he woke up just before the doctor had a chance to see him. UGH!!! It's a good thing I had witnesses to see Drake pass out or I would begin to think I'm a little crazy!
The current Neurologist (2nd opinion) has advised me to give Drake a dose of Diastat if it goes for longer than 5 minutes. I still have not heard from the Chapel Hill Neurologist (3rd opinion) as to what he thinks.
Once again...we wait!
