Not to jinx it....

>> Monday, December 8, 2014

The week before last was ugly. Every night we saw at least 5 seizures. He would fall asleep and within 10 minutes a seizure would awaken him. It would happen every time he fell asleep until about 1:00am when it would slow down.  It was a nightmare that progressed.

I told Glenn his Epidiolex was too high (no pun), and wanted to reduce it. He wasn't so sure and wanted to wait to see if Bug was getting sick.

By Monday, December 1st, I was done waiting.

Here's where my arrogance comes into play: I have NEVER been wrong about Bug and his medications. I know within 30 days if we need to give it more time. EVERY time I have waited longer than that...things got worse. So that week, I was not going to wait any longer.

Monday night he needed Diastat. After the 7th seizure in 4 hours, I didn't hesitate retrieving the valium. I gave it to him and he slept peacefully all night. I know, because he slept between Glenn and I.

By Tuesday we were watching him closely and I backed him down to 3ml 2 times a day.

Wednesday we awaited the seizures at night. They never came.

Thursday, Friday, Saturday and Sunday. Still nothing. Here we are, a full week later and still we have not seen a seizure. By writing this I am almost guaranteeing he will seize. It's just what happens but 10 hours he will have hit a new 6 year record. That's right. 6 years! Since he started seizing every day, only Lamictal introduction 6 years ago reduced his seizures as much.

I'm holding my breath. After 11:00pm tonight, I will breathe because then I can say: He made it a week and everything after that is gravy.

He is following direction and showing preference, now if he can only TELL us he doesn't actually like noodles...that would be something!


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