Monday, October 01, 2007

20 Days

As I noted earlier, after Soren's last round of seizures on September 8th, we increased his evening dose of Zonegran. We then went 20 days without seizures. I commented to Aaron about this. Shoulda known better, hunh?

Saturday morning, when Aaron went to check on Soren, he was really pokey. He was sleeping WAY past his usual breakfast time. And sure enough, when I finally got him up, he had a seizure during breakfast. Thus, we are quite confident that he had a seizure before Aaron went in Soren's room.

So once again, we had to give him Diastat. And then we increased his morning dose of Zonegran the next day. That brings him back up to the original 50 mgs twice a day that he was on when we first started the Lamictal. Let's see if that does the trick.

If not, we may check out a drug called Clobazam. It's not approved here in the US (it is in other countries), but LA Children's Hospital is doing a study on it. Soren may be a candidate, so we're going to give a call.

Clobazam is a derivative of Diazapam, which is the drug in Diastat. Diazapam is commonly known as Valium. The problem with Diazapam and thus Diastat is that a tolerance can be built to the drug. Thus, it can't be used every day because it loses its efficasy.

However, in Clobazam, part of its "derivative" nature is that they have removed this tolerance-building element. That's good! The other good thing is that kids who respond well to Diazapam tend to respond well to Clobazam. Soren responds great to Diazapam, so if he's a candidate, this may be a new option for him.

On another note, I want to thank everyone who has been donating money to Soren's Fund. I don't know if it's because it was his birthday or just because everyone is wonderfully generous. Either way, the money is coming in VERY handy for this next trip to the DR. Our funds are running low and every little bit (or big bit!) helps!



No comments: