Johns Hopkins Canceled

After all my ramblings on the statistical information surrounding Evan's seizures, the only conclusion we could come up with is that we need more data. We are seeing a couple days a week with no seizure activity and this is really reassuring! So, we canceled the appointment with Johns Hopkins (to start the Ketogenic Diet) and are going to give Vigabatrin a little more time to see if it works for Evan.

We increase Evan's Vigabatrin every Tuesday and we'll be interested to see what the next couple days bring, but Evan has had 3 seizure-free days since Tuesday. We flip-flop between feeling hopeful and helpless and it's nice to be on the hopeful side for a change!

Mathematical Ponderings

Ok, so now we have a couple decisions to make about going to Johns Hopkins. We are scheduled to have Evan checked into Johns Hopkins to have the Ketogenic Diet administered, but the Vigabatrin seems to be working a little better than past drugs. So the question is, should we postpone the diet to see if the Vigabatrin works or try both treatments at once.

Everyone keeps asking how the Vigabatrin is working, so tonight, believe it or not, Rob and I did some math. Evan has been on Vigabatrin for 23 days and we compared the seizures he's had while on Vigabatrin to a 23-day period before he went on Dilantin, which increased his seizures. We came up with a 27% reduction in seizures while on Vigabatrin which seems pretty significant. However, there was a spike in the October numbers when Evan had 10 seizures in one day and if that day is removed for both months, the decrease in seizure activity is only roughly a 10% decrease in seizure activity. But then if you look at the 23 days immediately before going on Dilantin and the 23 days while on Vigabatrin, and remove the 10 seizure spike, the difference is one seizure for the whole time period and basically no change with the Vigabatrin. Have I ever mentioned that I hate math?

Vigabatrin *MIGHT* be Working

Every time we start a new drug, I put in an entry into this blog saying that it might be working, and Vigabatrin is no different. We've seen a definite decrease in seizures and now we are waiting to see if they continue to decrease or not. If the seizures don't stop completely the question becomes, how many seizures are we willing to accept to keep Evan on a drug that has the potential side effect of permanent peripheral vision loss. That sounds so dramatic! We're hoping they stop completely, but we'll see. Evan actually had three days without seizures this month so far and that hasn't happened since October, so we do have reason to be hopeful. He has gone from 1-4 seizures a day to 0-2 seizures a day which gives us some hope.

Ketogenic Diet

We are giving Vigabatrin a good try but haven't seen dramatic results yet and Evan is on John's Hopkins' schedule for the Ketogenic Diet for Feb. 5-8. If the Vigabatrin starts working, we'll cancel this, but as it looks right now, we'll be at John's Hopkins next month.

Basically, they'll admit Evan so they can get him into Ketosis and start the diet. They'll also do some testing and monitoring and he'll spend a total of four days in the hospital. They administer the diet in groups so they can teach several parents how to keep up with the diet in one session. It'll be interesting to meet other families that are going through similar issues, but I don't expect it to be an easy week.

"My Seizure Made Me Lay Down"

This is what Evan told me when I found him on the bathroom floor in mid-seizure. A seizure in the bathroom is a scary thought: lots to hit your head on, nothing to cushion a fall before landing on ceramic tile, and then there's the stool which adds height to any fall. The bathroom, any bathroom, is pretty much a death trap.

Luckily he didn't fall. He was on the stool washing his hands after dinner and had an aura (a sensation indicating a seizure is coming) and he got off the stool and laid down. It was one of the more intense seizures he gets, which pretty much sucks. But we were happy he knew it was coming and knew what to do.